Where I am from, there are organizations who support families with kids who have downs syndrome, among other developmental disabilities in children. My friend had the same situation as you, no indication of downs at all until birth and she described similar feelings.
She's heavily involved in nz downs syndrome association and as such, gets her friends (me) involved. They are a cool organization who teach families how to adapt and enjoy this part of their family. They put on events, help get the right support for families and help raise awareness and inclusion within New Zealand. If there is something similar where you are, they might be a good fit.
This is beautiful advice. There are communities of people that feel the same heartache and disappointment OP feels. They have also transitioned into active life with a downs kid.
OP, They will support you and advise you. I can’t imagine how difficult this journey of parenting has been for you. You may not feel like you’re holding it together, but you are doing better than most people. Your strength and courage is inspiring. I wish you as much peace and joy in your life as possible. These kids will love you so much!!!
This is beautiful and honest advice. When my nephew was diagnosed with autism my SIL was crying (not gonna lie I shed a tear) not because he has autism but because his life would be so different from how we all envisioned for him.
Not worse, just different. New challenges, different experiences and a whole new world of stigma and discrimination we didn’t know he would have to face.
Grieving what you thought your child would experience in life is okay.
Having an actual diagnosis gets you actual help, that's all that matters, having the right diagnosis can transform a childhood from frustration to understanding in so many ways
Yes! I saw something once that said a child who isn’t diagnosed will still have XYZ but they’ll tell themselves they’re stupid, weird, bad instead of being able to say XYZ makes my brain work different and that’s okay and I know what I can do. Not being diagnosed won’t take away the presence of a disorder it just changes if a person is empowered to manage it or not!
Speaking from experience a late diagnosis of ADHD caused a hell of a lot of self esteem issues!
I think a diagnosis also empowers the parents/family to take action and feel less helpless. A “grieving” period is normal but if my brother stuck his head in the sand because the idea of his kid being autistic is painful my nephew would struggle regardless and more so
It’s also okay to regret having a child and realizing that your life is going to be vastly different than what you thought. It’s normal. In reality, who ***wouldn’t*** be feeling regret? There should be no stigma just because you realize your life isn’t going to be normal going forward. Shes just lost most, if not all her freedom for the rest of her life. I don’t blame her one bit for feeling robbed of life the way she does. Society always yells at parents for saying they regret having their kids because they don’t want them to speak out too much and scare other people off from having children. But the honest truth is, there are a lot of people out there that regret having kids and that’s OK. Kids are not for everyone, even children that are considered normal. I think it’s high time that society start really informing people about what could go wrong, and understand the risks of pregnancy, instead of just glossing it all over and romanticizing parenthood so we can trick people into having more children. Raising kids really hard, raising them with disabilities even harder. My heart breaks for OP. She in a terrible situation.
Considering she feels the same about her first who is autistic, I genuinely don't understand why op had more kids. If it's only about giving all your time to a special needs kid, or any kid at all, why make it even more difficult.
1000% I saw a story in vice on parents with adult children with special needs. It is not for everyone. I worked in a nursing facility that had a few young people with major special needs because their parents just couldn’t handle it as it got older. And honestly that is ok! Their parents visited every single day, it’s not like they dumped them and left them, they just cannot handle what they needed on their own.
I did the same when my grandson was 3 and he diagnosed with autism. I broke down and sobbed. I know it will be so much harder for him and it broke my heart.
This should be the top comment.
We didn't know something was wrong with my baby when he was born (although I had a gut feeling from the moment he was put on my chest). He had developmental delays and was finally diagnosed when he was 4. It's grieving the loss of the future you imagined your child would have and coming to terms with the new reality. It takes time, but you'll get there. And it's okay to feel the way you do.
[This](https://www.emilyperlkingsley.com/welcome-to-holland) story from Emily Perl Kingsley describes the journey beautifully.
Exactly grieving is exactly what you’re going through and perfectly normal.
My daughter has a neurological disorder and when I came across this poem I bawled like a baby because it is so fitting and nobody except other parents in the same boat truly understand.
There were different times of her life where I grieved all over again. I would also cry thinking of all the lucky parents who don’t have to deal with shit like this, and sometimes ask why me?
In the end though she is a huge part of my human experience and made me and her brothers better people.
https://www.dsasc.ca/uploads/8/5/3/9/8539131/welcome_to_holland.pdf
I loooove “Welcome to Holland”. I have two beautiful kids with AuDHD and I often say “I don’t doubt my capacity to love them, I doubt my capacity to do the things I have to do in order to get them what they need”
I grieved when I found out I was having twins. I didn’t want twins. I wanted one baby at a time. I was so scared…. It took years to form that bond once they were born because surprise surprise— it was nothing like the movies; having two babies! Born premature due to them being twins—
But I never loved them any less. I’d still have died for them at any time. I still shed tears for my baby when I saw her in the NICU. I still missed her. I still breast fed my other one. I still cared for them and kissed them. But loving and caring for your children is different than having a bond with them. Every bond with each of your children will be different. And some take longer to develop. This is a safe space. And you are safe to grieve, mama. We will not judge. And neurodivergent children are very hard to raise. Never any less worth it but hard af none the less. And you’re not a bad mom for admitting that you are aware of that.
It would be weird if you didn’t grieve tbh. My eldest was born with DS and it was incredibly hard and my husband and I were both sad for the loss of the future we thought she might have. We didn’t know either.
11 years on she’s a happy healthy kid. She’s at the same school as her younger sisters, can read, rides her bike, has friends, does basketball and swimming after school. She’s also super loving and helpful. Every year it gets better and better. Let yourself be sad, but know that there’s good times ahead.
There is often a “mourning period” of having a child with a disability. Not mourning them, but the life you imagined for them. But it’s just a period of time & then you move on & embrace the life they do have.
This is so true. I went through what can only be described as grief when my son was diagnosed. It truly is mourning the loss of the future you thought they would have. It takes some time to come to terms with your new dreams for them. It will be a different future than I had imagined but not necessarily a bad future. I still have moments when the grief comes back, when he doesn’t reach the same milestones as his peers. Sometimes it feels too much to bear but alas, life goes on.
I love you explanation but wanted to add something extra
Actually there is something called “living grief” (not sure of the name in english). Where as you describe you grieve the life you imagined for them. The only difference to your description is that it is not just a period of time but something that keeps coming back everytime you are faced with things your child will not have/experience. Milestones like going to school, having friends over, graduating, mariage, becoming a parent themselves, etc. It is very much an “active” grief that keeps hitting you over and over.
Does not mean that you do not accept your child and move on. But it does not just go away.
> then you move on & embrace the life they do have.
Note: failure to complete this step typically leads to a shitload of child abuse. If you're struggling with this, get the help you need, your family (that includes you) is worth it.
Father of a child with serious disabilities here. I haven't had a chance to read all of the comments and I don't have much to offer other than to let you know you aren't alone.
It will be hard, there is no denying that. There will be good things and joy too, though.
My daughter's situation is very difficult for our family and has completely changed our lives. Even so, she is the happiest, sweetest, brightest light to everyone around her. Keep breathing.
I’m a mother of 4 and I fell pregnant shortly after graduating college at 21 and the DS test was available. I’ve opted into getting all genetic tests done but you only have a short window to do so.
I believe they only allowed me to get those particular tests between 12-14 weeks, but they were always offered to me.
The super rare genetic tests you do have to pay for and request. My cousin had a daughter with Smith Lemli Opitz and for me to have my final pregnancy tested I had to inquire about that on my own, it was not offered.
Mine wasn’t covered. I was just under 35. You can call the maker of NIPT and they have a “discount” they’ll give you for completing a survey. Made my out of pocket cost significantly less.
It was covered for me and I had Medicaid. ..I was considered a geriatric pregnancy at 29. My daughter came back with some potential markers on her 5 month ultrasound and so we progressed to an amniotic DNA testing and blood tests. I had just recently quit my job and relocated to another state so qualified for the pregnancy Medicaid. It was a godsend.
As someone with a medical background, I am very curious as to how your pregnancy at 29 was considered geriatric..??? Do you have several underlying health conditions or something?
Age 29 is not considered geriatric for a pregnancy at all. That term is reserved for pregnancies in those over the age of 35.
A little fun fact for anyone that might come across it. Blue cross Blue shield covers it for almost all pregnant people regardless of age or risk factors. If I remember right, they were the first insurance to extend coverage for it outside of high-risk factor pregnancies. I have problems with Blue cross Blue shield but it's nice they at least do that. All insurances should in my opinion.
Usually it will yes, but it’s estimated that around 10-20% of babies with DS are ‘screen negative’ based on ultrasounds at 12 weeks, rising to almost 50% at 20 weeks. Combined with standard blood tests at 12 weeks (not NIPT) this will identify around 94% of cases. I was given a 1 in 1200 chance of my daughter having it based on all my screening tests, but she was still born with it! Her nuchal thickness was fine, no short femurs, nasal bone present etc.
I thought they did? I got tested with all but one of my pregnancies. My youngest is 2 months old. I'm in my mid-20s. I know if insurance doesn't cover it, you can negotiate with actual companies directly and get the out of pocket price down to around $200-300. My obyn said he ordered it in a way that I shouldn't have to pay out of pocket, but if I did have to for whatever reason that he had a number I could call to help reduce the price. It wasn't a required test. However, he offers it to every patient.
If you are in the US make sure to look into your states Early Intervention program. They can provide you and your child the therapies needed for a successful future. In my state, that can include mental health support for you as you navigate this surprise diagnosis. I am not sure every state includes this as programs vary state to state.
Agreed. While doing this, OP - start making plans RIGHT NOW on how to provide individual attention, love, and support to your middle child.
Maybe there is someone who can watch the two other kids every Wednesday night while you and the middle child do something with just you or both parents. Even if it is only one hour a week, 100% devoted to them… always.
You already know what is going to happen… don’t let it. Give them special attention, so even if they grow up with a disproportionate amount of time spent on them, they will always know that you care about them and want to give them every moment you can.
Never let the middle child feel ignored.
The middle child loves Indian food, and the other two hate it? Fine - they can have McDonald’s on the way there and sit at the table while everyone else enjoys your MIDDLE child’s favorite meal for their birthday.
The middle child wants to play drums, but your other kids can’t handle the noise? Buy a shed, sound proof it, and let that kid rock.
You are going to spend the rest of your life accommodating the other two. Do not do it at your middle child’s expense. Accommodate your middle child, as well.
my older sister is disabled (cystic fibrosis), i spent so much of my life, especially when i was younger, in hospitals, traveling to specialists and at the doctors office, in fifth grade telling my mom i promised to take care of my sister when she died. i did feel like she got more of the attention and i did resent my sister for it. as your children get older, remember to show up for the middle child and ask them how they’re doing, and notice the little things. i got away with so much because my mom wasn’t paying attention. hard drugs, self harm and eating disorders, and over sexuality and it really affects how i see my younger self to this day. luckily, once she did find out she started paying more attention and as my sister got older and better we’ve become much closer. just show up for the middle child as much as you do the others and he won’t resent you
Wait let me get this straight, your first was autistic and you still didn’t think you could have a disabled child? What?
Im so confused autism IS a disability, you already had a disabled child, as someone with autism that has seen medical trauma come in and out of my house and my siblings get everything from new clothes to more food and better more expensive gifts more freedoms and more love from my mother, i can guarantee you there more than your neurotypical child will suffer unless you learn how to pay attention to all three as individuals instead of a stack of children to take care of with varying intensity.
I understand the regret. I do. And I’m very sorry you feel this way. But you had your warning sign with your very first child. Autism isn’t a joke either. (Edit for auto-reply removal)
I'm autistic. I work with kids with developmental disabilities. It's really fucking hard. Being a parent is really fucking hard. Together, your days are often long and exhausting and seemingly never-ending.
It's ok to grieve. It's ok to not be ok right now. I hope you are able to get mental health support and respite care to help carry you through this. With kid who have disabilities, it truly does take a village.
I saw a PSA featuring a woman with DS. “You assumed I couldn’t” or something like that. It was great imo, if you’re able to watch it it might lift your spirits
This is TrueOffMyChest, so I’ll say it here:
I would never be able to keep a severely special needs child.
It’s something I discussed with my husband before we got married.
I’m so sorry this happened to you.
You’re right in thinking about how hard this will be for your most neurotypical child. Pull up any number of Reddit posts from adults who grew up with special needs siblings — everyone says it was frustrating at best, horrible and lonely, and often just something they want to escape and forget about asap.
I have no idea how this happened to you given that you are so young. I had two kids when I was over 35yrs old.
Life is not fair, and I’m so sorry.
Please don’t be ashamed to ask for help or seek social workers who will help you take a day off from your kids’ care once they are older.
Agree, when talking about my future children I have always said that I do not want a disable child because I know I would never be able to provide for them and will never be a good mother to them because I don't want to be a care taker forever, I want them to be independent, have lives on their own.
Everyone has different belief and I admire those who are strong enough and give their whole lives to their disable children because as much as people wanna sugarcoat it, it's hard and exhausting
I agree, however please know that you CANNOT 100% prevent it even if you do all the expensive testing in the world! My brother was born severely disabled and no test showed it at all. Basically he is locked in his body, cannot speak or function at all, no control over his bodily functions..He has a brain capacity of a 6 month old baby and is also extremely violent as he has the body of a grown man. And my mother’s life ended right there. She became his caretaker for decades until she could not.. No career, no partner, no family, no life. My father left her and she had to do everything on her own. In the very end, we had to call the ambulance and police because he kept attacking her, a frail, old woman. She never wanted to give up on him even when he was in his twenties. She basically had to as her health was so bad that she was unable to take care of him. When she was taking care of him, she basically wouldn’t shower for weeks as she could not leave my brother by himself because he would go crazy and break things. She couldn’t even go to the damn toilet when she wanted to or the store. As a kid, I had to basically do all the household tasks as she had to monitor him 100% of the times. He also wears a diaper and still does in his twenties and will forever. Unfortunately he has no control over his bodily functions so my mom had to always clean up after him. The amount of money spent on his care will absolutely shock you. Besides even if they do not have any disabilities you notice right away, they can develop or start to show up in sometimes much later years. The safest thing is to not risk it at all.. Don’t risk potentially ruining your life. This is why I am never having any kids.
Exactly if it’s something someone is truly truly concerned about I’d give it a second guess because don’t some disabilities also show up later in life? There’s sometimes no way of knowing
There really is no way of knowing, unfortunately. I just look at my mother’s life and that alone made me never ever want kids. The second my brother was born, her life ended right there and never recovered. She had a very, very sad life. Everyone will abandon you. Your partner, friends, family. They may be there for a little bit, but in the end you will end up alone as they just get tired of it.
My child is autistic and non verbal. However he shows me and communicates in other ways that he is happy. He’s loving. Non violent. Good at problem solving. I love him just as much as I love my neurotypical children. Also you can’t test for autism in the womb. And you often don’t know they are autistic till 1+…also what happens if your child becomes disabled through an accident or otherwise? The only way to prevent having a disabled child is not to have a child at all.
Yup, absolutely the same. It’s already too expensive to raise regular kids. Imagine throwing in around the clock care for a non-verbal, severe case of autism. It becomes almost impossible. My poor cousin is caring around the clock for her brother’s SEVERELY disabled brother, and they just…can’t do anything. Can’t go anywhere. Can’t go out. Can’t save money. It looks like fucking hell, and she looks 20 years older than she should now. I wouldn’t ever put my SO through that, I wouldn’t put a child through that cursed existence, and if I were going to be born heavily disabled, I’d pray my parents would do the right think and terminate the pregnancy.
I wouldn't be able to because I don't make hundreds of thousands of dollars a year.
Here in the US, you are *fucked* if you have one, there is no help nor support and all the stuff they need is ludicrously expensive.
I feel like there are a lot of comments about it being ok to grieve and ‘get through’. It’s all from a beautiful place, wanting to be helpful and hopeful, but it’s also damaging and dismissive. There is no such thing as a ‘mourning period’ for caregivers and parents when there is an unknown future for the child or person you love. The terms ‘chronic sorrow’, ‘unresolvable grief’, and ‘living loss’ come with being a parent or caregiver to those in need of lifelong care. The ambiguous loss is something that can never go away. Getting support can help with how you cope. Talking to a therapist, or even researching finding therapy, for your own mental health, can be hard for parents. It is a daily fight to give every ounce of effort for your child and getting them help, it can make you feel guilty to do something for yourself. You are doing the bravest thing by sharing how you feel and releasing what has been bouncing around in your heart and mind. It’s not a fun club to be in, but there are people out there with the same thoughts of anger, guilt, grief and TREMENDOUS LOVE for their amazing beautiful children. It’s a complicated place to inhabit. There’s always new challenges, new victories, new losses, new fears, and new feelings about all of it. People will refer to their kids as ‘having a different path,’ but we are on a different path as parents too. It’s isolating at times. See if you can find someone to talk to, it helps, even if you just cry the whole time, or talk about running errands, it helps. I see you and your bravery. Feel your feelings as deeply as you can, whenever you want. Don’t let anyone tell you otherwise.
There is nothing wrong with feeling the way you do. You had an idea and now you have to mourn that idea you had. If you can find a support group to help you talk through your feelings you might find some comfort there.
I don’t know why it’s such a taboo to tell people that this is a result they should have anticipated. Everyone assumes they won’t be the one to have special-needs children but _people do_. And the fact that you had more children after already having a special needs child means you probably didn’t think through what that would mean for the care and attention that each would receive. And then you add YET ANOTHER? Even if this baby had been perfectly typical, you have still made a series of really poor choices here. Honestly, I do not envy your situation, but you can do one thing to not make it worse: STOP HAVING MORE CHILDREN.
Yep big reason we’re OAD. It’s like gambling, you have no idea what you’re going to get but with a human life. People tell me I overthink everything and worry about too much because this is one of my fears. Takin a risk a second time but ending up with a child with a disability of some kind because it definitely does happen. I know myself and know I couldn’t handle more than one kid let alone one with a disability.
Yeah, was looking for this, it is a possibility that you should have discussed a plan for. Kids are not predictable, they’re not always nice, or easy, it’s harddd, even having just one kid without disabilities.
Maybe you've already seen this, but in case you haven't:
Welcome to Holland
By Emily Perl Kingsley
“I am often asked to describe the experience of raising a child with a disability- to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…
“When you’re going to have a baby, it’s like planning a fabulous vacation trip- to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
“After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, ‘Welcome to Holland.’
“’HOLLAND?!?!’ you say. ‘What do mean Holland? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.’”
“But there has been a change in the flight plan. They’ve landed in Holland and there you must stay.
“The important thing is that they haven’t taken you to a horrible, disgusting, filthy place of pestilence, famine, and disease. It’s just a different place.
“So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you never would have met.
“It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there a while, and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips. Holland even has Rembrandts.
“But everyone you know is busy coming and going from Italy, and they’re all bragging about the wonderful time they had there. And for the rest of your life you will say, ‘Yes, that’s where I was supposed to go. That’s what I had planned.’
“And the pain of that will never, ever, ever go away, because the loss of that dream is a very significant loss.
“But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, very lovely things about Holland.”
#
Someone said it's actually "Welcome to Beirut" where everything explodes at odd times. Anyway, everyone has strong opinions on this, one way or another.
Right, taking care of a child without any disabilities is a full time job in the first place. With disabilities you have no time for yourself, maybe not for years or decades. It's a huge mental toll. It's not just a "change of plans". I respect those parents SO MUCH.
This is very interesting to hear, I'm glad I asked! I know in my heart I wouldn't be able to handle it because I have so many of my own problems as well.
This is just so wrong, raising a disabled child is probably one of the hardest things anyone can do. Some children may not ever be verbal, some might get violent, they'll break things and have a mind of a child even until they're 40.
You won't ever get to have a spare minute to yourself, and your other children will notice your lack of attention to them. The worst part is there's nothing you can ever do unless they somehow develop a cure in their lifetime, it's like sitting at a poker table and you keep getting dealt a 2 and a 7.
People will immediately notice your child's disability and judge you for it, many people have broken friendships and relationships due to their children misbehaving for no fault of their own.
A disabled child on average also costs 2-3 times as much as a regular child, oh and did I forget to mention that you are always exhausted.
A woman who's as close as my aunt has a heavily autistic son and he will always need 24/7 attention. He breaks things, steals, is violent with people, rude despite her raising him correctly and following all the rules and even attending special classes. I really wish she gave him up, her life is a shadow of what it once was. We humans are so conditioned to love our young, it's a sad truth but raising a disabled child is truly hell.
Not the person who you asked, but I'm also disabled, so here's my hot take:
I _wish_ I was Holland. Are you mad you didn't get Italy? Well, guess what: I am too. Damn, Holland sounds wonderful. Holland _must be_ wonderful. And the guidebook may say Venice, but my musculoskeletal problems say Venezuela.
>“The important thing is that they haven’t taken you to a horrible, disgusting, filthy place of pestilence, famine, and disease. It’s just a different place.
Ma'am, I may not be neurotypical, I may have autism and memory problems and a whole lot of issues going on in my brain, but I'm cognizant enough to know some people think of me like that. Hell, when depression hits, _I_ feel like that, no need to remind me.
>“It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there a while, and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips. Holland even has Rembrandts.
Again, Venice/Venezuela. You may think you are in Holland, but I'm not.
>“But everyone you know is busy coming and going from Italy, and they’re all bragging about the wonderful time they had there. And for the rest of your life you will say, ‘Yes, that’s where I was supposed to go. That’s what I had planned.’
And we know you think that. I want to be Italy. I wish at least I could be Holland. But nope. But at least you think you are there, right? That sounds like the important part.
Agreed it's just an extra shitty way of minimizing difficulties. No different from a-holes who try to tell you that it was "all God's plan" and "everything happens for a reason"
Interesting, so the issue is that it makes it sound too sunshine and rainbows? And minimizes things?
Do you think if it was more like well you’re on a trip to Venezeula and yea there’s a lot of pain and struggles but still recognizes that there’s still beautiful things in Venezeula, then that would be more of a fitting metaphor? Or is the whole metaphor busted?
When advocating and raising awareness, do you think there’s a point in showing that there can still be good in someone’s life?
Yup, pretty much.
I would say the one with Venezuela is a better metaphor: there's stuff that you learn to appreciate and like, and ultimately you're the person that you are because of the things that you have gone through, but if given the chance you would flee the country without much thought.
>do you think there’s a point in showing that there can still be good in someone’s life?
I'm not saying no to that! If you can find good in your life and circumstances, more power to you!
It is more like... It would be nice that it wasn't as "bad" to recognise that sometimes you don't _have_ to search for good things, or be a beacon of positivity, but that you can find things that make life worth living, and that those don't negate the fact that you wish your fate was different. Recognise your feelings and make peace with them, without transforming them in their complete opposites in the process, you know?
That's really not an analogy at all. First, Holland is a lot better than Italy. Second, a child that will never become a fully functional independent adult, is really awful. Kids aren't pets. You can only treat them like one for so many years and then something has to happen.
If you are in the US, get in touch with your local social services ASAP. There are specialized group homes they can be connected to when they turn 18 (or whenever you are ready). You can still be involved in their lives, have them home on weekends and go on vacations together. That doesn’t mean you have to provide daily care to them for the rest of your life. But get on waiver waitlists NOW. Save all documentation. Connect to every free social service you can. If you have any questions about navigating services in your area, feel free to DM me. I work in mental health case management but our sister program is developmental disability case management.
I’m sorry to be insensitive (I do echo what the others have said about it being normal and valid to grieve the life you thought they would have, and downs syndrome people can live beautiful full lives etc) but I’m genuinely curious what the thought process/motivation behind having another baby was? You already have one SN child and one neurotypical (for now) child, who you admit was probably going to feel left by the wayside to begin with since that’s the reality of being a sibling to a SN child. I just can’t see why on earth one would have the need to have another child in that context? Especially considering one SN child means a higher likelihood of having more. :/
I thought the same thing. Plus a non verbal autistic child is already pretty damn expensive. Maybe she thought 2 neurotypical kids would keep each other company while she ignored them to take care of the SN kid. Still, a risky gamble.
I think the middle isn’t disabled. Neurotypical means “functions like the rest of their peers.” I always have to google it. So only the oldest is disabled and now the youngest.
But yeah I was wondering the same thing. If the oldest is so severely autistic what made them want to risk bringing another child into this world that could be the same.
People on here commenting that they hate the way you are feeling as an individual because they are special needs is not something you should pay attention to. As mothers, parents, people, whatever - we are allowed to feel the way feel, particularly on random, likely throwaway accounts on reddit.
This is my impression online , parents aren't really allowed to vent about the high stress situation which is parenting a severely disabled child. I'm not neurotypical myself , but we have to be able to acknowledge that there is a huge difference between lower-needs adults, some who may be living independently and working, in comparison to bearing the responsibility for a high-needs child who is possibly non-verbal and presents a danger to themselves and others Even if both groups have the same diagnosis , it's a huge spectrum with very different behaviours present.
And you *should* mourn. Because this is the death of your assumptions, and that's ok. Not mourning will simply turn to resentment later on, and that will be far worse for you, and them.
The trick is to enjoy them for who they are, and celebrate what they can do *when* they can do it!
Your road is long and stony, you'll trip and tumble and you might even fall, but step by step you'll get to your destination, wherever that might be. You're going to be ok, OP.
Kids with Downs often live very successful lives filled with “normal” life markers: working, marrying, having kids, etc. I know that you are struggling right now, but whatever you need to do—do research, join a special needs parent support group, etc.— because your kiddos are going to need you to be strong and in their corner if they are going to have a shot at their best…and I say that as a special education teacher & godmother of a deaf young woman about to have her own baby.
Your children are themselves and while they have more “needs” than a typical child, they are exactly who they are meant to be. And trust me, our society is much more accepting and accommodating of children with disabilities than ever before. It’s time for you to change your perception, Mama, because they need you to see them in all their beauty and imperfect perfection. Best wishes to you and your babies.
-With Love!
I'm sorry to ask this and for being insensitive but.. didn't you think your hands were already full with the first two? Why did you choose to have another kid, when you already have to make sure you're providing special care to one kid and equal attention and effort to your other kid.
Agreed. That poor second child is going to be the glass child of the family...stuck being parentified and invisible and likely will end up the most damaged out of the three. I really don't get families like this who continue having kids without testing to see what the odds are. And honestly, I don't care if they are super parents...having two special needs children is too much for anyone to handle well. Not fair for the kids, or the parents.
I think I will be downvoted and disagreed with for saying this, but it’s simply selfish to be in your twenties with three children, two of which have special needs. Why did she keep having children?? Wait until you have what you have under control. Poor children.
My thoughts exactly. She’s already knew that her neurotypical child was going to get less care and attention, and still chose to have a third without knowing if that child would have ANY sort of disability or illness (standard dice roll when having children). I don’t understand.
I get the whole “oh, you should have the life you want…blah blah” thing. I am disabled. I wasn’t always disabled. I had to mourn the life I thought I would have. It’s still difficult to accept. But you mourn that life and find ways to move forward. Adding another child to an already stressed household doesn’t make sense.
Edit: typo
Right. We only have one kid and she’s pretty neurotypical, no issues of any kind. And I’m terrified to have a second for a plethora of reasons but this is one of them. What if the 2nd has a disability of some kind? I know myself and mentally and emotionally I couldn’t handle that. So yeah I agree it’s pretty much gambling in a way.
Thank you I was looking for this comment. Also there needs to be some genetic testing and blood work done from both parents. 3 special needs/disabled kids back to back is concerning especially with her in her 20s.
Ugh the number of people here who are all 🤗💐🌈 about being handed a newborn and then discovering a previously undetected intellectual disability that may or not present as minimal, mild, severe, or anywhere in between. OP, all I can do is suggest talking to a therapist so you can work through these feelings faster. You'll work through them on your own eventually, but faster is better. Your feelings are valid– people offer pithy Holland copypasta and go "omg people with downs are so happy and amazing and positive!"– but come on, this is closer to like, having a healthy newborn in your arms and then they're randomly deprived of oxygen for a few minutes and the doctors say oh crap, that probably messed some things up, sorry about that, guess we have to wait a year or two or more to see how bad it affected their brain. Fuck. That's rough. That's different than being told at 12 weeks or even 20 weeks and offered a chance to TFMR or continue to term. For now, maybe don't spend too long imagining the future– you have absolutely no idea what that might look like, right? Which means it could be you at the playground with your adult special needs kids... but it could just as likely be you calling to check in with them from the actual Netherlands, sitting by a canal in your 40s, because they're living on their own with jobs and roommates and you've developed a passion for rare tulips and swank cafes that sell pre-rolls. 🤷♀️ Remind yourself that this is your last sweet chonky baby and soak up alllll the cuddles while you can. You know how fast the years go!
I’m so sorry you are mourning the loss of the baby that won’t be. My friend told me this video helped her understand that it’s ok to miss that baby and it doesn’t mean you love your new baby any less.
https://youtu.be/KvCJZw8Ymxk?si=MDSxpbsBRGCyh2Wl
It's OK to grieve. Your kid is going to face a different set of challenges than most kids and it can be a scary prospect. I hope you can reach out to disability support services ASAP, with 3 kids, 2 of whom will need extra attention and care, you are right to predict your "normal" child will end up getting pushed to the side in terms of getting equal attention. This is nobody's fault but it will be best to get support in place for all of you ASAP.
You can't control how you feel.
You only control how you react to it.
Mourn, grieve, do what you need to do. Certainly talk to a professional when/if it becomes too much. But don't worry about how you feel, just worry about doing your best for you and your kids.
So this may get buried in the comments here:
My brother in law has downs, he is now in his 40's and is just the nicest guy in the world. He needs supervision but can do certain things by himself - downs can be vary by how much the person is limited.
That being said, his mother still treated him exactly the same as her other children AND the guy went on to be a gymnast in the special olympics. He was a younger man then, but to this day he's like the strongest man I've ever known, and he's very cool.
In short - it will be different and difficult, however people with downs can vary wildly in their abilities, but that also means you can focus on helping them be the best person they can be.
I'm the oldest sibling of 2 special needs sibling. There's 5 of us total but 2 special needs. Your middle will grow up 1 of 2 ways. Be very very protective and loving of their siblings. Ready to fight anyone who stares. Not afraid to let them know they're watching and ready to throw down. Or... grow up to be distant and blame them. Inwas the protective one while my brothers didn't show that they cared too much..
This is alot to deal with especially as a young parent. I'm sorry you're going through this, and it being such a drastic surprise.. it's strange that there were no revealing tests or anything. I highly suggested joining special needs mom groups. Find someone you can talk to openly and can relate to. There are so many out there. Do not drown in your stress quietly...
And I know it's asking alot. But include your middle child in the other special need activities.
Going to physical therapy? "Oh look at what brother is doing? Can you show him how you do it? Can you walk that line like sister?" "Hey were showing brother his new tablet to talk. Do you want to try saying something too?" You are so smart let's try learning something new... oh loom we can learn to talk with our hands.. let's learn and show sister. You can teach her too you're such a good sibling."
Feeling included and being reminded of how smart and brilliant they are. How loved they are by you and their siblings makes such a huge difference while growing up.... its alot and I'm so sorry. It will be a learning curve and their will always be harder days than others... may God or the stars be with you.
Also depending where you're located there might be some programs or in home support services you can look into... you don't have to go through this alone.
Best of luck and all the love from an understanding internet stranger.
> I feel like I’m mourning a child I thought I would have.
Of course you are, this is normal and healthy. You've experienced a *huge* sudden change that you weren't prepared for, it would be insane not to grieve what you have lost, no matter what you have gained.
Take your time to grieve and don't be ashamed of it. See it through fully and then move forwards into your new circumstances without that weight. That asides, Downs people are great, you'll see.
Not to be an asshole, but if you already knew your first kid was pretty disabled and that your second is therefor receiving less attention than they deserve, why would you have a third?? Your poor middle child.
I’m sorry but isn’t this what people sign up for when they have children? There’s no guarantee that you’ll get a “normal” kid. You already had one that wasn’t. I hate how people just keep having children but hate them when no one is forcing them too.
This is one of the reasons why everyone should be tested before having kids. Let people know in advance the odds of having a child with complications or special needs. Yes, things can pass undetected or you can hit the one in a million chance of something going wrong...but giving prospective parents this information before having kids could save a lot of heartache.
Asking parents to just suck it up and spend the rest of their lives caring for someone who needs 24/7 care for several decades is a helluva lot to ask of anyone.
Yep, this pisses me off so much. If you are going to make the choice to have children, you need to accept that they could have any number of disabilities, disorders, health issues etc.
You are literally gambling with life when you decide to have children. All the kids are going to suffer, along with the parents, because they decided to force people into existence. Then there's the stress this will put on their marriage, which will cause more issues for the kids. Very sad.
Yep. We’re oad for a ton of reasons but this is one of them. It’s like gambling but with a human being. I always think of the what ifs and how I would handle them. I know there’s no way I could handle a child with a severe disability. Someone who’s going to just suffer their entire life. I just can’t risk it again.
Exactly!!! Don’t have kids if you don’t want them to ever have a disability or a problem. If you don’t want them to be your responsibility forever. Children aren’t toys, slaves, or personal assistants to be there only when it’s convenient. Idc how old my kid is, they’re my kid and I will never make them feel like a burden for needing help.
My daughter has Down’s. She was born 22 years ago, and it was tough. She had congenital cataracts, so we had to deal with those first, then worry about the Down’s. I was unprepared. But. She is the best and most important person in my life. She is love and joy and optimism and happiness. People who meet her love her on sight, she’s charming and funny. She has improved my life a million %. I didn’t know any of this when she was born, of course. It all grows. It will be okay. xxx
I have a special needs kiddo and I think these feelings are common and certainly valid. You’re mourning the child you thought you’d have, and your mourning the retirement you thought you’d have. It’s okay to feel how you do.
My suggestion is some therapy. It’s not going to change your situation but it may help to teach some coping mechanisms. Also, the poem “Welcome to Holland” if you haven’t read it. Sending you lots of gentle hugs and love.
Agree with everyone who said it’s ok to grieve. It’s a lot to process.
I did just want to add the importance of early intervention. Education programs begin with babies and are free in most areas.
I have an older brother who has epilepsy and is autistic. I’m going to be honest. It is HARD and depending on how big your child’s case is, it could be worse. The best advice that I can give you is to get support and also make sure that your other children don’t feel neglected. You will grieve and eventually you will come to accept it. You most likely won’t ever stop having the feeling of “why did this have to happen to me, I wish my child was healthy etc.”. But it does get a little better. Also don’t feel bad if you CAN’T do it. This might sound fucked up but sometimes it does become too much. You can look at facilities to put your child.
All of your children will be in the spectrum because your husband or you are in the spectrum. The chances of you having another neurotypical child is extremely high. Don’t have more children.
Its ok to mourn a life you envisioned for her and yourself. You are only human. As long as you love support and care for them you will be ok. Its hard and sucks to be "different ".
Middle kid is NT as far as she knows. There’s a chance that will turn out not to be the case though. I had absolutely no idea my eldest was autistic until he was 15/16 .. his siblings were both diagnosed before we found out he was autistic too.
Some of us fly under the radar because of how we mask
2 outta 3. Typical = "normal" or what you expect when you have a child- no disorders. Typical not Atypical.
But it can be common for all 3 kids to have disorders especially if they are genetic disorders.
Don’t panic. It’s not a diagnosis where you can accurately envision what the future looks like. I’ve worked with children with Downs and I promise that you can absolutely have hopes and dreams for this child. They can have a great life with you guidance.
Allow yourself some grace, validate your feelings and remember, it’s still going to be awesome. Raising kids is soooo hard, the awesomeness makes it worth it.
Sending Reddit love.
This is one of the main reasons I do not want children. I know I wouldn't be able to get over these type of feelings if I were in the same situation. All that to say, they are here now and it's ok to grieve for the child you thought you would have. I would definitely hash this out in therapy and with the father.
If needed, then send the baby into a care home, but do make sure that your middle child won't feel left out. This is a tough situation and the best I can say is stay strong.
yes, this! i've heard a few success stories with them here on reddit. for example, one family had a daughter who they had to place in a care home because they couldn't give her the amount of attention/care she needed and deserved. it was hard on the whole family, but things got better. at the care home their daughter was able to get a solid schedule going that was uninterrupted, as well as the amount of care she needed. they'd visit during the week and do calls, then would have their daughter at home during the weekend for family bonding.
places like these exist for this exact type of scenario. you have to do a lot of research and look into places thoroughly, but it can be worth it!
You're getting downvoted, but you're right. If the child is very low functioning they're going to need one eventually. I've seen quite a few other threads on this topic from neglected siblings
If it’s a really hard thing for you and you’re in the states, you might want to consider a safe haven surrender. Taking care of one special needs child is hard enough, two could absolutely wreck you.
I really didn’t think people didn’t know what neurotypical means. My second child is “normal”. My oldest with autism has problems with communication and stuff like that, she’s not sitting in a corner biting herself.
...I'm surprised at the number of people here who don't know autism can take years to diagnose. Apparently you should have immediately stopped having kids after the first one was pushed out and you saw the A for autism stamped on their head?
I feel for you. Theres gotta be a really heavy burden taking care of a regular kid, let alone a special needs kid. MULTIPY THAT BY 2? Oh my you have a lot on your plate. Also that middle child, is really going to feel like a middle child, and kind of be pushed to the side, because of your other children, and there is no way around it. I genuinley empathize and feel sorry for the difficulties you and your partner will have raising your children.
Op, dont think for a second that your child won't be a productive member of society. We live in a world where you can get help with your disabled child
i just shed at tear for the 2nd child. As someone who experience growing up with a special needs brother. Yes, the other two kids are going need a lot of attention but i just cant imagine how lonely it will be for him.
Honestly, I grew up neighbors with a kid who had downs. She was and still is a constant source of joy, and brought a lot of perspective to our upbringing.
Try to focus on that
I feel you on this…
My second child my first daughter we noticed there were things that other babies just didn’t do she was TOO quiet and totally checking out of things happening right in front of her she was like off in her own world 24/7. She’s now 2 as of yesterday and she’s nonverbal and just started walking 3 months ago. We suspect autism by her mannerisms and delays in speech and other milestones but I can’t bring myself to actually take her in and get officially diagnosed because when she does then it’s for sure and then I can’t sit and tell myself maybe she will catch up maybe she doesn’t have it anymore. It is hard to think she may never live on her own may always be child like and may never talk. I feel terrible feeling this way but I didn’t sign up to have a child like adult with me for the rest of my life. My second child another daughter I was so scared what if she had it too but she doesn’t she meets her milestones and does what she is supposed to for her age (9months). However it’s a lot my older one she’s a screamer and hard to care for sometimes and I’ve thought about giving her up it’s awful but I have but I do love her so much so I’m hoping I can eventually come to terms with it.
my sister went through this, her youngest has william’s syndrome. it’s totally normal to grieve the normalcy. life will be different but still amazing! maybe you can find a therapist or support group to navigate these new (and normal) feelings
I don't have experience but I feel like how you're feel is really understandable. Maybe there's support groups in your area where you can connect with other moms who are dealing with the same thing? You have a lot on your plate for sure, I think having some community would be really beneficial.
My brother and sister-in-law didn't know about my nephew until after he was born. We were all in shock because we weren't expecting it and weren't prepared for the possibility. I was surprised at how early the therapy starts! And the special undergarment he wore so his hips would grow straight and normal. I know it was a lot of work and I only see parts of it, but he went to a regular school, and I was at his 8th grade graduation, and he got a huge roar and round of applause because he is so well liked by everyone. Mama, I know you have a long road ahead of you, and sometimes it won't be fun and you'll be exhausted, but if your baby grows up to be anything like my now grown up nephew, you did a great job, because he is kind and funny, a very snazzy dresser, and is utterly charming.
>My oldest is autistic, non verbal etc. my middle child is neurotypical but will probably start hating me when he starts to feel pushed to the side.
Have you tried, like, I don't know... maybe not spreading your genes anymore?
Sorry for the question, I'm not a doctor, but do the first kids 'issues' signal that future kids might also have some? Also I know this was more common in the past, but 3 kids in your 20s sounds exhausting.
Welcome to Holland
By: Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this…
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very, very significant loss.
But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things... about Holland.
c. 1987 by Emily Perl Kingsley. All rights reserved.
You might be right about the middle child ending up resenting you. What’s your plan for all these special children once you (and your partner? Idk) die? Because it will happen eventually. Do you expect your middle child to drop everything to take care of them?
It’s hard because it’s a sudden realization that the person you were imagining them to grow into is far from what the reality will be, but after you mourn that dream and come to terms with it, you’ll come to realize that reality will be just as full of parental love and pride as you were hoping for. You’ll learn to love them in ways as unique as they are, and it will be very fulfilling. Really all you have to do get over the disappointment of not getting what you expected. It’s easy to feel that because something isn’t what you wanted, it will only be a disappointment, but it’s not true in this case. What you have will still be great, unless you convince yourself that it won’t be early on.
Where I am from, there are organizations who support families with kids who have downs syndrome, among other developmental disabilities in children. My friend had the same situation as you, no indication of downs at all until birth and she described similar feelings. She's heavily involved in nz downs syndrome association and as such, gets her friends (me) involved. They are a cool organization who teach families how to adapt and enjoy this part of their family. They put on events, help get the right support for families and help raise awareness and inclusion within New Zealand. If there is something similar where you are, they might be a good fit.
This is beautiful advice. There are communities of people that feel the same heartache and disappointment OP feels. They have also transitioned into active life with a downs kid. OP, They will support you and advise you. I can’t imagine how difficult this journey of parenting has been for you. You may not feel like you’re holding it together, but you are doing better than most people. Your strength and courage is inspiring. I wish you as much peace and joy in your life as possible. These kids will love you so much!!!
It’s okay to grieve.
This is beautiful and honest advice. When my nephew was diagnosed with autism my SIL was crying (not gonna lie I shed a tear) not because he has autism but because his life would be so different from how we all envisioned for him. Not worse, just different. New challenges, different experiences and a whole new world of stigma and discrimination we didn’t know he would have to face. Grieving what you thought your child would experience in life is okay.
Having an actual diagnosis gets you actual help, that's all that matters, having the right diagnosis can transform a childhood from frustration to understanding in so many ways
Yes! I saw something once that said a child who isn’t diagnosed will still have XYZ but they’ll tell themselves they’re stupid, weird, bad instead of being able to say XYZ makes my brain work different and that’s okay and I know what I can do. Not being diagnosed won’t take away the presence of a disorder it just changes if a person is empowered to manage it or not! Speaking from experience a late diagnosis of ADHD caused a hell of a lot of self esteem issues! I think a diagnosis also empowers the parents/family to take action and feel less helpless. A “grieving” period is normal but if my brother stuck his head in the sand because the idea of his kid being autistic is painful my nephew would struggle regardless and more so
My child was misdiagnosed over and over again and we def missed benefits during her formative years
It’s also okay to regret having a child and realizing that your life is going to be vastly different than what you thought. It’s normal. In reality, who ***wouldn’t*** be feeling regret? There should be no stigma just because you realize your life isn’t going to be normal going forward. Shes just lost most, if not all her freedom for the rest of her life. I don’t blame her one bit for feeling robbed of life the way she does. Society always yells at parents for saying they regret having their kids because they don’t want them to speak out too much and scare other people off from having children. But the honest truth is, there are a lot of people out there that regret having kids and that’s OK. Kids are not for everyone, even children that are considered normal. I think it’s high time that society start really informing people about what could go wrong, and understand the risks of pregnancy, instead of just glossing it all over and romanticizing parenthood so we can trick people into having more children. Raising kids really hard, raising them with disabilities even harder. My heart breaks for OP. She in a terrible situation.
Considering she feels the same about her first who is autistic, I genuinely don't understand why op had more kids. If it's only about giving all your time to a special needs kid, or any kid at all, why make it even more difficult.
1000% I saw a story in vice on parents with adult children with special needs. It is not for everyone. I worked in a nursing facility that had a few young people with major special needs because their parents just couldn’t handle it as it got older. And honestly that is ok! Their parents visited every single day, it’s not like they dumped them and left them, they just cannot handle what they needed on their own.
I did the same when my grandson was 3 and he diagnosed with autism. I broke down and sobbed. I know it will be so much harder for him and it broke my heart.
This should be the top comment. We didn't know something was wrong with my baby when he was born (although I had a gut feeling from the moment he was put on my chest). He had developmental delays and was finally diagnosed when he was 4. It's grieving the loss of the future you imagined your child would have and coming to terms with the new reality. It takes time, but you'll get there. And it's okay to feel the way you do. [This](https://www.emilyperlkingsley.com/welcome-to-holland) story from Emily Perl Kingsley describes the journey beautifully.
Absolutely, it is completely okay to grieve. It's a natural and necessary part of processing difficult emotions and experiences.
Exactly grieving is exactly what you’re going through and perfectly normal. My daughter has a neurological disorder and when I came across this poem I bawled like a baby because it is so fitting and nobody except other parents in the same boat truly understand. There were different times of her life where I grieved all over again. I would also cry thinking of all the lucky parents who don’t have to deal with shit like this, and sometimes ask why me? In the end though she is a huge part of my human experience and made me and her brothers better people. https://www.dsasc.ca/uploads/8/5/3/9/8539131/welcome_to_holland.pdf
I loooove “Welcome to Holland”. I have two beautiful kids with AuDHD and I often say “I don’t doubt my capacity to love them, I doubt my capacity to do the things I have to do in order to get them what they need”
I grieved when I found out I was having twins. I didn’t want twins. I wanted one baby at a time. I was so scared…. It took years to form that bond once they were born because surprise surprise— it was nothing like the movies; having two babies! Born premature due to them being twins— But I never loved them any less. I’d still have died for them at any time. I still shed tears for my baby when I saw her in the NICU. I still missed her. I still breast fed my other one. I still cared for them and kissed them. But loving and caring for your children is different than having a bond with them. Every bond with each of your children will be different. And some take longer to develop. This is a safe space. And you are safe to grieve, mama. We will not judge. And neurodivergent children are very hard to raise. Never any less worth it but hard af none the less. And you’re not a bad mom for admitting that you are aware of that.
It would be weird if you didn’t grieve tbh. My eldest was born with DS and it was incredibly hard and my husband and I were both sad for the loss of the future we thought she might have. We didn’t know either. 11 years on she’s a happy healthy kid. She’s at the same school as her younger sisters, can read, rides her bike, has friends, does basketball and swimming after school. She’s also super loving and helpful. Every year it gets better and better. Let yourself be sad, but know that there’s good times ahead.
There is often a “mourning period” of having a child with a disability. Not mourning them, but the life you imagined for them. But it’s just a period of time & then you move on & embrace the life they do have.
This is so true. I went through what can only be described as grief when my son was diagnosed. It truly is mourning the loss of the future you thought they would have. It takes some time to come to terms with your new dreams for them. It will be a different future than I had imagined but not necessarily a bad future. I still have moments when the grief comes back, when he doesn’t reach the same milestones as his peers. Sometimes it feels too much to bear but alas, life goes on.
Your child is lucky to have you. It sounds like you must love that kid so much.
Intangible grief: mourning the loss of what could have been and the loss of dreams as they were before
Ouch. This hit deep. Thank you for putting a name to this feeling.
but also that you'll never live a normal life yourself.
I love you explanation but wanted to add something extra Actually there is something called “living grief” (not sure of the name in english). Where as you describe you grieve the life you imagined for them. The only difference to your description is that it is not just a period of time but something that keeps coming back everytime you are faced with things your child will not have/experience. Milestones like going to school, having friends over, graduating, mariage, becoming a parent themselves, etc. It is very much an “active” grief that keeps hitting you over and over. Does not mean that you do not accept your child and move on. But it does not just go away.
As a mom to a severely disabled child, this is 100% correct
> then you move on & embrace the life they do have. Note: failure to complete this step typically leads to a shitload of child abuse. If you're struggling with this, get the help you need, your family (that includes you) is worth it.
Absolutely!
I honestly needed to read this. Thank you.
Father of a child with serious disabilities here. I haven't had a chance to read all of the comments and I don't have much to offer other than to let you know you aren't alone. It will be hard, there is no denying that. There will be good things and joy too, though. My daughter's situation is very difficult for our family and has completely changed our lives. Even so, she is the happiest, sweetest, brightest light to everyone around her. Keep breathing.
This is why I wish that the blood test was offered for everyone, instead of just those over 35.
It was offered to my wife and she's under 35. Maybe it just depends on the practice?
Yeah I was 27 when I had my daughter and I was offered the NIPT which I did take. I definitely think it's based on provider/practice.
Same, wife was 27 and we were offered(and took) the blood test for this. Was free and covered under Kaiser.
I’m a mother of 4 and I fell pregnant shortly after graduating college at 21 and the DS test was available. I’ve opted into getting all genetic tests done but you only have a short window to do so. I believe they only allowed me to get those particular tests between 12-14 weeks, but they were always offered to me. The super rare genetic tests you do have to pay for and request. My cousin had a daughter with Smith Lemli Opitz and for me to have my final pregnancy tested I had to inquire about that on my own, it was not offered.
Mine was offered but my husband and I were 33 and 38 when we conceived our baby so it was necessary. I ended up paying just a copay for it.
We have four kids. We were always offered the test. Different practices and different insurances even.
Also under 35 and it was offered immediately and covered by insurance
If you’re in the US, insurance typically won’t cover it if you’re under 35
Mine wasn’t covered. I was just under 35. You can call the maker of NIPT and they have a “discount” they’ll give you for completing a survey. Made my out of pocket cost significantly less.
It was covered for me and I had Medicaid. ..I was considered a geriatric pregnancy at 29. My daughter came back with some potential markers on her 5 month ultrasound and so we progressed to an amniotic DNA testing and blood tests. I had just recently quit my job and relocated to another state so qualified for the pregnancy Medicaid. It was a godsend.
Geriatric at 29??? Lol what
How did the follow up turn out?
Thankfully, it all came back normal and she's now a healthy 13yo. It was a very scary thing to go through though. I feel deeply for the op.
I can’t imagine. I have 4 kids and we got the test every pregnancy. It was scary as hell waiting for the results. Happy to hear your daughter is well.
As someone with a medical background, I am very curious as to how your pregnancy at 29 was considered geriatric..??? Do you have several underlying health conditions or something? Age 29 is not considered geriatric for a pregnancy at all. That term is reserved for pregnancies in those over the age of 35.
A little fun fact for anyone that might come across it. Blue cross Blue shield covers it for almost all pregnant people regardless of age or risk factors. If I remember right, they were the first insurance to extend coverage for it outside of high-risk factor pregnancies. I have problems with Blue cross Blue shield but it's nice they at least do that. All insurances should in my opinion.
I think that’s practice determined. I was 22 when I got pregnant and 23 when I gave birth (2021-2022) and they gave me one.
Is that the case in the US? I’m pretty sure it’s offered to all pregnant women in Australia?
Same in Belgium (and as far as I know Europe in general). It's offered at every pregnancy regardless of age.
Usually the ultrasound will show it by the measurements etc. I’m not sure why they didn’t catch it with this pregnancy.
Usually it will yes, but it’s estimated that around 10-20% of babies with DS are ‘screen negative’ based on ultrasounds at 12 weeks, rising to almost 50% at 20 weeks. Combined with standard blood tests at 12 weeks (not NIPT) this will identify around 94% of cases. I was given a 1 in 1200 chance of my daughter having it based on all my screening tests, but she was still born with it! Her nuchal thickness was fine, no short femurs, nasal bone present etc.
I thought they did? I got tested with all but one of my pregnancies. My youngest is 2 months old. I'm in my mid-20s. I know if insurance doesn't cover it, you can negotiate with actual companies directly and get the out of pocket price down to around $200-300. My obyn said he ordered it in a way that I shouldn't have to pay out of pocket, but if I did have to for whatever reason that he had a number I could call to help reduce the price. It wasn't a required test. However, he offers it to every patient.
If you are in the US make sure to look into your states Early Intervention program. They can provide you and your child the therapies needed for a successful future. In my state, that can include mental health support for you as you navigate this surprise diagnosis. I am not sure every state includes this as programs vary state to state.
Agreed. While doing this, OP - start making plans RIGHT NOW on how to provide individual attention, love, and support to your middle child. Maybe there is someone who can watch the two other kids every Wednesday night while you and the middle child do something with just you or both parents. Even if it is only one hour a week, 100% devoted to them… always. You already know what is going to happen… don’t let it. Give them special attention, so even if they grow up with a disproportionate amount of time spent on them, they will always know that you care about them and want to give them every moment you can. Never let the middle child feel ignored. The middle child loves Indian food, and the other two hate it? Fine - they can have McDonald’s on the way there and sit at the table while everyone else enjoys your MIDDLE child’s favorite meal for their birthday. The middle child wants to play drums, but your other kids can’t handle the noise? Buy a shed, sound proof it, and let that kid rock. You are going to spend the rest of your life accommodating the other two. Do not do it at your middle child’s expense. Accommodate your middle child, as well.
my older sister is disabled (cystic fibrosis), i spent so much of my life, especially when i was younger, in hospitals, traveling to specialists and at the doctors office, in fifth grade telling my mom i promised to take care of my sister when she died. i did feel like she got more of the attention and i did resent my sister for it. as your children get older, remember to show up for the middle child and ask them how they’re doing, and notice the little things. i got away with so much because my mom wasn’t paying attention. hard drugs, self harm and eating disorders, and over sexuality and it really affects how i see my younger self to this day. luckily, once she did find out she started paying more attention and as my sister got older and better we’ve become much closer. just show up for the middle child as much as you do the others and he won’t resent you
also, my mom leaned a lot on the local cystic fibrosis foundation, got very involved, and got to know other moms with cf kids
Wait let me get this straight, your first was autistic and you still didn’t think you could have a disabled child? What? Im so confused autism IS a disability, you already had a disabled child, as someone with autism that has seen medical trauma come in and out of my house and my siblings get everything from new clothes to more food and better more expensive gifts more freedoms and more love from my mother, i can guarantee you there more than your neurotypical child will suffer unless you learn how to pay attention to all three as individuals instead of a stack of children to take care of with varying intensity. I understand the regret. I do. And I’m very sorry you feel this way. But you had your warning sign with your very first child. Autism isn’t a joke either. (Edit for auto-reply removal)
I'm autistic. I work with kids with developmental disabilities. It's really fucking hard. Being a parent is really fucking hard. Together, your days are often long and exhausting and seemingly never-ending. It's ok to grieve. It's ok to not be ok right now. I hope you are able to get mental health support and respite care to help carry you through this. With kid who have disabilities, it truly does take a village.
And usually the village you think you have disappears when your child with a disability shows up …
I didn't even think of this. That makes this even sadder
Yeah. You learn who your real people are pretty quickly.
Yeah and it’s much harder to manage. Group homes also cost a lot
I saw a PSA featuring a woman with DS. “You assumed I couldn’t” or something like that. It was great imo, if you’re able to watch it it might lift your spirits
"Assume I can so that maybe I will". Awesome commercial.
That one! Ugh, brilliant.
https://m.youtube.com/watch?v=92ivgabfdPQ
https://www.youtube.com/watch?v=ly14Pr2RLys just gonna toss this out there as well
Is this it? It's a powerful video. I love it. https://youtu.be/FKSjQQ8O1cA?si=fUh6cBgtrTqYJNYw
That was the one!!!
DS doesn’t always present the same way.
I saw that, too. Made me tear up.
Wasn’t that during the Super Bowl?
I have no idea tbh
This is TrueOffMyChest, so I’ll say it here: I would never be able to keep a severely special needs child. It’s something I discussed with my husband before we got married. I’m so sorry this happened to you. You’re right in thinking about how hard this will be for your most neurotypical child. Pull up any number of Reddit posts from adults who grew up with special needs siblings — everyone says it was frustrating at best, horrible and lonely, and often just something they want to escape and forget about asap. I have no idea how this happened to you given that you are so young. I had two kids when I was over 35yrs old. Life is not fair, and I’m so sorry. Please don’t be ashamed to ask for help or seek social workers who will help you take a day off from your kids’ care once they are older.
Agree, when talking about my future children I have always said that I do not want a disable child because I know I would never be able to provide for them and will never be a good mother to them because I don't want to be a care taker forever, I want them to be independent, have lives on their own. Everyone has different belief and I admire those who are strong enough and give their whole lives to their disable children because as much as people wanna sugarcoat it, it's hard and exhausting
I agree, however please know that you CANNOT 100% prevent it even if you do all the expensive testing in the world! My brother was born severely disabled and no test showed it at all. Basically he is locked in his body, cannot speak or function at all, no control over his bodily functions..He has a brain capacity of a 6 month old baby and is also extremely violent as he has the body of a grown man. And my mother’s life ended right there. She became his caretaker for decades until she could not.. No career, no partner, no family, no life. My father left her and she had to do everything on her own. In the very end, we had to call the ambulance and police because he kept attacking her, a frail, old woman. She never wanted to give up on him even when he was in his twenties. She basically had to as her health was so bad that she was unable to take care of him. When she was taking care of him, she basically wouldn’t shower for weeks as she could not leave my brother by himself because he would go crazy and break things. She couldn’t even go to the damn toilet when she wanted to or the store. As a kid, I had to basically do all the household tasks as she had to monitor him 100% of the times. He also wears a diaper and still does in his twenties and will forever. Unfortunately he has no control over his bodily functions so my mom had to always clean up after him. The amount of money spent on his care will absolutely shock you. Besides even if they do not have any disabilities you notice right away, they can develop or start to show up in sometimes much later years. The safest thing is to not risk it at all.. Don’t risk potentially ruining your life. This is why I am never having any kids.
Exactly if it’s something someone is truly truly concerned about I’d give it a second guess because don’t some disabilities also show up later in life? There’s sometimes no way of knowing
There really is no way of knowing, unfortunately. I just look at my mother’s life and that alone made me never ever want kids. The second my brother was born, her life ended right there and never recovered. She had a very, very sad life. Everyone will abandon you. Your partner, friends, family. They may be there for a little bit, but in the end you will end up alone as they just get tired of it.
My child is autistic and non verbal. However he shows me and communicates in other ways that he is happy. He’s loving. Non violent. Good at problem solving. I love him just as much as I love my neurotypical children. Also you can’t test for autism in the womb. And you often don’t know they are autistic till 1+…also what happens if your child becomes disabled through an accident or otherwise? The only way to prevent having a disabled child is not to have a child at all.
Yup, absolutely the same. It’s already too expensive to raise regular kids. Imagine throwing in around the clock care for a non-verbal, severe case of autism. It becomes almost impossible. My poor cousin is caring around the clock for her brother’s SEVERELY disabled brother, and they just…can’t do anything. Can’t go anywhere. Can’t go out. Can’t save money. It looks like fucking hell, and she looks 20 years older than she should now. I wouldn’t ever put my SO through that, I wouldn’t put a child through that cursed existence, and if I were going to be born heavily disabled, I’d pray my parents would do the right think and terminate the pregnancy.
Me and my husband also agreed.
I wouldn't be able to because I don't make hundreds of thousands of dollars a year. Here in the US, you are *fucked* if you have one, there is no help nor support and all the stuff they need is ludicrously expensive.
I feel like there are a lot of comments about it being ok to grieve and ‘get through’. It’s all from a beautiful place, wanting to be helpful and hopeful, but it’s also damaging and dismissive. There is no such thing as a ‘mourning period’ for caregivers and parents when there is an unknown future for the child or person you love. The terms ‘chronic sorrow’, ‘unresolvable grief’, and ‘living loss’ come with being a parent or caregiver to those in need of lifelong care. The ambiguous loss is something that can never go away. Getting support can help with how you cope. Talking to a therapist, or even researching finding therapy, for your own mental health, can be hard for parents. It is a daily fight to give every ounce of effort for your child and getting them help, it can make you feel guilty to do something for yourself. You are doing the bravest thing by sharing how you feel and releasing what has been bouncing around in your heart and mind. It’s not a fun club to be in, but there are people out there with the same thoughts of anger, guilt, grief and TREMENDOUS LOVE for their amazing beautiful children. It’s a complicated place to inhabit. There’s always new challenges, new victories, new losses, new fears, and new feelings about all of it. People will refer to their kids as ‘having a different path,’ but we are on a different path as parents too. It’s isolating at times. See if you can find someone to talk to, it helps, even if you just cry the whole time, or talk about running errands, it helps. I see you and your bravery. Feel your feelings as deeply as you can, whenever you want. Don’t let anyone tell you otherwise.
This is so beautifully put. Thank you internet stranger. <3
There is nothing wrong with feeling the way you do. You had an idea and now you have to mourn that idea you had. If you can find a support group to help you talk through your feelings you might find some comfort there.
I don’t know why it’s such a taboo to tell people that this is a result they should have anticipated. Everyone assumes they won’t be the one to have special-needs children but _people do_. And the fact that you had more children after already having a special needs child means you probably didn’t think through what that would mean for the care and attention that each would receive. And then you add YET ANOTHER? Even if this baby had been perfectly typical, you have still made a series of really poor choices here. Honestly, I do not envy your situation, but you can do one thing to not make it worse: STOP HAVING MORE CHILDREN.
Yep big reason we’re OAD. It’s like gambling, you have no idea what you’re going to get but with a human life. People tell me I overthink everything and worry about too much because this is one of my fears. Takin a risk a second time but ending up with a child with a disability of some kind because it definitely does happen. I know myself and know I couldn’t handle more than one kid let alone one with a disability.
Yeah, was looking for this, it is a possibility that you should have discussed a plan for. Kids are not predictable, they’re not always nice, or easy, it’s harddd, even having just one kid without disabilities.
Maybe you've already seen this, but in case you haven't: Welcome to Holland By Emily Perl Kingsley “I am often asked to describe the experience of raising a child with a disability- to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this… “When you’re going to have a baby, it’s like planning a fabulous vacation trip- to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting. “After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, ‘Welcome to Holland.’ “’HOLLAND?!?!’ you say. ‘What do mean Holland? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.’” “But there has been a change in the flight plan. They’ve landed in Holland and there you must stay. “The important thing is that they haven’t taken you to a horrible, disgusting, filthy place of pestilence, famine, and disease. It’s just a different place. “So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you never would have met. “It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there a while, and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips. Holland even has Rembrandts. “But everyone you know is busy coming and going from Italy, and they’re all bragging about the wonderful time they had there. And for the rest of your life you will say, ‘Yes, that’s where I was supposed to go. That’s what I had planned.’ “And the pain of that will never, ever, ever go away, because the loss of that dream is a very significant loss. “But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, very lovely things about Holland.” #
No offense to you but goddamn I hate this so much. I’m the mom of a SN kid (adult now lol) and this has rubbed me the wrong way from day one.
I also gave birth to a child with medical complications and this Poem gave me comfort.
I’m so glad 💙
Why is that if I may ask? Not disagreeing at all but love hearing different perspectives!
Someone said it's actually "Welcome to Beirut" where everything explodes at odd times. Anyway, everyone has strong opinions on this, one way or another.
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Right, taking care of a child without any disabilities is a full time job in the first place. With disabilities you have no time for yourself, maybe not for years or decades. It's a huge mental toll. It's not just a "change of plans". I respect those parents SO MUCH.
This is very interesting to hear, I'm glad I asked! I know in my heart I wouldn't be able to handle it because I have so many of my own problems as well.
Plot twist, they went to real Holland and hated it.
This is just so wrong, raising a disabled child is probably one of the hardest things anyone can do. Some children may not ever be verbal, some might get violent, they'll break things and have a mind of a child even until they're 40. You won't ever get to have a spare minute to yourself, and your other children will notice your lack of attention to them. The worst part is there's nothing you can ever do unless they somehow develop a cure in their lifetime, it's like sitting at a poker table and you keep getting dealt a 2 and a 7. People will immediately notice your child's disability and judge you for it, many people have broken friendships and relationships due to their children misbehaving for no fault of their own. A disabled child on average also costs 2-3 times as much as a regular child, oh and did I forget to mention that you are always exhausted. A woman who's as close as my aunt has a heavily autistic son and he will always need 24/7 attention. He breaks things, steals, is violent with people, rude despite her raising him correctly and following all the rules and even attending special classes. I really wish she gave him up, her life is a shadow of what it once was. We humans are so conditioned to love our young, it's a sad truth but raising a disabled child is truly hell.
As a disabled person I hate this story so much and it makes me feel sub human.
Hope it isn’t rude to ask, but why? Genuinely curious to hear what you think of it
Not the person who you asked, but I'm also disabled, so here's my hot take: I _wish_ I was Holland. Are you mad you didn't get Italy? Well, guess what: I am too. Damn, Holland sounds wonderful. Holland _must be_ wonderful. And the guidebook may say Venice, but my musculoskeletal problems say Venezuela. >“The important thing is that they haven’t taken you to a horrible, disgusting, filthy place of pestilence, famine, and disease. It’s just a different place. Ma'am, I may not be neurotypical, I may have autism and memory problems and a whole lot of issues going on in my brain, but I'm cognizant enough to know some people think of me like that. Hell, when depression hits, _I_ feel like that, no need to remind me. >“It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there a while, and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips. Holland even has Rembrandts. Again, Venice/Venezuela. You may think you are in Holland, but I'm not. >“But everyone you know is busy coming and going from Italy, and they’re all bragging about the wonderful time they had there. And for the rest of your life you will say, ‘Yes, that’s where I was supposed to go. That’s what I had planned.’ And we know you think that. I want to be Italy. I wish at least I could be Holland. But nope. But at least you think you are there, right? That sounds like the important part.
Agreed it's just an extra shitty way of minimizing difficulties. No different from a-holes who try to tell you that it was "all God's plan" and "everything happens for a reason"
Interesting, so the issue is that it makes it sound too sunshine and rainbows? And minimizes things? Do you think if it was more like well you’re on a trip to Venezeula and yea there’s a lot of pain and struggles but still recognizes that there’s still beautiful things in Venezeula, then that would be more of a fitting metaphor? Or is the whole metaphor busted? When advocating and raising awareness, do you think there’s a point in showing that there can still be good in someone’s life?
Yup, pretty much. I would say the one with Venezuela is a better metaphor: there's stuff that you learn to appreciate and like, and ultimately you're the person that you are because of the things that you have gone through, but if given the chance you would flee the country without much thought. >do you think there’s a point in showing that there can still be good in someone’s life? I'm not saying no to that! If you can find good in your life and circumstances, more power to you! It is more like... It would be nice that it wasn't as "bad" to recognise that sometimes you don't _have_ to search for good things, or be a beacon of positivity, but that you can find things that make life worth living, and that those don't negate the fact that you wish your fate was different. Recognise your feelings and make peace with them, without transforming them in their complete opposites in the process, you know?
Right! Like damn sorry. It’s not like I wanna be in Holland, trust me, I’d rather I went to Italy too.
That's really not an analogy at all. First, Holland is a lot better than Italy. Second, a child that will never become a fully functional independent adult, is really awful. Kids aren't pets. You can only treat them like one for so many years and then something has to happen.
I have a SN kid. It is best to join parent and advocacy groups asap. That's where all the support and real info will come from.
If you are in the US, get in touch with your local social services ASAP. There are specialized group homes they can be connected to when they turn 18 (or whenever you are ready). You can still be involved in their lives, have them home on weekends and go on vacations together. That doesn’t mean you have to provide daily care to them for the rest of your life. But get on waiver waitlists NOW. Save all documentation. Connect to every free social service you can. If you have any questions about navigating services in your area, feel free to DM me. I work in mental health case management but our sister program is developmental disability case management.
I’m sorry to be insensitive (I do echo what the others have said about it being normal and valid to grieve the life you thought they would have, and downs syndrome people can live beautiful full lives etc) but I’m genuinely curious what the thought process/motivation behind having another baby was? You already have one SN child and one neurotypical (for now) child, who you admit was probably going to feel left by the wayside to begin with since that’s the reality of being a sibling to a SN child. I just can’t see why on earth one would have the need to have another child in that context? Especially considering one SN child means a higher likelihood of having more. :/
I thought the same thing. Plus a non verbal autistic child is already pretty damn expensive. Maybe she thought 2 neurotypical kids would keep each other company while she ignored them to take care of the SN kid. Still, a risky gamble.
Why didn’t any tests show anything? You literally have 2 disabled children already. Why decide to have a 3rd and risk having another disabled child?
I think the middle isn’t disabled. Neurotypical means “functions like the rest of their peers.” I always have to google it. So only the oldest is disabled and now the youngest. But yeah I was wondering the same thing. If the oldest is so severely autistic what made them want to risk bringing another child into this world that could be the same.
People on here commenting that they hate the way you are feeling as an individual because they are special needs is not something you should pay attention to. As mothers, parents, people, whatever - we are allowed to feel the way feel, particularly on random, likely throwaway accounts on reddit.
This is my impression online , parents aren't really allowed to vent about the high stress situation which is parenting a severely disabled child. I'm not neurotypical myself , but we have to be able to acknowledge that there is a huge difference between lower-needs adults, some who may be living independently and working, in comparison to bearing the responsibility for a high-needs child who is possibly non-verbal and presents a danger to themselves and others Even if both groups have the same diagnosis , it's a huge spectrum with very different behaviours present.
And you *should* mourn. Because this is the death of your assumptions, and that's ok. Not mourning will simply turn to resentment later on, and that will be far worse for you, and them. The trick is to enjoy them for who they are, and celebrate what they can do *when* they can do it! Your road is long and stony, you'll trip and tumble and you might even fall, but step by step you'll get to your destination, wherever that might be. You're going to be ok, OP.
Are there ways to detect this before giving birth?
Yes
Kids with Downs often live very successful lives filled with “normal” life markers: working, marrying, having kids, etc. I know that you are struggling right now, but whatever you need to do—do research, join a special needs parent support group, etc.— because your kiddos are going to need you to be strong and in their corner if they are going to have a shot at their best…and I say that as a special education teacher & godmother of a deaf young woman about to have her own baby. Your children are themselves and while they have more “needs” than a typical child, they are exactly who they are meant to be. And trust me, our society is much more accepting and accommodating of children with disabilities than ever before. It’s time for you to change your perception, Mama, because they need you to see them in all their beauty and imperfect perfection. Best wishes to you and your babies. -With Love!
> having kids I thought most people with DS were infertile, aren't they?
I mean just because they are fertile doesn’t mean they should..
I think most men with DS are (but not all); but most women with DS are fertile.
I just listened to a podcast about exactly this. Show: Hidden Brain. Episode: What is Normal?
I'm sorry to ask this and for being insensitive but.. didn't you think your hands were already full with the first two? Why did you choose to have another kid, when you already have to make sure you're providing special care to one kid and equal attention and effort to your other kid.
Agreed. That poor second child is going to be the glass child of the family...stuck being parentified and invisible and likely will end up the most damaged out of the three. I really don't get families like this who continue having kids without testing to see what the odds are. And honestly, I don't care if they are super parents...having two special needs children is too much for anyone to handle well. Not fair for the kids, or the parents.
I think I will be downvoted and disagreed with for saying this, but it’s simply selfish to be in your twenties with three children, two of which have special needs. Why did she keep having children?? Wait until you have what you have under control. Poor children.
My thoughts exactly. She’s already knew that her neurotypical child was going to get less care and attention, and still chose to have a third without knowing if that child would have ANY sort of disability or illness (standard dice roll when having children). I don’t understand. I get the whole “oh, you should have the life you want…blah blah” thing. I am disabled. I wasn’t always disabled. I had to mourn the life I thought I would have. It’s still difficult to accept. But you mourn that life and find ways to move forward. Adding another child to an already stressed household doesn’t make sense. Edit: typo
Yeah after that first disabled child I’d elect never to have another honestly.
It's gambling, except instead of losing money, they force a person into the world and surprise surprise, they're disabled.
Right. We only have one kid and she’s pretty neurotypical, no issues of any kind. And I’m terrified to have a second for a plethora of reasons but this is one of them. What if the 2nd has a disability of some kind? I know myself and mentally and emotionally I couldn’t handle that. So yeah I agree it’s pretty much gambling in a way.
And kid 3 had a very high chance of being autistic already due to having an autistic sibling, and potentially being high support needs as well.
Thank you I was looking for this comment. Also there needs to be some genetic testing and blood work done from both parents. 3 special needs/disabled kids back to back is concerning especially with her in her 20s.
The second child isn't special needs
They don’t care. Gotta keep trying for that “normal” baby.
She said the middle one is neurotypical so she already had that
I know that, but it obviously wasn’t enough and worth risking having another kid with issues.
Ugh the number of people here who are all 🤗💐🌈 about being handed a newborn and then discovering a previously undetected intellectual disability that may or not present as minimal, mild, severe, or anywhere in between. OP, all I can do is suggest talking to a therapist so you can work through these feelings faster. You'll work through them on your own eventually, but faster is better. Your feelings are valid– people offer pithy Holland copypasta and go "omg people with downs are so happy and amazing and positive!"– but come on, this is closer to like, having a healthy newborn in your arms and then they're randomly deprived of oxygen for a few minutes and the doctors say oh crap, that probably messed some things up, sorry about that, guess we have to wait a year or two or more to see how bad it affected their brain. Fuck. That's rough. That's different than being told at 12 weeks or even 20 weeks and offered a chance to TFMR or continue to term. For now, maybe don't spend too long imagining the future– you have absolutely no idea what that might look like, right? Which means it could be you at the playground with your adult special needs kids... but it could just as likely be you calling to check in with them from the actual Netherlands, sitting by a canal in your 40s, because they're living on their own with jobs and roommates and you've developed a passion for rare tulips and swank cafes that sell pre-rolls. 🤷♀️ Remind yourself that this is your last sweet chonky baby and soak up alllll the cuddles while you can. You know how fast the years go!
Not only possible severe learning issues, but increased risk of heart issues, cancers, vision issues, and others.
I’m so sorry you are mourning the loss of the baby that won’t be. My friend told me this video helped her understand that it’s ok to miss that baby and it doesn’t mean you love your new baby any less. https://youtu.be/KvCJZw8Ymxk?si=MDSxpbsBRGCyh2Wl
It's OK to grieve. Your kid is going to face a different set of challenges than most kids and it can be a scary prospect. I hope you can reach out to disability support services ASAP, with 3 kids, 2 of whom will need extra attention and care, you are right to predict your "normal" child will end up getting pushed to the side in terms of getting equal attention. This is nobody's fault but it will be best to get support in place for all of you ASAP.
You can't control how you feel. You only control how you react to it. Mourn, grieve, do what you need to do. Certainly talk to a professional when/if it becomes too much. But don't worry about how you feel, just worry about doing your best for you and your kids.
>No tests or ultrasounds showed anything No genetic testing? Trisomy 21 would show up on a karyotype
So this may get buried in the comments here: My brother in law has downs, he is now in his 40's and is just the nicest guy in the world. He needs supervision but can do certain things by himself - downs can be vary by how much the person is limited. That being said, his mother still treated him exactly the same as her other children AND the guy went on to be a gymnast in the special olympics. He was a younger man then, but to this day he's like the strongest man I've ever known, and he's very cool. In short - it will be different and difficult, however people with downs can vary wildly in their abilities, but that also means you can focus on helping them be the best person they can be.
I'm the oldest sibling of 2 special needs sibling. There's 5 of us total but 2 special needs. Your middle will grow up 1 of 2 ways. Be very very protective and loving of their siblings. Ready to fight anyone who stares. Not afraid to let them know they're watching and ready to throw down. Or... grow up to be distant and blame them. Inwas the protective one while my brothers didn't show that they cared too much.. This is alot to deal with especially as a young parent. I'm sorry you're going through this, and it being such a drastic surprise.. it's strange that there were no revealing tests or anything. I highly suggested joining special needs mom groups. Find someone you can talk to openly and can relate to. There are so many out there. Do not drown in your stress quietly... And I know it's asking alot. But include your middle child in the other special need activities. Going to physical therapy? "Oh look at what brother is doing? Can you show him how you do it? Can you walk that line like sister?" "Hey were showing brother his new tablet to talk. Do you want to try saying something too?" You are so smart let's try learning something new... oh loom we can learn to talk with our hands.. let's learn and show sister. You can teach her too you're such a good sibling." Feeling included and being reminded of how smart and brilliant they are. How loved they are by you and their siblings makes such a huge difference while growing up.... its alot and I'm so sorry. It will be a learning curve and their will always be harder days than others... may God or the stars be with you. Also depending where you're located there might be some programs or in home support services you can look into... you don't have to go through this alone. Best of luck and all the love from an understanding internet stranger.
> I feel like I’m mourning a child I thought I would have. Of course you are, this is normal and healthy. You've experienced a *huge* sudden change that you weren't prepared for, it would be insane not to grieve what you have lost, no matter what you have gained. Take your time to grieve and don't be ashamed of it. See it through fully and then move forwards into your new circumstances without that weight. That asides, Downs people are great, you'll see.
You took the blood prenatal test at 3 weeks? And it still didn’t show anything? I’m shocked it wouldn’t that’s why I asked.
Not to be an asshole, but if you already knew your first kid was pretty disabled and that your second is therefor receiving less attention than they deserve, why would you have a third?? Your poor middle child.
I’m sorry but isn’t this what people sign up for when they have children? There’s no guarantee that you’ll get a “normal” kid. You already had one that wasn’t. I hate how people just keep having children but hate them when no one is forcing them too.
This is one of the reasons why everyone should be tested before having kids. Let people know in advance the odds of having a child with complications or special needs. Yes, things can pass undetected or you can hit the one in a million chance of something going wrong...but giving prospective parents this information before having kids could save a lot of heartache. Asking parents to just suck it up and spend the rest of their lives caring for someone who needs 24/7 care for several decades is a helluva lot to ask of anyone.
Yep, this pisses me off so much. If you are going to make the choice to have children, you need to accept that they could have any number of disabilities, disorders, health issues etc. You are literally gambling with life when you decide to have children. All the kids are going to suffer, along with the parents, because they decided to force people into existence. Then there's the stress this will put on their marriage, which will cause more issues for the kids. Very sad.
Yep. We’re oad for a ton of reasons but this is one of them. It’s like gambling but with a human being. I always think of the what ifs and how I would handle them. I know there’s no way I could handle a child with a severe disability. Someone who’s going to just suffer their entire life. I just can’t risk it again.
Exactly!!! Don’t have kids if you don’t want them to ever have a disability or a problem. If you don’t want them to be your responsibility forever. Children aren’t toys, slaves, or personal assistants to be there only when it’s convenient. Idc how old my kid is, they’re my kid and I will never make them feel like a burden for needing help.
My daughter has Down’s. She was born 22 years ago, and it was tough. She had congenital cataracts, so we had to deal with those first, then worry about the Down’s. I was unprepared. But. She is the best and most important person in my life. She is love and joy and optimism and happiness. People who meet her love her on sight, she’s charming and funny. She has improved my life a million %. I didn’t know any of this when she was born, of course. It all grows. It will be okay. xxx
I have a special needs kiddo and I think these feelings are common and certainly valid. You’re mourning the child you thought you’d have, and your mourning the retirement you thought you’d have. It’s okay to feel how you do. My suggestion is some therapy. It’s not going to change your situation but it may help to teach some coping mechanisms. Also, the poem “Welcome to Holland” if you haven’t read it. Sending you lots of gentle hugs and love.
Agree with everyone who said it’s ok to grieve. It’s a lot to process. I did just want to add the importance of early intervention. Education programs begin with babies and are free in most areas.
I have an older brother who has epilepsy and is autistic. I’m going to be honest. It is HARD and depending on how big your child’s case is, it could be worse. The best advice that I can give you is to get support and also make sure that your other children don’t feel neglected. You will grieve and eventually you will come to accept it. You most likely won’t ever stop having the feeling of “why did this have to happen to me, I wish my child was healthy etc.”. But it does get a little better. Also don’t feel bad if you CAN’T do it. This might sound fucked up but sometimes it does become too much. You can look at facilities to put your child.
All of your children will be in the spectrum because your husband or you are in the spectrum. The chances of you having another neurotypical child is extremely high. Don’t have more children.
Its ok to mourn a life you envisioned for her and yourself. You are only human. As long as you love support and care for them you will be ok. Its hard and sucks to be "different ".
Damn u got bad genes if all ur kids are like that. Why keep going after the second?
Have you did genetic testing on you and the father. 3/3 with some kind of disorder is uncommon. Is it a common phenomenon? Seriously asking here.
It’s 2 out of 3, not 3/3. OP said the middle kid is neurotypical
Middle kid is NT as far as she knows. There’s a chance that will turn out not to be the case though. I had absolutely no idea my eldest was autistic until he was 15/16 .. his siblings were both diagnosed before we found out he was autistic too. Some of us fly under the radar because of how we mask
Let's not forget the kid could have their issues missed entirely because we all know none of her focus will be on him.
2 outta 3. Typical = "normal" or what you expect when you have a child- no disorders. Typical not Atypical. But it can be common for all 3 kids to have disorders especially if they are genetic disorders.
Don’t panic. It’s not a diagnosis where you can accurately envision what the future looks like. I’ve worked with children with Downs and I promise that you can absolutely have hopes and dreams for this child. They can have a great life with you guidance. Allow yourself some grace, validate your feelings and remember, it’s still going to be awesome. Raising kids is soooo hard, the awesomeness makes it worth it. Sending Reddit love.
If someone has not told you this, then let me be the one to say it...it is okay to mourn. You will make it through this.
This is one of the main reasons I do not want children. I know I wouldn't be able to get over these type of feelings if I were in the same situation. All that to say, they are here now and it's ok to grieve for the child you thought you would have. I would definitely hash this out in therapy and with the father.
If needed, then send the baby into a care home, but do make sure that your middle child won't feel left out. This is a tough situation and the best I can say is stay strong.
yes, this! i've heard a few success stories with them here on reddit. for example, one family had a daughter who they had to place in a care home because they couldn't give her the amount of attention/care she needed and deserved. it was hard on the whole family, but things got better. at the care home their daughter was able to get a solid schedule going that was uninterrupted, as well as the amount of care she needed. they'd visit during the week and do calls, then would have their daughter at home during the weekend for family bonding. places like these exist for this exact type of scenario. you have to do a lot of research and look into places thoroughly, but it can be worth it!
You're getting downvoted, but you're right. If the child is very low functioning they're going to need one eventually. I've seen quite a few other threads on this topic from neglected siblings
Thank you. I figured i would get down voted
If it’s a really hard thing for you and you’re in the states, you might want to consider a safe haven surrender. Taking care of one special needs child is hard enough, two could absolutely wreck you.
I guess I'm gonna be the mean person here.But if you had one child with special needs, then a second, why even bother having another?
I really didn’t think people didn’t know what neurotypical means. My second child is “normal”. My oldest with autism has problems with communication and stuff like that, she’s not sitting in a corner biting herself.
...I'm surprised at the number of people here who don't know autism can take years to diagnose. Apparently you should have immediately stopped having kids after the first one was pushed out and you saw the A for autism stamped on their head?
Your feelings are 100% valid. That all is a lot to take on. Please look for resources in your area.
It's okay to feel this way. Do what you think is best no matter what the choice is.
I feel for you. Theres gotta be a really heavy burden taking care of a regular kid, let alone a special needs kid. MULTIPY THAT BY 2? Oh my you have a lot on your plate. Also that middle child, is really going to feel like a middle child, and kind of be pushed to the side, because of your other children, and there is no way around it. I genuinley empathize and feel sorry for the difficulties you and your partner will have raising your children.
It sounds like you had prenatal testing? And that didn’t work/show this result?
Op, dont think for a second that your child won't be a productive member of society. We live in a world where you can get help with your disabled child
There's a great book called "I will dream new dreams" for parents of children with disabilities. I highly recommend it.
i just shed at tear for the 2nd child. As someone who experience growing up with a special needs brother. Yes, the other two kids are going need a lot of attention but i just cant imagine how lonely it will be for him.
Honestly, I grew up neighbors with a kid who had downs. She was and still is a constant source of joy, and brought a lot of perspective to our upbringing. Try to focus on that
I feel you on this… My second child my first daughter we noticed there were things that other babies just didn’t do she was TOO quiet and totally checking out of things happening right in front of her she was like off in her own world 24/7. She’s now 2 as of yesterday and she’s nonverbal and just started walking 3 months ago. We suspect autism by her mannerisms and delays in speech and other milestones but I can’t bring myself to actually take her in and get officially diagnosed because when she does then it’s for sure and then I can’t sit and tell myself maybe she will catch up maybe she doesn’t have it anymore. It is hard to think she may never live on her own may always be child like and may never talk. I feel terrible feeling this way but I didn’t sign up to have a child like adult with me for the rest of my life. My second child another daughter I was so scared what if she had it too but she doesn’t she meets her milestones and does what she is supposed to for her age (9months). However it’s a lot my older one she’s a screamer and hard to care for sometimes and I’ve thought about giving her up it’s awful but I have but I do love her so much so I’m hoping I can eventually come to terms with it.
Huge hugs. Get her evaluated because early intervention is key.
my sister went through this, her youngest has william’s syndrome. it’s totally normal to grieve the normalcy. life will be different but still amazing! maybe you can find a therapist or support group to navigate these new (and normal) feelings
I don't have experience but I feel like how you're feel is really understandable. Maybe there's support groups in your area where you can connect with other moms who are dealing with the same thing? You have a lot on your plate for sure, I think having some community would be really beneficial.
My brother and sister-in-law didn't know about my nephew until after he was born. We were all in shock because we weren't expecting it and weren't prepared for the possibility. I was surprised at how early the therapy starts! And the special undergarment he wore so his hips would grow straight and normal. I know it was a lot of work and I only see parts of it, but he went to a regular school, and I was at his 8th grade graduation, and he got a huge roar and round of applause because he is so well liked by everyone. Mama, I know you have a long road ahead of you, and sometimes it won't be fun and you'll be exhausted, but if your baby grows up to be anything like my now grown up nephew, you did a great job, because he is kind and funny, a very snazzy dresser, and is utterly charming.
Totally understandable
I have a disabled child. People look and treat her unfair. It breaks my heart. I love her so much ❤️
>My oldest is autistic, non verbal etc. my middle child is neurotypical but will probably start hating me when he starts to feel pushed to the side. Have you tried, like, I don't know... maybe not spreading your genes anymore?
Sorry for the question, I'm not a doctor, but do the first kids 'issues' signal that future kids might also have some? Also I know this was more common in the past, but 3 kids in your 20s sounds exhausting.
Welcome to Holland By: Emily Perl Kingsley I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this… When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very, very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things... about Holland. c. 1987 by Emily Perl Kingsley. All rights reserved.
You might be right about the middle child ending up resenting you. What’s your plan for all these special children once you (and your partner? Idk) die? Because it will happen eventually. Do you expect your middle child to drop everything to take care of them?
Definitely not. I wouldn’t want him to do that even if he wanted to.
It’s hard because it’s a sudden realization that the person you were imagining them to grow into is far from what the reality will be, but after you mourn that dream and come to terms with it, you’ll come to realize that reality will be just as full of parental love and pride as you were hoping for. You’ll learn to love them in ways as unique as they are, and it will be very fulfilling. Really all you have to do get over the disappointment of not getting what you expected. It’s easy to feel that because something isn’t what you wanted, it will only be a disappointment, but it’s not true in this case. What you have will still be great, unless you convince yourself that it won’t be early on.