And the devastation continues

[u/jbxeu]

If you saw my last post last week you’ll know my 19 month son got his autism diagnosis well today his twin sister got hers as well.

Although I kinda expected it I was holding out hope as she didn’t have many signs.

I feel like I genetically failed them. Like I passed on my worst genetic trait and doomed them. How do you live with the unknown for the future ?

What I know now is not comforting as these are my only two kids so no other sibling to look out for them once my husband and I are gone and that’s a scary thought.

Sincerely, Devastated mama

[u/IHaveOldKnees]

Everyone lives with the unknown future. :-)

You've got the diagnosis. It doesn't change your wonderful, beautiful, individual children. It doesn't change that you are the best parent for them.

What it does do, is gives you the opportunity to get help, support and give them the best environments.

We all live with the unknown. no future is written, all you can do is try your hardest to make sure your kids have the best chance to succeed.

[u/Ammonia13 → u/IHaveOldKnees]

Very well said

[u/Spooky__Action → u/IHaveOldKnees]

This was very very well said. I will just add. I do know more about our son‘s future and exactly how we “genetically failed” him. Our son has a genetic disorder called fragile X, which causes autism as well as a moderate to severe intellectual disability and other physical ailments and complications.

Even though there are still definitely unknowns in our future, knowing more doesn’t necessarily make things any easier. All it really does is let us adjust our expectations and deal with the fact that our son will likely never be able to live independent. Other than that, we’re doing the same thing as everyone else here. All we can do is early intervention and to try to help give our child the best life that they could possibly have.

I’m sorry for what the OP as well as all of us are going through. And I wish the best to everyone and their families. I will just end by saying that our son is a blessing and has brought us both so much joy and happiness. He’s nonverbal , 2 1/2 years old, but every single person who encounters him leaves that encounter happier or feeling better than when they went in. That is a gift. There are so many little tender mercies that we get to experience daily as his parents. My advice would be to look for and constantly cling to those. Because if not, this is going to be too hard.

[u/Ammonia13 → u/[deleted]]

Exactly!!! I was told when my kid was one and a half that they were autistic and I did not believe it and I didn’t end up trying to get him diagnosed until during the pandemic and it took four years because of the waiting lists. he was a month away from 12 years old and I finally got his diagnosis prior to that. I believed he only had selective mutism developmental delay and didn’t see the autism until I learned about it, and could differentiate between that and the other issues going on. Thankfully, my child still got OT and PT and ST and has had an IEP his whole life.

[u/Miss_v_007]

Hello well listen I know it’s hard to get this diagnosis, but it’s sort of like standing at the edge of a pool and now you just have to dive in. You were probably on the edge for a while with feelings that both children may be on the spectrum and now you have the label. The only thing it changes is it shatters your denial, mechanisms, and allows you to get into action. Both of them are so young and intervention does wonders. So many children are Neurodiverse now that it’s really becoming the norm. The bad news is out of the way and now you can better both of their lives and your own. ASAP get speech and OT, lots of play dates and social exposure, go on YouTube and learn about how to do speech therapy at home, follow speech and OT accounts on IG. If they are very low functioning, consider ABA therapy, preferably with a BCBA therapist. It’s not the time to cry or blame yourself. It’s time to get into action. I have friends that started this when their children were young and now their children are five years old and doing amazing. You would never know any of them are on the spectrum. Me on the other hand, I didn’t do much because I wasn’t sure/and denial and now my child is five and we have a lot of catching up an intervention to do. Something that helped me honestly was reading the main book from autism speaks. You can buy it on their website. I stayed up all night and read the whole thing start to finish. They are controversial, but they address exactly what you’re talking about when you say, I worry about their future. “Will they ever get married will they ever have kids ?” Well, guess what that’s an illusion for any parent do you think just because your child is typical that guarantees they will get married absolutely not half the population is single right now. Keep your head up think of your beautiful babies get into action and if your mental health continues to decline, go to your psychiatrist and get on medication and in therapy. Also last thing it’s important you do something for you every day - a walk journaling meditation out for lunch etc etc Hope this helps !

[u/Big-Bike530]

The only hope I can give is the level isn't so clear at this age. You'll have a clearer picture at 4-8. My 7 year old its pretty clear she'll never live independently. The one that just turned 4 was almost completely non verbal at 2. He talks up a storm now when he's not anxious. That anxiety is the most crippling thing for him now. We already see him looking out for his older sister too. He was originally diagnosed level 2 and I can see him dropping to 1 on a reassessment. 

[u/[deleted]]

I know its terrifying, I worry about this too. We have only one and only plan on having one so this is a huge concern for me. I guess for me the only way to feel some bit of control over this is get financial ducks in order and start putting away money for the future or take out a policy that will help financially. We don't know our little ones level yet so it's hard to visualise what the future will look like. Also what buoys me up is reading stories of success from early intervention on this sub so that's what we are doing, get as much early intervention and just plan financially for the future. Control the controllables I guess and try not to worry too much about the things that are yet unknown. Have you seen the documentary The Horse Boy? Its free on YouTube. It gives me great hope. That little boy is now living independently and driving a car

[u/AdBusy5424]

I’m sorry mama. I know it’s rough and you’ve got every right to feel upset! I do wanna tell you I don’t have twins but my son and daughter are 18 months apart at 2 and 3. We received my son’s diagnosis first and then around a year later received my daughters. I was devastated and felt like a failure as a parent. Most days I still do, since then my daughter started ABA with my son. The RBTs tell me he is so clam now that she is there. I see a huge difference in them. They work with them playing together at ABA as well and since I cannot tell you how inseparable they are. I just try to think of it as my son doesn’t have to go through this journey alone. He has a built in best friend that can understand on such a level the rest of the world may not. She is a lot more social than he is so a lot of times she pulls him along and he goes because he loves his sister. I hope you find peace in this but know you are an amazing mama and I can tell you through therapies it has gotten a little easier. I hope this helps ❤️

[u/Longjumping_Test_760]

Never underestimate what your children will and can achieve. Give them all the love and help they need. Our 9 year old is in mainstream school, sings in the choir, is happy and confident to sing on her own in front of an audience. She is in the top 5% of the country in state assessment exams in maths and English. She has loads of friends and is an integral part of her class. Yes she has some bad days and suffers from anxiety. It has been a difficult journey at times but also really enjoyable and happy. Good times outweigh the bad. Get early intervention, get the help you need. Well done on the early diagnosis. Never underestimate your kids and above all look after yourself. To give the best to your kids you need to take breaks and get down time yourself. Best of luck with it all.

[u/Daisydashdoor]

I am so sorry. At this point you just need to feel all the emotions before you can move on to get the best support for your little ones.

Please don’t fall into doom and gloom. Loads of posters here are autistic themselves or their partner so there isn’t reason to think that having autism means that they can grow up to be independent and find someone. Even if they will give higher needs there will be still loads of love and parenting movements.

Plus a sibling is no guarantee that they will help out in the future. They might totally reject that role and it wouldn’t be fair anyways to ask for too much

[u/InTheMomentInvestor]

You did not genetically fail them. I honestly think something environmental is going on, or something else which I will not mention(I don't want to get banned). All you can do at this point is to deal with what is going on, and hopefully interventions can improve their and your lives a lot.

[u/Wise_Yesterday6675 → u/InTheMomentInvestor]

Agreed. My kiddos are both on the spectrum and haven’t been poked for lack of better words. My husband and I are also autistic. We have been detoxing, but also changing diet and trying to rest it holistically. Granted, it’s not for everyone. It’s just what we are doing. My kids are thriving. I know on s you commented you would be downvoted 🤣

[u/Adventurous_Day1564]

I would have shared with you the photos I did with my son yesterday, caring loving little angel.

Stop saying you are doomed, nothing will change their value. They have a condition, but this is not who they are, we all go thru learning curve, grief... whatever you call. And we are nowhere in a better position, they are not doomed. Read my comments on my journey, we are far away being perfect, but we had lots of progress.

I do not say we are out of woods but there is progress, keep calm and give best support you can give.

You got this.

[u/Chitown_mountain_boy]

Man your kids aren’t even 2 yet. Don’t write them off. There are plenty adult autists that are doing just fine. I am and I know my sone will be too when he’s an adult. Hang in there. You’ve got this.

[u/_nebuchadnezzar-]

I feel I could have written parts of your post myself.

”What I know now is not comforting as these are my only two kids so no other sibling to look out for them once my husband and I are gone and that’s a scary thought.”

I have b/g twins (5) that were born at 35+6. My daughter was an at-birth DS diagnosis, and against all odds, born healthy otherwise. My son was intubated and the NICU staff feared he wouldn't make it. I didn't feel I had anything to grieve with my daughter’s diagnosis— I was incredibly grateful that for all the surprises and gifts I never asked for, at least this child was healthy and a little force of nature. When my son was formally diagnosed, it was the last and final shoe to drop. The story I told myself about my daughter’s future was erased overnight. I didn't feel angry... I felt betrayed.

Its taken a lot to navigate the complexity of these feelings and find a path toward healing. The pressure and burden of unsolicited advice from others (mainly my family) to have no more children weighs on me deeply. Unless you experience circumstances such as these, no one can fully understand how consuming the fear is of leaving your children alone in this world. But I am learning to focus on the things I can control— building a strong support system for the twins (and our family unit), celebrating their unique strengths, and advocating for their needs every step of the way.

[u/Bibbityboo]

Can I just say take some time for yourself and cry or shout into the void or whatever you need to just let out your emotions (therapy is probably a great idea too). It’s ok to have big feelings right now. I know I did. Huge ones. Pushing them down and bottling them up is more harmful and will come out when you least want it to. 

I thought I was prepared going in too. To the point I was worried that it wouldn’t be seen and we wouldn’t get a diagnosis (level 1-2 most likely, we don’t use levels where I live). So I should have been relieved when they saw my son and he was diagnosed. But I cried. I cried a lot. And I struggled to tell people at first because I would cry when saying it. Then they would want to comfort me or freeze or something and really it was just a lot of emotions. And complicated ones. Relief, worry, sadness and frustration. It’s not that my son is any different than before the diagnosis, but it was having it spelled out where he will struggle in life and knowing that… I can’t stop it. I can’t make his life easier. That’s hard to hear as a parent, even when we logically know that everyone has their challenges. Right now you’re feeling all of that and worry for their future, and mourning what you thought your parenting will look like. 

I can tell you though, parenting still has its joys for me. I still laugh at him, I love his charm, his frankness while blunt can be hilarious (unintentionally). We still have magical moments as parents. But some things just look a bit different. 

Don’t let yourself dwell but recognize that you are processing this. And it’s going to be a bit of time to do. 

I don’t think you failed genetically either. FWIW, we are pretty sure now that my husband is autistic (they’re so alike!!) and I can say with 100% honesty that I don’t blame my husband. I don’t think he’s done anything to our son, or failed him. Not at all. It’s just how the roll of the dice went. The only way we fail our children is if we don’t try to love and raise them to be the best they can be, whatever that may look like. 

[u/Dick_in_a_b0x]

I’m sorry to hear about both your children. I grieved my son’s diagnosis for almost 2 years and it killed me inside. The worst part was the vagueness around the cause. No one had an answer it made me angry as hell.

I don’t have anyone in my immediate family who is autistic and did a test to see if it was genetic. It came back that neither one of us carry any genetic markers that would indicate autism. I’ll link the website so you can all participate and hopefully get the answers you’re looking for. Best of luck to you.

https://sparkforautism.org

[u/Lanky_Passion8134]

I understand what you’re going through, as my son was diagnosed around 2 1/2 years old. From my experience, it’s challenging to determine their developmental level until they’re older; for us, it was at age 5 during an independent neuropsychological evaluation. Early intervention was invaluable in those early years, though some periods were tougher than others. Transitioning from early intervention to preschool was daunting, and I felt lost navigating it alone. When COVID hit during his last year of pre-K, the move to kindergarten was overwhelming due to uncertainty and working full time. First grade was particularly difficult, prompting me to seek a special education advocate. I later discovered his teacher was inexperienced and avoided working with special education students, which I wish I’d noticed sooner. After that challenging time, things improved significantly. I learned the importance of choosing my battles and collaborating with educators without feeling constantly defensive.

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