Autism. Kids
I have a son on spectrum. He is 8 now, and currently I doubt if he’s ever gonna be able to work, or live independently. Parents of special kids, what do you think of your children future? I’m also looking into all new devices that suppose to help, and feel like most of them created by people who didn’t know what they were doing.
I have the same thoughts about my 4yo son’s future all the time. I was diagnosed on the spectrum myself but that’s of no consolation when facing the reality that he will likely not be able to live independently. Even among the autism “community” I feel conflicted and lonely. On one hand, more awareness is good. On the other hand, most of the kids on the spectrum are quite functional. All these “autism moms” who are fucking “proud” of the autism in their lives have no fucking clue the kind of despair some families face. I don’t know man, I only pray none of our family ever has to live without any of the others. Maybe all of us will be lucky and go out in a quick crash together.
This. When my wife is traveling I’m afraid to die in my sleep, so my kid would have to spend days with my cold body being unable to call for help. I think all those autism moms just use this “proud to be” to avoid dark thoughts of how their motherhood experience is so much not what they expected. I also in doubt about getting kids into autism community together, because the biggest deficit for an autist is to make human connection. So when I observe play dates of bunch of autistic kids they all feel miserable. And what I fucking hate is when someone says “oh, your child is an autist, he must be so gifted in math!”, first of all my kiddo has a real good memory and he knows many words from three different languages now, and he hates math, but second he can’t even make this thing into real skill. It’s impossible.
Yes my son is non-verbal and it destroys me to imagine what would happen if my wife and I aren’t around. Pretty much no one would be able to understand anything he needs. I don’t tell people I’m diagnosed with ASD and ADD. Because I don’t want to glorify this crap. Because I see in my kid and his severely impacted peers what kind of struggle it is. I hate people’s expectations; e.g. he’s autistic so he can be Bill Gates or Magnus Carlsen!
I know someone who is associated with Autism Speaks non-profit. Happy to connect you if that helps 😊
Thanks. But many autists I know hate Autism Speaks, they do a lot of work on awareness, and that’s great, but they are pretty much useless in everything else.
(Mother of a child with autism) I hate Autism Speaks, they suck. I would never ask them for any advice
My heart goes out to you guys. Hope you find the right support group. Hope you find peace and happiness in your lives. Have you heard about Inclusive World in the Bay Area? I can connect with a few parents with much older Autistic kids. Maybe they can share their experiences.
I’m definitely interested, my son just turned 4 and we have been living in the Bay Area for a year so appreciate your support
Thank you! I live in Massachusetts and we have support groups and stuff. I think the problem is we never have time for support groups :) I’m sure your recommendation of Inclusive world will be useful to parents from Bay Area. Though my heart is breaking for all Bay Area parents when I think about your traffic.
My son is 4 and has high functioning autism. I absolutely can relate to everything said here, it’s reassuring that I’m not alone in the ‘dark’ moments which happen on a daily basis. We are getting every therapy possible and thankfully we’ve seen amazing growth. We did opt for a 2nd child and again thankfully he seems to be neurotypical, but we’ll keep our fingers crossed. It’s a very lonely place as a parent and I am slowly shifting my goals and aspirations as a parent who wants to see my kids succeed. My goals are different now and I’m coming to terms with that. Things could be worse, there are worse ailments out there, other parents have it way way harder, so we just try and remind ourselves we are fortunate and grateful. But it’s always going to be hard. Cherish the hell out of those little wins and steps forward.
Yes totally agree that things could be worse, two of my friends have children with cancer, and they see us as a normal family with no problems. I’m thankful that my son is healthy and most important he’s a super happy boy - in his own world :) I see you work in Amazon, how has your son diagnosis changed your career? I’m curious as I’ll be looking for a job in the next few months once I get my work permit and not sure what type of jobs I should aim for. My husband works in a super demanding job in the Bay Area with some flexibility
It has impacted my career, no doubt. I ensure my hiring manager is well aware of my scenario and I’m needed at home. I’m super involved and make family my priority, so sometimes I can’t get work done when I want or how I want. I’m sure it will impact my overall trajectory, but it’s also changed my priorities (in a good way, I think). We as a family are an unbreakable unit and constantly support each other, a lot of that is due to my sons autism. So in a way, it brings us all closer.
Hang in there! It's so hard to find balance / sanity. I wish I had encouraging words but it's so challenging. Even with resources free and paid it takes years to figure out what works for your child. Are you able to get an iep plan at your school?
Oh, we’re in one of the best public school in the country, I believe. He has a lot of services on top of iep, assistive device (its and iPad for writing and sometimes talking, he was non-verbal till the age of 3 and used it to talk), adaptive sports.
For me it’s more about adjusting my expectations on what future I foresee for him
I was non verbal until age 5. Held back in kindergarten, did poorly in school up to grade 10. I'm high functioning but a very slow reader and writer so school work was hard. At that point I gave up and just looked for easiest path forward. Quit trying to do reading assignments, just skimmed for answers or I guessed based on what I could remember from class. School started having us write papers on computers, that helped a lot with being able to do English assignments. Started getting straight As after years of not being able to get work done and barely passing each grade. Ended up going to college and graduating with a 4.0 GPA doing the same. After graduating I found good paying remote job as a software engineer. Hope this helps some of you parents worry a bit less about your non verbal children. Things can change, they did for me at least.
My kid started talking at the age of 5 as well. He learns almost everything from his assistive iPad. May I ask you? Do you have many friends? That’s the part I worry a lot. He doesn’t seem interested in his peers at all. There was a girl who had a crush on him in the first grade, she learnt a lot about autism and tried hard to connect to him, but he had zero interest.
I've had a few friends in school. I was usually able to make some friends. Other students didn't really know I had autism unless I told them. I played a lot of video games in middle school(99% of my free time) in highschool I quit playing video games because I lost interest in them. Usually just hung out with friends online or at school. I had friends on a gaming forum and would chat with people from it on AIM group chats. After family lost everything in recession, we moved before I started 11th grade. Didn't make any new friends at the new school, it was much smaller and I had less in common with the kids that grew up in that much more rural area. That was a bit depressing, people just thought of me as the quiet smart kid but I did keep in touch with friends from my old school online. Did community college for 2 years, took a public speaking, participated in a play, and joined Honor society, those helped with improving social skills a little bit. Started making new friends when I transfered to university and took computer science classes. Participated in the computer club too. Currently don't live by any of my friends, but I travel with friends from middle school each year(usually go camping). Sometimes visit friends from college that are still in the same state as me.
My sis was labeled low functioning, didn't walk till almost 4, didn't speak till later. My mother was advised to take her out of school and put her in a home for severely disabled kids. She didn't. She gave her a dog and encouraged anything that interested her. We would regularly stop the car to poke roadkill because my sister seemed to like it. My mom would gag but hand her a stick. Today my sister is happily married, working in a scientific feild, all those years poking roadkill payed off. She is not cured by any means, but she is happy and loved. Don't give up.
You have a wonderful mom
We have twins and one of them is on the spectrum. Thankfully the child received early intervention services through a public CA program and we're transitioning over to school district. Couple of questions - How has others experience been in CA (Bay area)? Also, for those whose kids got diagnosed later like at 5 yrs and older, when did you start having doubts?
Apart from public preschools being free, are there any other advantages over private preschools? We're told the classroom is going to have 8-10 kids and 3 teachers, which is definitely better than private.
I should have clarified. We are deciding between a regular private preschool with therapist overlap or special education Preschool in the morning and BT in the afternoon. But I get your point. It is hard for us to make a decision. I guess we can never predict how it will turn out.
We keep believing in them and doing everything we can. It’s so tiring physically and emotionally. It also depends on the severity of the condition and if they speak. I use all resources possible around me (free/paid) education, therapies, etc. Childcare is so important so you get a relief and the regional centers are helpful. However I do agree with you that the services and devices aren’t great, everything is so behind. It’s a constant struggle and specially if you are a career oriented parent
I feel you, it’s exhausting. I also keep believing, but trying to be realistic. I recently found out about boarding school and a community for adults on the Cape Cod and feel like I should setup a saving account to fund it. And were thinking about another child, but scared shitless to have 2 kids on spectrum... I feel like I’m missing out on normal parenting experience, I’m constantly anxious and worried, and there is nothing I can do... And with current cost of additional treatments I’m worried that I can’t afford to lose my job for long...
Oh, and guess what. I met this parent who just moved from Seattle, she said her kid was number 1218 on the waiting list of Autism center. What the actual fuck? I guess I’ll never leave Massachusetts.