Need help for a 12 year old BIG BOY with autism

Dear Parents, Caregivers,

i know this is a long stretch, but I am really needing help here.  I am a single MOM to a 12 year old boy learning from home.  He has autism.  He is bigger and taller than the average adult.  He's been approved for 24 hour supervision through IHSS, and I have to resume my search with them, I also have to follow up with a healthcare organization through the regional center, but I thought I'd post here.  I am looking for someone who is used to dealing with an adult or an adult size child with disabilities.  He also needs help with selfcare.  He has other medical issues, and the main thing, is that he is non verbal, with behaviors that make it unsafe for him to go to school in person.  He will put any and everything in his mouth.  

I am really at a loss, and overwhelmed, and stressed daily.  More than anything, first and foremost, I want him to live a long and healthy life, but I wish so much for him to also be able to talk, tell me how he's feeling, what hurts, or makes him sad, etc.  Secondly, I wish so much for him to be able to gain independence in self care.  It's hard for me to feel like I could find proper supports that I could trust,  due to him being non verbal, but also due to his physical size.  

What he really needs is a Big strong person who has the patience, and sensitivities to help him.  Maybe you or someone you might know can help.  

Thanks for reading, 



Parent Replies

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I was a single mom for 10 years..and my eldest son had health challenges (seizures, learning challenges, etc) so I understand a bit about what you're going thru..but just a 'bit' because truly you have your hands full!  Your son is very fortunate to have you as his Mom.   ----I have 2 grandchildren, brother & sister, ages 3 and 4. Both of them are on the autistic spectrum (neither speaks, unable to relate to others--except the 3 year old girl is making improvement) The best thing I was able to get their mom to do-- down in Ventura-- was to connect with her local Regional Center. You mention you've connected, but that you have yet to 'follow up" with their recommended "healthcare organization".  Now my grands are going to a special school in their neighborhood. It is wonderful. (Thanks to the Regional Center's network of organizations, individuals, etc)

Hi, there - sending you the best wishes for both you and your son!

I don't have a recommendation for a caregiver, but reading your post did make me want to share something else with you: my sister and her husband have an adult child with Angelman's Syndrome; she is nonverbal and has many similar attributes to what you're describing about your son. Some years back the whole family learned some basic American Sign Language. While my niece doesn't have a huge vocabulary, she has signs for each family member, family friend, caregiver, favorite animals, foods, activities, etc. This makes it possible for her to communicate, and to be understood - a big stress relief for everyone! I thought I'd share in case it's of help to you.

Contact your Regional Center - unsure where you are but I'm sure they can redirect you.  Christine

From RCEB's directory: 

  • Intake Over 3 ReferralsIntake Referral Contact# intakeoverthree [at] 510-618-6122
    San Leandro

Hi S,

Fellow autism mom here and I see you. I wish I knew someone who could be helpful to you and your son. Trusting someone is hard especially when your son can't verbalize his needs or feelings. But the great thing is that he qualified for 24 hour supervision with IHSS. They give you the option to find your own provider, but they also have a list of providers too. If you don't find someone from your post, it would be good to interview a few people off the IHSS list and see how that person would match up to what you want for your son. Try them out, but be around your home to begin. See how they interact with him, their temperament, how they deal with your son with his safety and behaviors. You should be able to get a better sense of how they treat your son.  And in time, hopefully you'll be able to find someone/people great for your family. Wishing you the best.