Parenting Autism: Resources, Struggles, and Service Gaps

 This was not my plan for today.  I didn't have a plan to sit down and write about how frustrated I am at the lack of services available for kids with Autism.  Sitting down to write this probably, it occurs to me that this may not be helpful to you in terms of finding resources, but maybe it will.  As always I will share everything that I have found in case it does help you.  I linked what I have found below.

Little boy at Disneyland

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What sort of Autism services am I looking for?

That is a really good question.  I don't think that I realized until this spring how much the pandemic has hurt Ry in terms of his social development.  Oh boy it has been a doozy.  All of those soft skills like making friends, hosting a friend at our home, turn taking in conversations with someone who isn't family, how to play with kids on the playground (and deal with frustration appropriately) didn't happen for far too long.  That time was critical so I am playing catch up.

After school sports/activities for kids with special needs (with neurotypical peers).

It doesn't seem like much to ask, but it isn't easy.  Sports (except on the special needs teams) have been an utter disaster.  You may wonder why, so I will break it down the way he explained it to me.  We tried soccer this season (after the special league last year), and he says that his brain just can't focus on it.  He uses his coping skills to calm down when he is feeling upset (or scared), but that causes him to lose where the ball is.  Then, inevitably the ball is upon him and it is startling.  It requires a tremendous amount of constant focus to see where the ball is, and where it is heading.  As much as our team (and coach) tried to support him, it just didn't work.  

Even if his sports aren't with his peers, maybe a league for kids like him?  He isn't cognitively delayed.  He functions well (even above average) academically.  When he is on the special needs teams, while the stress level is gone, there are lots of different types of disabilities.  Kids in wheelchairs, etc.  He is super athletic so generally runs circles around everyone.  At one point, they just had him play with adults!

Summer camps for kids with high functioning autism.

Little boy golfing

They used to call it Asperger's, but that is a defunct term now (for those of you that might not know).  I don't feel like I can put him in a regular summer camp.  Beach camp last year went great, but it is playing every day, and his peers are not doing those kinds of camps anymore.  They are doing big kid things, that he can't do without support.  And it has to be real support.  Someone that can see if he is isolated, or frustrated, before he acts out.  He might not, but we always have to be prepared.  So in this case we have him signed up for one camp this summer.  It is through the Friendship Foundation and is for kids with disabilities.  I hope that they are going to have kids like him, or peers his age that he can interact with.  

You can read more about our journey with Autism Parenting by clicking this link.

My fear is that it will be like the disability league again where there aren't any kids that can function in a regular classroom setting, and he will be the odd man out.  Again.  But what else do I do?  I found another camp that was recommended by a mom on FB, but they suggested that I should hire my own aide.  Ok but how?  Where?  And what if he doesn't like that camp (which could totally happen).  Then I am out the cost of the camp plus this aide that surely will cost several hundred dollars.  My mind is boggled.

Social Groups for kids on the autism spectrum.

So seriously you guys this is so helpful.  It is a bunch of kids, JUST LIKE RY, and they hang out and play.  With a therapist to facilitate the play.  Those things that neurotypical kids just learn in play, he has to be specifically trained.  Like dude, you cannot just talk about your Nintendo Switch all day.  You have to ask the other person a question about themselves.  That's just manners, but is super hard for him.  It takes practice.  It is so hard to see him, and hear him say I'm just weird, when there are SO many kids like him.  That isolation isn't good for his mental health.

I *may have found one for the summer, but it isn't for kids with autism.  I have been trying to call and email a local therapy place that has them, but literally can't get a call back.

Specialized therapy for autistic kids.

Imagine being a smart kid, who is VERY social, but has no real friends.  He really doesn't, and I understand why.  When he gets frustrated he might cry, he might yell, he might throw the ball they are playing with, or he might run off.  If he really likes you, he may want to hold your hand.  Those things just don't feel right to a bunch of fourth graders at your new school.  At our old school, there were a bunch of kids that just knew him.  And that stuff was ok with them.  We were able to find a therapist here that specializes in working with kids on the spectrum and its been fantastic.  

He loves going there, and you know what they do?  They play games. She mirrors his actions so that he can see what they look like to others.  They practice turn taking, and ways to manage strong emotions.  I'm very thankful that we found Ms. Crista here.  She has been fabulous, and a really bright spot in a really dark time.  Even if you don't need it now, it would be best to find one in your area.  Find out if you can start sessions early.  Even for you to help with parenting.  I wish we had done it sooner...

Resources I have found for parents with children on the autism spectrum.

Little boy playing

And this is not a good list.  If you have resources to share, PLEASE do.  All of us can use them.

GRASP-while it is mostly for teens and adults on the spectrum, they do offer local services for sports, camps, and groups.  

Your local Autism society chapter.  They are a fantastic resource for help in finding an advocate if you need one for IEP, therapists, etc.

Facebook.  God I hate Facebook sometimes, BUT your local autism parenting page will be a wealth of information for you.  Everything from which doctors/dentists are autism friendly, to which local camps are inclusive of neurodivergence.  It is first stop resource for me.

Good luck parenting you guys.  Even with typically developing kids its a minefield.  LOL.  Reach out if you have great info for me or to share!  Even though no one really comments on blogs, I love to hear from you.  You can follow my on FB or Instagram.

Little boy staring at the ocean

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