Help Found!

Yesterday, I posted about having (hopefully) found help for our son, Max, and in turn our entire family.

I am so pleased with the result!

Erica came over at 5:30pm and by 6:45 we had a little plan in place that we could immediately act upon. She educated us on how Max processes things because of autism.

Autism.

We have known since Max was wee that he was ‘special needs’. He has had Physical therapy, Occupational therapy, and Speech therapy since he was one. (he’s 61/2 now).  We knew about the obvious difficulties because we could SEE them. He couldn’t crawl, sit, turnover, walk, jump, skip, ride a bike, swing, open a marker, put the cap back on, keep food in his mouth, blow bubbles, point to his knee, or tell us very much.

Through the help of all the therapists, he can do all of those things and more.

But he can’t dress himself, although progress has been made. He can’t brush his teeth himself, or bounce a ball, or hoola hoop. That’s OK though because we help him and he’s learning skills all the time.

I have been trying for years to get an occupational therapist to come to our home and help him learn those skills. They don’t teach teeth brushing in Kindergarten, you know? And while I certainly taught his twin sister, a typically developing over-achiever with a glint in her eye how to do it – those methods don’t work with him because of his problem with sensory processing.  I am his momma, I know him the best, but I never studied childhood education or anything like that. My own tool box was depleted.

When I said yesterday that we couldn’t get any services for him – I should have been more specific, we couldn’t find any services for him at home. We were told many times of these magical funds that provide things like free childcare where a trained professional would work one on one with him, and it just sounded so great! BUT – that’s when the bureaucracy crept in. There are no services in this town that will take on his case because he doesn’t have medicaid. Pure and Simple. He doesn’t qualify for help based on his disability alone because he is not ‘frail’. Therefore, you turn to medicaid which is for the child but looks at the resources of the parents and apparently we are too rich. And anything that is private has waiting lists. We have been on one list for 8 months – 8 months and we haven’t even been given an appointment time – we were just told that we would get one eventually. Another list, for a private Dr. (who does take insurance, but the co-pays are way high but that’s OK because it’s for Max) has had us on that one for 6 months.

We have seen clinical psychologists, and psychiatrists, and behaviorists, and even had children’s social services show up at my door (long and ridiculous story) and NONE of this was right for Max.

And in the meantime, his behavior at home is awful. He has terrific mood swings – in a minute he can be laughing, angry, and then weepy – without any outside indicator of what set this off. He is abstinent, mean, rude, he spits, jumps up and down, kicks, throws things, rips stuff, and uses every last ounce of patience and then some. We have no idea how to discipline him because who knows if he is really capable of processing a punishment. He has consistently tested as a 3-4 year old level (2-3 years delayed) and we just don’t know. One person says ‘he understands, lock him in his room for 20 minutes every time he has a tantrum’ another says ‘speak softly to him’ and so on.

My point (rambling that is is…) is that there were so many obstacles for him to overcome that we could SEE that autism never really entered the picture. The ‘indicator’ we were told to look for was whether or not he would make eye contact and oh boy, does he ever! He loves meeting new people and is extremely cute and friendly and inviting. But he can’t ‘play’ with them and he has never really had a friend. He gets very anxious over small changes, he sorts and re-sorts huge piles of things into categories that make sense to him.  He doesn’t accept verbal explanations. For example – he will ask for paint (which he wants to paint himself with – no problem, outside, have fun) and if we don’t have any he does not say ‘oh, ok’ he just keeps asking.

Once I started researching autism more and more – I realized that Max’s behavior aligned with so many of the indicators that there had to be more to his story.

And so a new search began. Instead of looking for an occupational therapist – I started researching resources for Autistic kids in the area. And THAT is how I came to find OASIS – a small company owned by two women who wanted to serve autistic kids in whatever setting they need. It is private. No insurance. No medicaid. But guess what – the amount they charge per hour is LESS than our out of pocket co-pay through insurance would be. Amazing system they have here. (Canada has its perks, but it also has limits on broadband..and yes I realize I am comparing healthcare to internet but hey, give me a break over here).

I have to say that having a child with autism always sounded so foreign to me. I remember very specifically, while pregnant, thinking, oh those poor parents – thank goodness I won’t have to deal with that whenever I heard about it on the radio or podcasts or anywhere.  So yes, there is a mind-set adjustment that has taken place.

There is also a huge sense of relief.

I feel like I understand him a little better now.

There is no cure for autism.

But there are specific things we can do communicate better with Max. There are specific things that Max can do to communicate better with us.

And Erica is helping us re-design our tool box of parenting skills and our whole family will be the better for it.

whoosh of air escaping from my body.

PS – all of your comments are dearly appreciated.

PPS – this is not going to turn into a blog all about autism – it has always been about my life, with a focus on quilting, and it seems my life keeps changing but through it all I keep quilting!

PPPS – I really hope that someone out there reads this one day and says ‘oh my god, me too’. We feel alone, but we’re not. 1 in 88 kids has autism.

enough with the P’s