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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.

autism-symptoms

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.

chart

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.

IamMoreThanAutism1

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.

autismPS – 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

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11 Responses

  1. I’m glad to hear that you have found help for Max. I can not imagine how frustrating it must have been to know he needed help but not knowing where to get it. This new solution sounds great. Wishing Max and your whole family lots of luck as you enter this new area of learning.

  2. Hope you get some results (however big) soon, to give yourselves hope that this new approach will indeed work in the long run.

  3. My brother is 26 with autism. Lives with my dad. Does not have a job. I do like talk with him, but as he doesn’t get social cues, is hard for me to call home (he has the phone for 2 hours even if I want to talk to my dad instead). Growing up was stressful and due to issues you address, tantrums and discipline were fast, loose, and sometimes unpredictable.

    That being said, he does get better (hasn’t put his hand through a window in years – he was hot and wanted to fix that), and he does connect with different types of people in many different types of ways.

    He likes radio stations, and I have heard that with a few other autistic people (likes DJ’s and radio) as well, he talks to and frequently gets them cake at the radio station for his birthday, and no he doesn’t work there. He likes math, puzzles, video games, making up his own rules for video games, paper versions of mario games that he’s created (VERY creative), has created some very hard to play versions of mario with some sort of hacked code video game before, mad libs, dice, calculators, and transferring audio from the radio to his own personal headphones. He always has to have something playing in his ears. I’ve told him he should start a podcast, and there is some of him that would be very well at that I think.

    However, trying to find a job has been stressful for my dad. I don’t know how much my brother wants a job, to tell you the truth, but I also think some of the reason may be his personal hygiene isn’t all that great. Schedules always seem like a good idea, routines are good, but be ready for days when something unusual happens, and if he’s anything like my brother, don’t let him near the weather channel. Having the weather be something that no one can control makes my brother very nervous.

    My brother has walked himself home 1.5 miles from college classes before, enjoyed college classes in the areas he was interested in. And even though HE doesn’t see it or seem to care, I always notice how his classmates smile and talk to him when he sees them around town.

    I wish I knew what to tell you worked for our family, because it’s easy to say ‘it didn’t’ (my parents weren’t strict or incredibly disciplined with any of us, and sometimes I wonder if that was good or bad for him) but even with the autism, and his gaffs, it’s nice to see and visit with him, and unless it’s April through September (tornado / thunderstorm season), he’s a pretty happy guy, which is important.

  4. I really have my fingers crossed that you have found a place to start and that you are able to see some results, no matter how small.

  5. Darla, thank you so much for writing this and sharing it with me. Max also loves music – loves to play songs in youtube on an ipad or the computer we just put in his room. Loves to dance! Loves to play his guitar (to death). Erica came back today with lots of visuals for us to use with him and a schedule based on what we told her yesterday. It’s exhausting. But we are seeing some results – the most substantial to me is him staying out of the kitchen while I make dinner. It’s small, he’s underfoot, close to a stove, cries about how I am making dinner, and grabs at everything. I made dinner alone tonight for the first time in 4 years. Small victories. I just want him to know that he doesn’t need to feel alone or scared (he has really high anxiety levels) and I hope that we can provide a sense of peace so that he can be alone for a few minutes without thinking it will last forever…Thanks again Darla – Allison

  6. As a just retired speech therapist, I can say with certainty that many, many of my students with autism smiled, made eye contact, and gave me great hugs. And then if I didn’t go “something” just like they wanted their coping behaviors could take off faster than Superman. Keep writing Alison. It is your life and quilting is just part of it. And I bet a lot of your readers have had autism touch their lives.

  7. Thanks Kelly, This new world we are in has opened my eyes so much! Just like when we found out he had CP – the difficulty latching (he couldn’t), difficulty keeping his tongue in his mouth – suddenly, all of it made sense in hindsight.

    Erica came back yesterday with a play box, a schedule, social stories, visuals, and advice. We are overwhelmed by the changes we have to make to our lives and while I admit being resistant (not this time; but in the past) to changing our parenting methods it has finally clicked that we are changing our family methods.

    It’s all a little confusing right now – which chart when and is he mad because that is OK and we handle it one way or is he in trouble and we handle that another!

    Thanks for your encouragement to keep writing! Allison

  8. So glad you got a diagnosis and help! My son son is also very outgoing, so we were also surprised to find that he is on “the spectrum”. We got our best help through a study at the state university. He is very high functioning and entering his sophomore year in college, but we did the rounds trying to find an educational setting for him, since he was so disruptive and “odd”. I remember the relief to get a diagnosis (at age 10), and he says it was a great relief to him that he wasn’t the only one who had these difficulties. Best wishes to your family.

  9. It is a learning curve and a process which takes time. It just does. Everything doesn’t have to be perfected at once. And it is true that something that is working for your family may stop working as your son grows and develops and then the new “something” will be tried.

    My biggest, strongest piece of advice for parents is to live in the moment. By that I mean don’t try to project yourself into the future and worry about how “will he ever be able to do….” You can plan for the future but don’t let the future frighten you. One of my parents whose child I saw for eight years told me a few years ago that she spent fifteen years trying to fix her broken child and she wishes now that she had participated in the therapies for her family’s good and his good without that overriding sentiment being the prime directive. She worried that she sent the message to Nathan that he was damaged. I understood what she meant.

    The really, really good news to me is your son’s capacity for joy and the state you live in. Your state is light years ahead of most.

  10. You will learn so much from this child, mostly how much other parents who don’t have children with ASD are missing from their lives. I teach students with special needs and every day I am encouraged by their insight, tenderness, and wisdom. It’s a joyful journey, embrace it!

  11. Hi
    I am a mother of 3
    Our eldest child is going to be 22 in September. She has autism . We also have two boys almost 18 and 15 years old.
    When she was young. The Dr said she will not be able to go to a normal school , nor she will be able to read.
    She went to normal school . She speaks fluent English and French. She also read in both languages.
    She now volunteers at a day care and church with young children. She is doing sport with special Olympic: snow shoeing, bowling, track, soccer, baseball, and curling. She wasn’t goos at sport when she was young . But with special Olympic she learn to be more social and have be active .
    We did all therapy possible, I worked part time until she was 4 years old. Then I became a stay at home mom
    I still find it hard not to have a profession anymore ( I was a dental hygienist) but this is the best for her, for our whole family. It gave me the opportunity to work with her every day. Everything was an opportunity to learn , knowledge, practice social skill etc
    Do your son read yet?
    When our daugter finished grade one. She didn’t even know her alphabet. But a Dr gave me another way to teach her to read. We practice and practice. The Dr explained to me that words are only puzzul pieces and we can learn to read without knowing the alphabet . Sh was right! Our children can learn, we just need to find the right way to teach them. I still think that way. If she doesn’t understand one way. Let’s find a different way. Never miss an
    Opportunity . Be creative…
    The discipline we use is a lot of before and after. We still use it. When she was young it was :you put away a puzzle before taking another one, you can do this after you are done that. Now that she is 21years old, it is : you have to empty the dishwasher and feeds the dogs before you ca call your boyfriend. Yes she has a boyfriend since one year.
    Everything (almost) I have dream for my daughter is happening
    Keep faith in him

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