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Thursday

All those expensive therapies...

I have been grumping for many years about all the online complaining from parents of children with autism: "Poor ME! Ruined my life! It's So HARD! It costs so much money! I ended up divorced!" It goes on and on and rarely fails to startle me-because while I get it, I just. Don't. Get. It.

That being said, I came to a few conclusions after reading a few of the blogs, newspaper posts and comments to both this month (Being that it is Autism Awareness Month there are a great deal more posts that are easily found).

Here's my take on the differences:

Many parents are horrified by the costs that come with autism. 
These costs have not effected me, because NSLM's assessments were by the school and later referrals from the professionals working for him so I paid nothing. . All 'mainstream' therapies (speech therapy, Behaviour Analyst, Behaviour Interventionist, Play Therapist, Educational Assistant) and tools (Books on teaching Social Skills, books on autism, videos on autism and social skills, cowriter, dragon dictate, comic lite, laptop etc) and training (conferences, classes etc for myself and any other adult working with NSLM) is covered by his funding (both his Ministry funding and by his School District funding.) 
Welcome to Canada! HOWEVER, woo and pseudo science is not covered.. (naturpathic, lupron, chelation, hbot, gfcf, homeopathic FC etc.) I did pay for one year of speech therapy myself, before we got NSLM's diagnosis straightened out.
So I guess for parents finding themselves having to pay out of pocket, particularly if they are paying the outrages prices for 'alternative' measures, it would be horrific.

Many of the parents posting talk about all the time needed to run their children to all these appointments, the cost of those appointments, resulting missed work and travel costing hundreds of thousands of dollars. 

Prior to school, I am the one that taught NSLM all his social cues, made visuals etc.  I read books, scoured online (recommended websites as per the autism team) and did what I was taught and did what worked. 

When NSLM started school, all those therapists came to him at school.  I was also blessed in that my then husband was able to support our family while I attended school with NSLM (K-4). We didn't have much ( I still don't have much, lol), but we had a roof, food and clothing so it was all good.

I read parents complaining that they 'gave up their lives' for their autistic child.  I gave up a great deal of freedom that childless adults have so that I could have the joy of being a mother.  I made that choice.  I was never angry to be a stay at home mom. I was thrilled! I might have been easier to not do all the hard parts, but I am grateful that I was able to be at home for all the good parts, and to do all the teaching.

I imagine, if I lived somewhere where all these therapies came out of my pocket I might be a little (lot) cranky.  But...Well... I still can't but help but think about what I would do if my NT child was...say... a somewhat gifted (or interested even) singer...OH WAIT!! She is, and I drive her all over, I pay HUGE amounts of money for lessons, equipment and MEGA personal sacrifice to support her talent-because I thought that was part of what I signed up for when I chose to be a parent. When NSLM decided he wanted to learn drums, I found a way! He is now the owner of a fine set of drums with weekly lessons. When my oldest wanted to play hockey, I cringed... but we would have figured it out... because that is just a part of parenting.  Finding a way.

So I get it, sorta.  Many of the parents that are complaining are from countries where therapists are not covered.  I get that, truly I do.  I can't imagine the struggle to pay the $150 hour for each of those therapists, at 2-6ish hours per week needed. I would have had to learn to be NSLM's speech therapist too, I guess.  Having seen how dramatics varied the options are from country to country I am wishing we could divert all that funding that goes to the autism/vaccine research into funding for therapies....

6 comments:

  1. I here you! Save your money for the proven therapies people, give the crap a miss.

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  2. I hear what you're saying, and I agree with a lot of it, but I think part of the point is that sometimes people just need to vent? And that might be part of what we're seeing online. We all do our best, and sometimes we need to be able to go somewhere and say, "you know what? this sucks sometimes."

    For those that have to pay for those therapies, I bet most of them DO find a way, but as you say, they're cranky about not having the level of state funded support you get in CAN, yanno?

    I guess this post felt a little to me like "why are you complaining?" Sometimes people need to complain. I think that's ok.

    ReplyDelete
  3. Hello LifeInTheHouse, thanks for the comment! I am sorry that this post came across as a 'why are you complaining." It was more of a small epiphany I had that some of the moaning over finances in regards to autism can be explained by the lack of health care coverage in other places, as well as by the parents who do have excellent coverage but are using 'alt' measures (as these measures are not covered.)

    I agree completely that people have the right to rant,and the need to do so. Unfortunately there are parents of ASD kids that go out of their way to yell from the rooftops that autism caused them divorce, poverty and is 'worse than cancer.' IMNSHO that is not healthy venting but hurtful and scaremongering.

    I wish that other countries had the same level of coverage as we have hear. Then, at least, only the 'alt' therapies would be uncovered.

    Hellzyeagh to your 'this sucks sometimes'. Parenting can get ugly, with no warning lol. I have three, and its a good day if all three like me at the same time. :P The whole point of the post was more, "If you live somewhere that does not cover the proven therapies, my sympathies are with you. Try, please, though, to remember that as parents we all get the not so fun challenge of finding funding for our childrens tutors, music lessons, instruments, art projects, science fairs projects, talents, weaknesses etc. Kids are expensive-True. But not just kids with autism."
    Hugs and Laughter

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  4. I don't know, in fact I'm quite glad I am not from one of these countries where you get therapies as soon as you are diagnosed, since I'm on the internet I have heard so many horrors stories about some of these, so many autistic people who have gone into abusive trainings and learned to hate themselves and their way of being.
    And in Switzerland and France we don't have autism speaks (Yay!)
    The downside is more, people not believing that we could be disabled, and failing to know that it is possible to be so different in our brains from theirs, while looking "capable" according to their criteria, full of the medical model of disability, and one of the worst feelings, feeling that people arround deny the possibility in itself that you could be the way you are... but apparently all these problemas exists also in the countries with better diagnosis since longer than here.
    In fact the worst part of growing up undiagnosed is really more the fact of feeling so alone, and not meeting a lot of others autistic people at the same time.

    Of course there is also a lack of accomodation and understanding, and for those who are the most atypical it's still very unadapted... but I was in a very interesting position, with the way my condition is, I've seen that the teachers I had, and the political climate changed a lot of things about the way the things were for me, when I had only my ADHD diagnosis and not yet my Asperger's one, and I went to schools were the adults were really intersted in accomodating me, all has gone very well...
    So probably the most important thing that we need is really so much more about acceptance, accomodation, trust and good will, from the people and not so much therapies.

    ReplyDelete
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    ReplyDelete

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