Sunday, 1 May 2011

How Autism Changes One's Life

So...  some of you out there have been living with autism for a while, and know exactly how the diagnosis affects your life.  Some of you out there are friends of mine, or friends of friends, or friends of friends of friends...  you know, wanting to be supportive and reading what I post, but sitting there thinking "What the hell is she talking about, I just can't relate..."  God bless you for trying!  You truly are good friends!  Maybe you're new to autism, and wondering what the road ahead looks like.  So, let's go to the very beginning, shall we my dears?

Let me tell you 'bout the birds and the bees and the flowers and the trees...  kidding!

Autism, the definition:  a group of developmental disabilities that can cause significant communication, social and behavioral challenges.  Developmental...  what is that?  Exactly what is sounds like...  the mile stones every child meets are met late...  Their learning is impaired...  Okey dokey...  so ummmmm, what does this look like for those of us involved in the daily care of loved ones with autism?

First, you receive the diagnosis.  Just to make our life even more confusing, we have 5 types of autism spectrum disorders, also known as "Pervasive Developmental Disorders."  They range from a severe form called autistic disorder, also known as classic autism, to a milder form called Asperger Syndrome.  If a child has symptoms of either of these disorders, but does not meet the specific criteria for either, the diagnosis is called pervasive developmental disorder not otherwise specified (PDD-NOS.  This is the form of autism Dayton is diagnosed with).  Other rare, very severe disorders that are included in the autism spectrum disorders are Rett Syndrome and childhood disintegrative disorder.  Now that you've got a diagnosis, you must digest it.  Delays in your child's development can no longer be explained away by your child being a late bloomer.  His or her behavior, actions, delayed speech, quirky behavior and other "delays" are a result of a neurological deficiency... Unless your child has been diagnosed with Asperger Syndrome, your child will be behind academically.  For example, my son is half way through grade one, but sits in a grade three classroom, because failing him is NOT an option...  Grrr...  More of this on the next post, I promise you.  The title to look for is "Choosing The Right School Division For Your Child With Autism."   You will fight for your child's right to a quality education. 

Second, you need to deal with your grief.  Once you understand what I've just told you about the diagnosis and you understand the magnitude of what this means, you will grieve for the child you "planned" to have.  Denial is first.  I remember that one.  "They're wrong, let him grow up a little, jeez!"  Next on the list will be anger "this is so not fair!!!  (and then you throw a huge temper tantrum).  Then we have bargaining.  Oh yes.  "God!  Do you hear me?!  I'll go to church every Sunday and volunteer at the local shelter for the homeless, just take this autism thingy away!!!"  Once you're done bargaining and seeing no results, you get depressed.  The depression stage takes the longest to overcome.  I still struggle with this one (and here you thought I had it all figured out, didn't 'cha?).  Finally, acceptance.  Acceptance is awesome, we can't see the light to acceptance at the beginning as we're in denial or too angry to think we'll ever accept it, but once you do, your child will make a serious connection with you.  Trust me, I've seen it with Dayton.  No one "gets" him better than I do, and he knows it...  Well...  maybe one more person, grandma Karen...

OK, so we've covered the first two things to get through.  These two sound tough, no?  Your life's about to get busy, so hang on to your horses (never, EVER say that to my boy...  He'll look for them for hours!).  Get a calendar, cause your life's about to get busy.  Day off?  Not with autism!  Ready, set go!!!

Now we're gonna dive straight into bureaucracy!  Oh yeah!  You will be connected to family services and they will get you a support coordinator.  Most of these people know nothing about autism, and don't care.  You'd have better luck of winning the lotto or finding the Loch Ness Monster than finding a good support coordinator.  I've found one, but I'm not sharing.  I'll fight you before I let her go!  Then you have to get speech therapy, occupational therapy, physio therapy, all of which you can only get before your child starts school.  If your child doesn't get the diagnosis before age three, you're pretty much SOL or s..t out of luck.  This is the case with my little guy.  I fought for four years to get his diagnosis, and he finally got it, three months before turning eight years old.  Unless of course you have a bottomless pit of cash, well then of course you can have services, any freaking service you want, including a diagnosis!  I don't think there's many of us out there with this kind of money.  As it is, I'm spending just under $500.00 a month for Dayton's medications and social skills group. I'm not going to go into how much I spend for Dayton's supplements, diet and coming up soon, Kumon Learning since the school can't teach him anything.

Once services are in place, your schedule fills up pretty quickly.  I can also tell you that therapy is ON GOING, even after the therapist has left.  It is up to the parents to follow through with the therapy, not the therapists.  It is especially important to follow through when in public.  This is where your child will learn to generalize what was learned in therapy and apply it to real life situations.  During my medical leave, I can honestly tell you I've been so much busier staying at home than I have been going to work!  By the time 7pm rolls around, I'm ready for sleep.

Schedule, schedule and schedule your child's day!  These kids thrive on schedules for two reasons:  once, it shows them what to expect during their day.  Two, it also shows them that some of their favorite things are included during the day.  I know for Dayton video games are super important, and I need to have a picture of a gaming remote in his picture schedule if I want him to comply to any change in his daily routine. 

We're not done yet, we still have all the follow up appointments at the doctor's office and by the support coordinator and CFS if you have them involved to advocate on behalf of your child in the school system.  Yes, managing the care of a child with autism is a FULL TIME job.  Only thing is, this full time job lives with you.  There is no break, and God help you if you get sick, because there's no one for you to call to "cover your shift."

We love our children, they are the air we breathe, with or without a diagnosis.  With a diagnosis of autism, we still give our children everything that goes into raising a child, the affection and love any child gets from their parents is the same for us.  The difference is during our play time...  During play time, every move I make stems from something I've learned from a therapist.

So, if you yourself don't have a child with an autism diagnosis, but have friends that do, cut them some slack when you ask them out and they say they're tired and would rather you come over to their house instead.  Their child is surrounded by their toys and the parent's saving grace - their bed when bed time comes.  Maybe offer to babysit so the parent can take a nap.  I'd kill for a nap right about now.  Offer them an ear to vent.  I've been fortunate to have a good grandma for Dayton, grandma Karen who is always listening to me rant and rave without complaining.  She's been a rock of support to me and an amazing grandma to Dayton.  She actually "gets" Dayton and he knows it.  He loves her for it.

If you've received a diagnosis in your life just recently, don't look at this post and start crying, please!!!  While yes, you will be working with your child much more than a parent of a typical child needs to, believe me when I tell you, it's all worth it.  I wouldn't change my son for the world!  But I wish I could change this world for Dayton.   Remember, everyday God takes you by the hand and says, "No matter how difficult the path you tread...  I will never leave your side."

Consider yourselves hugged!


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