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| Katie and her Godson Jay |
I wish this was a thank you letter. That after watching yesterday's show (Living With Autism) I would be so moved at its attempts to tackle what living with autism is really like that I would be inclined to write you a big fat thank you letter. Alas, this is not the case.
Katie - you did us wrong.
Who is us? Us is the OTHER side of autism. The messy, ugly, uncomfortable side...where so many of us "live" with autism in a place that looks quite different from yesterday's show. It's very crowded over here on this side...
The side where parents are physically drained and mentally exhausted just trying to make it through the days...
The side where the kids remain non-verbal...and in a constant state of frustration...where trying to communicate often leads your child to hysterical tantrums and sometimes violence...
The side where financial struggles are plaguing families in multiple ways - extra expenses related to non-insured treatments and therapies, special diets, extra babysitting - piled on top of parents that have either left their jobs to care for their child, or had to take a lower-paying position in order to be more available to their child...there is never enough money on our side...
The side where the kids are not yet potty-trained beyond the traditional diaper sizes...where you have to go online to find diapers...where you have multiple poop-smearing stories to share at parties...(oh wait - we don't really go to parties on this side)...
The side where the divorce rate is even higher than the rest of the country...and where even the couples that manage to stay together still live life as two families - where one parent stays home with the child that can't go to the parties and functions and places that just don't work - and the other goes with the other kids...or alone...or just not at all...
The side where your child's "talents" and "gifts" are less musical and artistic and more breaking things, escaping, and remaining in a constant state of motion for more than 10 hours a day...
The side where siblings also suffer...and have feelings of resentment...and then feel guilty for feeling that resentment...and act out on these feelings in numerous ways that only add to the fun for the parents that are already struggling to get through the days...
The side where people stare...and whisper...and judge...and say the wrong things - sometimes because they are uneducated asshats, but sometimes because they just don't know what else to say...
The side where any interaction with members of the medical community leads to frustration and resistance...because autism is ONLY neurological, they say...where they are only too happy to discuss the importance of immunizations with you, but not as willing to chat about why your child has bizarre bowel movements, strange rashes and a diet that consists of carbs only...
The side where parents spend hours in closed rooms with administrators from school districts in exhausting IEP meetings, begging for services that should be given willingly...where they are cast as troublemakers, just for trying to do right by their own child...
The side where the word spectrum is a dirty word...where that word divides the autism community in a bitter and self-damaging way...where children that fall on opposite ends of said spectrum do not desire or require the same actions...and how the invisible walls between the various locations of this spectrum serve as roadblocks to true progress for all...
The side where you find yourself wondering if and how your child will ever function in the real world...where you question what will happen when you are no longer here...where the future is unknown, frightening, and keeps us awake at night...assuming that our children are not already doing that for us...
You see Katie, it is a very different reality over here on our side.
So go ahead and show the good stuff...show the Temple Grandins and the Jacob Barnetts and the Chad DenDantos and the musicians and the artists and ALL of the gifted and talented members of our community and let their accomplishments inspire as they should...but you have to show the other side...you can't show the good without the bad...at best, it is irresponsible journalism...at worst, it is a step back for all of us...
Signed,
An Autism Mom Living On The Other Side
Such great points.
ReplyDeleteAMEN! Great letter! I have a friend who has a son with Autism and its stressful. Even if they are verbal they sometimes cant explain why they feel a certain way. Bravo for getting the "other" side out.
ReplyDeleteOr the kids that recover from services that cost $90,000 a year. Wow we all have access to that!
ReplyDeleteWow!.....just what I was thinking! I am the grandmother of a beautiful, sweet, all be it angry, frustrated,non verbal,autistic boy. I care for him 4 days a week as well as his 2 year old brother. No one knows the side we see. Just knowing someone else understands is encouraging....Thank you. I am fortunate that I have worked with autistic children in the past and my skills helped me recognize and prepare me to care fo my grandson. I plan to follow your blog.Thanks Again Gma Donna
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