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Saturday, March 14, 2015

Don't read this if you have a newly diagnosed child or if you don't like negative posts!

As the title says, if you are new to the world of autism, or if you are triggered by anything but positive words about living with someone with autism, please don't read this.  I have been thinking lately about political correctness in writing about autism.  There are things that aren't supposed to be said.  It's not that anyone says I CAN'T say them---it's more I self-edit what I write, but I do this to avoid upsetting people.  I don't want to discourage those with a newly diagnosed child.  Janey's course is not typical.  Most children with autism will make a lot more progress than her.  And I don't want to hurt the feelings of those people WITH autism who read this blog, because the ones that have introduced themselves to me are wonderful people, people I care about.  But after a tiring day like today...well, I kept thinking of a few things I want to say about life with autism, my particular life with autism.

1.  There are days your child is going to drive you crazy, make you cry, make you despair.  There are days that all the positive thinking in the world can't cheer you up.  Some days, you can be the autism super-parent.  Other days, you just can't, and you are going to just get through the day, however you can.

2.  Your child might never be fully toilet-trained, despite all the books and articles and advice and school interventions and timers and special underwear and everything you try.  Your child might be 10 and still in pull-ups.  They might actually pass from pull-ups to Depends type underwear.  I'm talking about you, Janey.  They might just never get it completely at all.  

3.  Your child might sometimes be aggressive toward you.  They might hit you, bite you, scratch you, bend your fingers, really, really hurt you sometimes.  There are many reasons for this, and I do understand the reasons, but when you are at the receiving end of a huge bite, you aren't thinking reason.  You are thinking pain.

4.  It's very easy to get your child evaluated.  It's quite easy to get involved in medical studies.  What is not easy to get is respite or help.  I could have Janey tested every day of the week, pretty much, and between the two insurances she now has, it would be covered.  But no insurance or financial help covers even one second of respite.  I could get people to come in the house, while I'm here, and help with Janey, mostly likely from what I've heard, but I'll say right here---that isn't respite.  That is not what I need help with.  That is like having company, company I need to talk to and entertain and clean up for.  That is more stress, not more help.  

5.  Your life gets very, very restricted.  I talked to a fellow autism mother about this, about how her non-autistic daughter might get a chance to be in a once in a lifetime performance, and all she can think about is "Who would watch my daughter (the autistic one) so I could actually go see her?"  I am thinking that currently about my son Freddy's high school graduation.  One night, maybe 3 hours.  And even that is going to be hard for both Tony and I to go to.  

6.  You will get in touch with the less kind parts of your own personality.  I feel resentment, sometimes, toward people with non-autistic kids.  I feel angry if I don't feel like they appreciate what they have.  I don't feel this all the time, but when I do, the depth of my feelings surprises me.  I don't want to be that person, but that person shows up, unbidden.  

Now, I could go on and on.  But I won't.  All the parts of life with Janey are not nearly this bleak.  I adore the girl, I can say that without a second's hesitation.  But life with her is hard.  It has wonderful moments, I have met so many of you wonderful fellow autism parents out there, I have met far more than my fair share of fantastic teachers and therapists, I have delighted in Janey's uniqueness.  But just saying those things is not speaking the whole truth.  I think about the emails I sometimes get from parents who are very, very discouraged, and I think part of that is the hesitation we all have to speak the other part of the truth.  It's a tough road we travel.  Although I have a near-compelling urge to not end on a negative note, I will, just this once.  It's a very tough road.


Freeyoke said...

Americans, in general, are positive people that like happy endings in movies for a reason. Your child will change for the better if you botex your smile in place but it doesn't work like that for some families. The sleep deprivation, time for therapy appointments, social isolation and extra expenses can wear you down. Your mileage may vary and it depends on kid's point on the spectrum but the overriding theme I get from autism orientated books and on online forums comes in a sugary sweet flavor. That just isn't me as I plan for worst case scenarios but hope for the best. My daughter finally started to get the potty training but doesn't do it independently but I see a ray of hope now. She's seen plenty of other kids use a toilet but seeing her little brother do it gave her some kind of inspiration I guess.

Unknown said...

Thank you for being so open/honest about your feelings. While the good far outweighs the struggle, it doesn't mean there aren't hard times.

Two Brothers One Journey said...

Love this post. You are so right! I am sending you a cyber hug!