I've always taken great pride in the ability to see the good - the silver lining - in my life and in my daily challenges with my kids. I've blogged time and time again about the good and fun things that go on in our family, and yet I've also been pretty open about the not-so-great things that happen... I make jokes about both the good and the bad. I'm usually pretty good at being somewhat witty sometimes. (Yes - that is a nearly nonsensical sentence on purpose. - LOL)
Today I'm going to talk about some frustrations that have been building up lately. I'm going to talk about how. for the first time since she was born, I've let myself wonder what life would be like without her. It hurts to think that way, and it hurts to admit it... but I'm going to, and I'm going to share it with you.
Both the hubby and I are frustrated. We're tired - exhausted really - and we're leery about the future. The vast majority of parents experience plenty of bumps in the road, but live with the knowledge that once their kid turns 18, they as parents will be rewarded for their toils with a certain amount of new freedom.
When our kid turns 18, we don't know if she'll be capable of being granted independence within our society...
And I should mention here that I'm actually
NOT talking about our daughter with Down syndrome. No - I'm talking about our daughter with the Asperger's diagnosis. We're not too worried about The Skink. She is so social and outgoing she'll probably have a job through high school and at some point her dad and I will be begging her to stay and not to move out.
No - I'm talking about our very high-functioning autistic daughter. Asperger's... the diagnosis initially fell on our ears like music because it meant there was a word for the hell we had been putting up with since her birth.
(She's beautiful, isn't she?)
I don't want to give the impression that all children with Asperger's are hellish. They are NOT! If you've met one child with Autism/Asperger's, you have met one child with Autism/Asperger's. Simple as that. They are all very different and they all have their very own quirks and personalities. In fact I am an Aspie myself, and my mother would tell you I was incredibly fun and easy to raise! (My high-anxiety quirk as a child kept me out of trouble. I was far too straight and narrow at that time to do anything I saw as being "against the rules." I know what you're thinking - "Holy cow! What
happened?" LOL - with time I learned the world would not implode if I let my rebel side lose... at appropriate times of course.)
Our daughter just happens to have some very hard to live with quirks. She did not inherit my "don't break the rules" thing. Nope... she seems to seek out new and more devious ways of breaking rules. And she seems not to care a bit about ramifications or punishment. No matter the punishment she receives, she will continue doing the same negative behavior over and over and over.
I've talked about her stealing (kleptomania) a number of times.
See one post here. The issue continues. She "relocates" stuff from her brother's room, stuff from the medicine cabinet, stuff from her classmates' desks at school, stuff from her grandparents house and stuff from wherever else she decides to take from. Well... I should rephrase that. Her kleptomania is an OCD behavior - a side effect of the autism spectrum disorder. It is something that can not be talked or punished out of her. It just is, and we just have to deal with the issue one day at a time. (Yes - we do punish each and every occurrence - that we find out about - all to no avail... but we keep on trying.)
She still has meltdowns. Lots of them. The pent-up stress from the day is released at home each evening like a dam breaking. Anything at all can be the catalyst for the release. Homework is a given catalyst. If she doesn't melt down over homework, it could be anything else - like not being allowed to eat ice cream just as I'm getting dinner on the table. It starts with a whiny voice... like a jet engine warming up... and progresses to tears and running away, throwing things or even violence. In this state she can't hear reason... in fact I'm not sure she can hear anything at all. Once the dam starts breaking, there is nothing that can be done to hold it together. Nothing. Ever.
And this doesn't always happen only at home. She has a very low threshold for stimulation and tends to become very overstimulated in busy, loud or colorful places... like the grocery story, fairs, festivals or any new and different place we might try to take her.
She is dependent upon a set schedule and doing things in a very set way. Any variation from the schedule or trying a different way of doing something causes a huge amount of anxiety in her that can erupt in a myriad of ways.
She has exhibited a variety of very unusual behaviors over the years. For a time she was urinating in strange places. Into purses, onto toys, into cups that were kept like treasures in the back of her closet. Thankfully that little habit has gone away!
Then there was the Mark of Iraq phase where she would mark all of her clothing and much of the rest of the family's clothing with a single cut from scissors. On shirts it was usually in the front, just to the side of the left arm.
Instead of playing with her toys in an imaginary way, she prefers to line them all up in neat, straight lines. This is ongoing.
She takes food and eats (part of) it in strange places... then leaves the rest in hiding. Granola bars, pop tarts, yogurt, cheese... you name it. Sometimes I don't find it until I tear the place apart looking for "the smell." Other times I just follow the ants to it or stumble upon it in a sock drawer or some other odd place by chance :(
She hoards or squirrels things... She may take a bag, backpack or purse and fill it (stuff it, really) with apparently random items, or simply make great piles of things in random places.
Nobody is allowed to touch any toys that are lined up or in a pile... ever. Or else!
She is downright cruel to her little sister, but she just doesn't understand that she is being cruel because she is not in possession if the clear sense of empathy that other people are born with. She is having to learn empathy... but for her it is just a matter of going through the motions (when she wants to).
And lately? Lately her newest trick has been hiding. Not like hide-an-go-seek hiding, but creepy hiding. Like hiding under Daddy and Mommy's bed. We've found her under there (and punished her for hiding under there) numerous times in the past months. Once we discovered her under there while we were... ahem... you know. And she keeps doing it. We now have to check under our bed and in our closet before we... you know. And that does
nothing for the mood!
She also hides behind one of the couches in the living room. I have no idea how many inappropriate murder mysteries she has witnessed from back there. It's exhausting trying to remember to check for her in this place or that when we've already dealt with a day of melt downs and OCD behaviors and just want to sit in a semi-coma-like condition for one hour and watch a weekly series.
It's exhausting!
We've had therapists come into the home and work with her and work with us. The therapists are required to work with us under the assumption that many parents just aren't parenting well. Every time we get a new therapist (we've had a few because Iraq
is hard to manage) they soon come to the conclusion that yeah - we
have tried everything... to no avail. So usually they want us to go back and try something again. We always do... to no avail. But if it was deemed "worth a try" (again) by the therapist, we do it.
We've tried positive reinforcement, negative reinforcement, every combination of both reinforcements and a certain extent of letting her have what she wants to lower our parental stress level (as suggested by her psychiatrist). The behaviors continue.
And you know what everyone (doctors, therapists, teachers, etc.) tell us now?
"Well, just keep trying!"
For 9 years we have just kept trying. And at the same time we have been (still) dealing with a wide variety of bizarre and unusual behavior each and every day that most other parents will never be confronted with. Ever.
And because she is so difficult , we never get a break. When we moved from the city to the farm in August, my wonderful mother kindly took the two girls from August 17 until the evening of the 20th so that I could dedicate myself to packing and moving. My poor mother was dealing with some bad arthritis pain at the time, but by the 20th she called me, almost in tears, to say that she couldn't keep them any more. That 5 days was long enough!! While it hadn't been 5 days, I totally understood where she was coming from! Every day spent with Iraq takes the work of 3 or 4.
So while the one thing Daddy and Mommy
really, really, really need is a vacation, it is unlikely we will get one any time soon. We went on a cruise when Iraq was about a year old - my fantastic sister watched Iraq and Broadway for us for a whole week - but that was the last time we were away from her (until the move which wasn't exactly a
vacation by any stretch of the imagination).
You know what? It
is hard. It is
really, really hard, and there is no defined end in sight.
The Skink? In comparison to her big sister, The Skink is
really, really easy! Even though she wasn't fully potty trained until she was 6. Even though she still doesn't understand simple things like staying out of a road or other basic personal safety issues. Even though she has had some health complications related to her prematurity. Even though she learns things slowly. She is
still far easier!
So why am I writing all of this? I'm writing it because I don't think I'm the only person - or that my husband and I are the only couple - feeling overwhelmed by autism. I wanted to share it so that other people who are at the end of their rope (and still being told by the professionals to "Just keep trying,") know that they are not alone. I am sharing this to give people who do not have a child in the autism spectrum a little perspective. Do you
know how crushing it is to us when you give us dirty looks in the grocery store because you assume our child is just spoiled and that we are bad parents?
And finally I am writing this because I have not gone into depth about these feelings before, and I don't want anybody to be under the incorrect impression that I am an awesome and infallible mom who wears a "SuperMom" cape under my clothes. (Well - not usually - it gets too hot and constricting, I find.)
Yes - there
are days I would sell my middle-kid to the first band of passing gypsies. Of course those are the days that the gypsies don't pass by. There are days that I fantasize about life without this child and all the stress and drama. I believe I wouldn't have high blood pressure or have had a cardiac arrest were she not in my life.
And then I feel horrible and guilty for allowing myself to think such things. What kind of parent am I who would wish away her child? I am falling short of my expectations of myself... which are far from perfect to begin with.
I am a "good enough" mom... but to keep it real, I'm also human and I have my moments.
So please leave a comment! Don't forget to include the dates and times you can "babysit" my 9-year-old for me!
JUST KIDDING!
I love my readers and I wouldn't want to torture you that way!
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