Sunday, August 16, 2009

I hate Autism

Open House at School happens tomorrow, where we get to find a new teacher (eek!) and a new room. I think the chaos of summer school will help in this transformation...Molly should be THRILLED to have a homing spot, even if it's in a different place than last year.

We've been talking to our teachers, and have found out they have TOTALLY moved her spec ed room downstairs (im sure molly + the stairs had something to do with that decision) and rearranged all of the lower grade hallway.... so instead of just running in and dropping off our school supplies tomorrow night....i will be taking molly in at 5pm and staying until 7pm! :-) or however long it takes to make her feel at home, and understand the new layout.

Steph (sp ed teacher) looked just FRAZZLED the last time i saw her...she's pleased with the look and the layout, but like me, worried about what her "routine oriented" kids will think of the change. All the teachers i know have lived in the classroom this week, preparing it for the onset of kids...I LOVE YOU GUYS!! THANK YOU!!

This will be our first year with the dual diagnosis...I will be working on molly's welcome letter to send home to the parents of her classmates's gonna be hard one to compose this year. *sigh*

Down Syndrome affords a sweet, loving kid who interacts socially, knows how to laugh and loves to dance. I can celebrate everything about really has been a positive force in our lives, and introduced us to the most amazing parents & friends. We headed out into the world singing songs of diversity and had a little SPARKLER to show the world that just because she had a duplication in the 21st chromosome, it didn't make her all that different from your child.

Then, Autism entered our lives.

Autism, to me, remains the black cloud that hangs over the first diagnosis. I hate that it snuck in and has stolen my little social butterfly away from her classmates. I hate that it has stolen her words. I miss catching her eyes with mine and having her smile at me and run for a hug. We still have our little moments, but mostly I have become "the provider". Because of the outbursts, typical kids will shy away, now. Molly is learning to communicate her frustrations, but it's still easier for her to throw something at you....and she has a good arm. Adults can understand not so much.

She loves being among peers...but not too close. Her hugs come, but it has to be at her discretion...she doesn't understand why they don't make "Dora" clothing in her size anymore, and could care less about the Jonas Brothers.

I reallllllllllly hate that everyone has an opinion on how we raise our autistic children. We DO discipline, but i can't BEAT HER everytime she is just being autistic. If you learn anything from reading this rant...learn that you should keep your nose out of parental interaction with their autistic children....we find it rude and find YOU to be incredibly ignorant. She is not a typical child...things have to be handled differently....and while I'm on the soapbox...keep your disapproving looks and "if that was my child comments" to yourself, too. WE CAN SEE YOU.

Autism is just different. She retreats into her own little world and is perfectly happy there. She just needs a few supplies...something to dangle, some cheese pretzels, a glass of juice, and spongebob on the tv.

She does not need to be dressed, the cloth irritates her...she loves the bus, but can't tolerate the noise....She loves baths, but brushing her teeth feels like we're brushing them with razor blades...toothpaste like acid on her tongue, and cutting her nails to her constitutes an if you see a child strip nekked in public, or think their nails are a little too long PLEASE JUST UNDERSTAND.

Im a little more down about it today, as I got a chance to see her interact with her typical peers this week...and the distance between her and them has again grown by leaps and bounds. The only way to battle this is "inclusion" with the other 9 year olds...that is why even though she is not going to understand the math class, she will be sitting there with the other 3rd graders. She may be working on something else, but she will be there, learning to sit quiet, to take her turn, to raise her hand and which kid belongs to which name.

My attitude is always a work in progress. I seem to wallow in my grief as far as the Autism diagnosis...still stuck in the "anger" phase.... spent two years in denial..and i wonder how long i'll be angry.

I want to find a cure for this disorder, but even THAT scares me...if im angry now with no answers, imagine how ticked I'll be when i find out that this all could have been prevented. Down deep, i know i did something to cause it....although the govt won't ever tell me what it was. I doubt they ever do.

For now? Teach your children that it's ok to be different, that everyone has a right to be in class. Teach them that the word "retard" is NOT acceptable as an adjective (it has become a hate word) Teach them to take the time to understand those children who are different, PLEASE DON'T RIDICULE THEM....and teach them that it's ok to like them, it's ok to invite them to a birthday party, and it's ok to walk up to their mom and ask them anything you want to help you understand.

Know that one out of every 150 children's parents will thank you and respect you for it.


Momma Jones said...

Well said momma. I'm not sure how I stumbled upon your blog but I enjoy reading it. My 3 1/2 almost 4 year old son is High Functioning and sometimes people just don't understand the outbursts or tantrums. I keep little laminated cards in my purse that I give people when I hear them whisper nasty things. It tells them that we are doing the best we can with our autistic child and we aren't bad parents. Then gives them a little insight about autism. You're right, we can't spank them every time they have autistic moments. It doesn't work that way. We have to find alternate ways to discipline because the normal disciplining methods just don't work with autistic children. I'm learning more and more that people have NO patients with special needs kids and it infuriates me.
I hope your little one adjusts well to the changes. I know how hard it is when things change in their little world and the security they felt from the normal routine is shattered.

datri said...

Oh, I am so there with you. Down syndrome is easy. But Autism sure does suck. Big time. Sometimes you hear parents of kids with DS say that they wish there were more kids with DS. I don't think I've ever heard that from a parent with a child with autism. I think I've pretty much blocked out the stares and rude looks (no one's actually come up to me and said anything) like when Kayla did the stop and drop in the middle of the airport terminal and started flapping like a chicken while yelling. Lovely.

Moonfairy said...

I'm sorry to hear that you're having such a rough time right now. We're thinking of you and sending sunshine to cut through that black cloud all the way from Colorado. XOXO

My name is Sarah said...

This is Joyce. I have no personal experience with autism and what you are going through so I can only imagine the heartbreak it causes at times. The bittersweet moments. My hugs go out to you, and if ranting on the blogs helps with your frustration and feelings of helplessness then I say rant away, I will listen.

Maria said...

Gosh have I missed reading your blogs! Loved how larry came up with an alternative plan for vacation! I LOVE this blog madly! Well well said! Can't get over how big both of the cutest girls on the internet have grown!!!
I hope you are feeling better now,,,that the sickness has left you.Swine flu scares me with how susceptible my Ms.T. is to everything. I pray it never comes our way or your's!
I will try and come back weekly and make it a badly needed study break for me!
Hugs from Mass. x0x0

Arizona mom to eight said...

I have been blog hopping all morning, so I am not certain how I came to find yours? Maybe on Aiden's blog?

I have three daughters with Down syndrome (and 5 typical children, 4 grown sons and a teenage daughter), Meghan who was born to me, she is 8, and then Kara and Amanda, they are both 4, and adopted from Ukraine and Estonia.

Amanda was diagnosed with Autism this summer, we are still not certain if it is institutional autism, though I doubt it, we have a typical son with Aspergers, and I recognized some of the mannerisms the first day we spent with her. Amanda is a complex little girl, and has only been with us one year. We are still bonding and learning about her and she is still learning to trust us. Amanda tends to retreat to a place where no one else is, I am forever hunting her down. She will let us hold her, but her back is usually towards us. Face to face contact stresses her out, she often scratches us if we try to hug her.

She seems to want to be hugged too, it all makes me so sad.I know we have have some challeneges ahead, it would be nice to have a friend who understands.

Gary said...

You might enjoy this.

Laughter Therapy

e said...

gary who???

that's a cute website, but i have found myself estranged from my own peeps with DS as well as the general ASD population.

There are some awesome suggestions for speech, feeding, sensory problems,ABA,etc.. but really, for the most part, children with BOTH DS/ASD are a whole new type of kid.

Do introduce yourself, though...your blogger profile is blank, and mommies of kids like ours, are a little nervous around strangers.


scott said...

"Down deep, i know i did something to cause it...."

Glad I don't feel this way about my severely autistic kid. It's hard enough without a guilt trip.

As far as people's reactions, well, I finally realized that people who are mean and rude enough to judge and criticize deserve every earsplitting scream and disruption my kid can dish out, because I'd like to let fly a tantrum or two on these ignorant "normals" but of course I would be arrested.

I could care less who understands, because they never will, and a little card won't make a bit of difference. Ignore them.