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 today.....it'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 it..it 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 this..kids??? 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 amputation....so 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.

A new title, a new life, and a rainy day blog

Yea, I've been off awhile...partly because we've been so busy with Ally's graduation/end of school stuff/and acceptance. I'll talk about the fun in a future posting...it's just been a blur in my life as of late...for now? we'll focus on one topic:

Acceptance


Molly Kate now has a definite diagnosis of being on the Austism Spectrum. There, I've typed it for the world to see...My skunky, funny girl is Autistic.


tears...*sniff*



She went to Kindergarden twice...the first time? FABULOUS!! Everyone loved her, she was gaining a vocabulary, and was elected princess candidate of the spring festival...purely a popularity election. She was the only one on stage to engage the audience in the Wonder of Molly Kate, bowing, throwing kisses and inviting applause and adorable admiration. The pinacle which spoke of the future, and just how much of a "poster child" for Down Syndrome she would become. No need to fear...I'm just like YOU!!






Year two? things started to change....her circle of friends started dwindling to 1 or 2...she had previously dropped the signs when she verbalized the word...but now she was dropping the words, too...and she became more obsessive/compulsive.....playing only with toys that would stack well...then forgoing toys altogether for better stacking utinsels like paper plates, spoons, and oreo cookies.


denial



For 2 years i watched the changes...they were also noticed by teachers and tagged as a possible "A word" in her IEPs, (still not ready to accept the possiblity) and then? i started talking to other moms, and visiting other websites.... Moms with kids on the spectrum.



I'm Angry



I was so careful with her innoculations, only to find out i could have separated the MMR and taken it in 3 different doses....knowledged gained too late. I'm not saying it WAS the MMR, I'm saying i don't feel like i was given enough knowledge about all the alternatives at the time of innoculation....(hers was definitely mercury free) and we still don't know why this disorder is attacking our children at the current estimates of 1 in 150.

Since she has Down Syndrome and the majority of physicians don't believe that our children can have Autism (they think it more of a level of the DS)so I too kept dragging my feet. It's taken me two years to grasp the idea and call in the experts...and the experts have come and filmed an evaluation, studied it for 2 months...and sent us the diagnosis.

She is mildly autistic by their standards...but still...another diagnosis, and this one packing SO MUCH MORE OF A PUNCH than the DS did....I so worry about "losing" her...her spitfire...her sassy...her demonstrative love......this diagnosis has just knocked me for a LOOP!


I'm slowly getting on board. Judevine has promised parent training...support...playdates...respite...horse & music therapy and of course we will persue any and all opportunities for her as always


but.... (sorrow)



It still leaves me feeling lost. She's different from her peers, now (friends with down syndrome) and we again find ourselves in the limbo world of parenting. Time to start all over I guess, and accept it...support it...learn it..fight for her and her place in this world ....and advocate.





soon

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Happy Memorial Day sounds like such an oxymoron. Thank you! more appropriate.

Thank you to my dad and uncles who fought in the big one, WWII....thanks to all of you from my generation who fought in Nam, and didn't get the thanx when you came home.....and as our own 1138th prepares to leave for that horrible place, THANK YOU and prayers for our servicemen and women currently serving in this lastest conflict.


We especially honor and remember my Father in Law, Glen Wilson, who left us too early at the hands of Altzheimers, after surviving the Germans.

After fighting in Germany, he came home and devoted his life to his 5 children and wife... and the Missouri State Patrol for 33 years...

always the public servent...and the bar to reach for. We miss you, pops

lightning, assessments, and Aubrey Jo

I started this earlier, but lightning crashed outside, causing Lucifer the Cat to jump from outside on the deck, to inside on the couch in one flying leap....and then the rains came. Hard rains, knocking out satellite computer and Oswald on television (OHHHHHHH NOOOOOOOOOOO) We're dodging the tornadoes up north (knock on wood) and just getting some violent rain storms that are short in duration.

Spring is FINALLY here, and the grass seems universally greener after a 10 minute monsoon. YAY! IT SMELLS SO GOOD!! My yellow daffodills are opening, and there are buds on everything else.

We are celebrating but tired here...miss Aubrey Jo has come to rock our world for the weekend. She's very comfortable at grammy's, but wouldn't sleep anywhere but WITH grammy. We snuggled on the couch all night...she stirred a couple of times, but with a few pats on the diaper, she'd drift right back off. Being acutely aware of her new found gymnastic abilities, and the speed in which she can pull them off...grammy didn't sleep too soundly.

She has changed so much!! Dang the ice storms!! I last saw her as an infant, and she returns 4 weeks later as a rug rat!

She is a dancing baby, imitates sounds i make,patty cakes, signs daddy and more, laughs, pulls ups and walks around cruising, stands independently for a few seconds..and can FLY on her hands and knees!!

She will make the "scrunch face" atcha:








WHEN DID THIS HAPPEN!! She's still quite small, making her antics even funnier as she is now the 'walking infant'



and ohhhhhhhhhhhh she loves her food...in fact, if she hears someone in the kitchen, or spoons rattling, or cupboard doors being opened?? she is ON IT! LOOK OUT MOLLY...she's diving in for your fries!!



Also? she is quite tasty



She came with a packNplay, but currently molly is in it, and against all of bree's parent's warnings, SHE is not.... but has run of the house (bathroom doors closed) and she's loving it! She runs down to see grampa in the radio room...chases the cats, and loveeeeeees sarge the german shep. He just makes her squeal! There is no taking your eye off of her...not for one second. I think also, i may rename her "woomba" as even though i've vacuumed 37 times, she still is finding things to pick up and put in her mouth. Yes, Gabe, the dog food dish is secured on the back porch!




I am so amazed by her sheer sharpness. She doesn't miss a movement, she doesn't miss a sound. Her eyes flit and scan and move her to the next escapade. I don't think I'm seeing her in such amazement because molly was so laid back as an infant, either....I think I'm amazed....because she is amazing. I see great things happening for this curious little girl.



We did have molly's assessment Friday...to see if she's on the Autism Spectrum. The interviewer came while moll was outside playing, so we had some time to set up before calling her in. The first thing molly does is run over and give her a big hug! BLASPHEME!! SHE NEVER DOES THIS! lmao...i believe molly thought the lady was shauna, as she was young and had beautiful hair!

She filmed the eval while running thru several tests. After she left, i realized i had answered some questions wrong...YES, she does repeat words consistantly...CAT CAT CAT CAT ...should i email her? Why i am so worried about things that i forgot to say....do i WANT her to be Autistic?

Nope

Thanks to Maria, who is dealing with many of the things we are....i want answers. In my heart i would rather not have the label, but i WOULD like some answers. Those answers won't happen for a month or so. It's a long process. I just know there is a magic key to unlocking molly's intellegence, as there is no doubt that it is there, and whether or not the key lies in a diagnosis on the spectrum, or someplace else...we will keep working until we find it. Molly has many contributions of her own to make.

I will end with my frustration/chuckle of the week.

The school sends molly home all the time. She is "out of sorts" or "pushing" or "has an ear infection" (she had a bad case of wax)" "has pink eye" "maybe the flu" and it's just CONSTANT!!!.... to the point that I was beginning to think that maybe molly is just too hard to handle, and it's easier to send her home than to deal with her. And what am i to do? Tell them she doesn't have an ear infections, or take her to two dr's to make sure. Tell them NO, we will not pick her up no matter what YOU think????


Today I opened a warning notice from the school. She's missing too much!

UGH!!

Off i go...the woomba is heading for my bedroom, which is referred to as the 'toy room' by the sarge anyway....too much FUN! OH LOOK, she's found mama and dadda...and is signing with thumb on her head...and saying mum mum mum (shhhhhhhhh don't tell ally)



I'll leave you with 4 generations (with one crooked little finger) of hands,
and hopes that spring EXPLODES in your area..the way it has ours...Don't forget to spring those clocks ahead, either!