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Thursday, October 29, 2009

God Chooses Mom for a Disabled Child

(Also posted previously on Facebook)

God Chooses Mom for Disabled Child

written by Erma Bombeck,

Published in the Today Newspaper Sept. 4th, 1993,

Most women become mothers by choice, some by social pressures, and a couple by habit this year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen? Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger. "Armstrong, Beth; son; patron saint, Matthew. "Forrest, Marjorie; daughter; patron saint, Cecelia. "Rudledge, Carrie; twins; patron saint.... give her Gerard. He's used to profanity." Finally, he passes a name to an angel and smiles, "Give her a handicapped child." The angel is curious. "Why this one, God? She's so happy." "Exactly," smiles God. "Could I give a handicapped child a mother who does not know laughter? That would be cruel." "But has she patience?" asks the angel. "I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it." "I watched her today. She has that feeling of self and independance. She'll have to teach the child to live in her world and that's not going to be easy." "But, Lord, I don't think she even believes in you." God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness." The angel gasps, "Selfishness? Is that a virtue?" God nods. "If she can't seperate herself from the child occasionally, she'll never survive. Yes, there is a woman I will bless with a child less then perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a `spoken word.' She will never consider a `step' ordinary. When her child says `Momma' for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations." "I will permit her to see clearly the things I see...ignorance, cruelty, prejudice... and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side." "And what about her patron saint?" asks the angel, his pen poised in midair. God smiles. "A mirror will suffice"

10 Things Every Child With Autism Wishes You Knew

I've posted this before on my Facebook, but I feel like I should post it again because it is so very true and helpful:

Borrowed from a book I own and wish everyone who knew me or my child had an opportunity to read...

10 things children with autism wish you knew.

1. I am a child with autism. I am not "autistic." My autism is one aspect of my total character. It does not define me as a person. Are you a person with thoughts, feelings and many talents, or are you just fat (overweight), myopic (wear glasses) or klutzy (uncoordinated, not good at sports)?

2. My sensory perceptions are disordered. This means the ordinary sights, sounds, smells, tastes and touches of everyday life that you may not even notice can be downright painful for me. The very environment in which I have to live often seems hostile. I may appear withdrawn or belligerent to you, but I am really just trying to defend myself. A "simple" trip to the grocery store may be hell for me. My hearing may be hyperacute. Dozens of people are talking at once. The loudspeaker booms today's special. Muzak whines from the sound system. Cash registers beep and cough. A coffee grinder is chugging. The meat cutter screeches, babies wail, carts creak, the fluorescent lighting hums. My brain can't filter all the input, and I'm in overload! My sense of smell may be highly sensitive. The fish at the meat counter isn't quite fresh, the guy standing next to us hasn't showered today, the deli is handing out sausage samples, the baby in line ahead of us has a poopy diaper, they're mopping up pickles on Aisle 3 with ammonia. ... I can't sort it all out, I'm too nauseous.

Because I am visually oriented, this may be my first sense to become overstimulated. The fluorescent light is too bright. It makes the room pulsate and hurts my eyes. Sometimes the pulsating light bounces off everything and distorts what I am seeing. The space seems to be constantly changing. There's glare from windows, moving fans on the ceiling, so many bodies in constant motion, too many items for me to be able to focus - and I may compensate with tunnel vision. All this affects my vestibular sense, and now I can't even tell where my body is in space. I may stumble, bump into things, or simply lay down to try and regroup.

3. Please remember to distinguish between won't (I choose not to) and can't (I'm not able to). Receptive and expressive language are both difficult for me. It isn't that I don't listen to instructions. It's that I can't understand you. When you call to me from across the room, this is what I hear: "*&^%$#@, Billy. #$%^*&^%$&*" Instead, come speak directly to me in plain words: "Please put your book in your desk, Billy. It's time to go to lunch." This tells me what you want me to do and what is going to happen next. Now it's much easier for me to comply.

4. I am a concrete thinker. I interpret language literally. It's very confusing for me when you say, "Hold your horses, cowboy!" when what you really mean is "Please stop running." Don't tell me something is a "piece of cake" when there is no dessert in sight and what you really mean is, "This will be easy for you to do." When you say, "It's pouring cats and dogs," I see pets coming out of a pitcher. Please just tell me, "It's raining very hard." Idioms, puns, nuances, double entendres and sarcasm are lost on me.

5. Be patient with my limited vocabulary. It's hard for me to tell you what I need when I don't know the words to describe my feelings. I may be hungry, frustrated, frightened or confused, but right now those words are beyond my ability to express. Be alert for body language, withdrawal, agitation, or other signs that something is wrong.

There's a flip side to this: I may sound like a little professor or a movie star, rattling off words or whole scripts well beyond my developmental age. These are messages I have memorized from the world around me to compensate for my language deficits, because I know I am expected to respond when spoken to. They may come from books, television or the speech of other people. It's called echolalia. I don't necessarily understand the context or the terminology I'm using, I just know it gets me off the hook for coming up with a reply.

6. Because language is so difficult for me, I am very visually oriented. Show me how to do something rather than just telling me. And please be prepared to show me many times. Lots of patient repetition helps me learn.

A visual schedule is extremely helpful as I move through my day. Like your day planner, it relieves me of the stress of having to remember what comes next, makes for smooth transitions between activities, and helps me manage my time and meet your expectations. Here's a great web site for learning more about visual schedules

7. Focus and build on what I can do rather than what I can't do. Like any other human, I can't learn in an environment where I'm constantly made to feel that I'm not good enough or that I need fixing. Trying anything new when I am almost sure to be met with criticism, however constructive, becomes something to be avoided. Look for my strengths and you'll find them. There's more than one right way to do most things.

8. Help me with social interactions. It may look like I don't want to play with the other kids on the playground, but sometimes it's just that I simply don't know how to start a conversation or enter a play situation. If you can encourage other children to invite me to join them at kickball or shooting baskets, I may be delighted to be included.

9. Try to identify what triggers my meltdowns. This is termed "the antecedent." Meltdowns, blowups, tantrums or whatever you want to call them are even more horrid for me than they are for you. They occur because one or more of my senses has gone into overload. If you can figure out why my meltdowns occur, they can be prevented.

10. If you are a family member, please LOVE ME UNCONDITIONALLY. Banish thoughts such as, "If he would just ..." and "Why can't she ... ?" You didn't fulfill every last expectation your parents had for you, and you wouldn't like being constantly reminded of it. I didn't choose to have autism. Remember that it's happening to me, not you. Without your support, my chances of successful, self-reliant adulthood are slim. With your support and guidance, the possibilities are broader than you might think. I promise you I'm worth it.

It all comes down to three words: Patience. Patience. Patience.

Work to view my autism as a different ability rather than a disability. Look past what you may see as limitations and see the GIFTS autism has given me. I may not be good at eye contact or conversation, but have you noticed I don't lie, cheat at games, tattle on my classmates, or pass judgment on other people?

You are my foundation. Think through some of those societal rules, and if they don't make sense for me, let them go. Be my advocate, be my friend, and we'll see just how far I can go.

I probably won't be the next Michael Jordan, but with my attention to fine detail and capacity for extraordinary focus, I might be the next Einstein. Or Mozart. Or Van Gogh.

They had autism too.

Tuesday, October 13, 2009

Aidan moves to a new school... or, why first year kindergarten teachers shouldn't have autistic children in their classroom...r

It's been an excruciating and stressful process, which has taken nearly a month (maybe more) to straighten out, but Aidan is now happily ensconced at his new school. Let's hope this time is more successful.

Because I registered Aidan late at Creekside Elementary (here in Limestone County), he was placed in a classroom with a FIRST YEAR TEACHER. Okay, seriously, who is this fair to? Aidan did alright at first, he made lots of friends, and came home singing songs and did his work. He adored his special ed teacher, Ms. Matsos (thank God for her, or things would have been a million times worse!), but she could only spend so much time with him, since she's got a lot of other students to tend to.

Aidan has a lot of issues with sensory overload, and I made sure that his kindergarten teacher (Ms. Hayes), Ms. Matsos, and the principal (Mr. Scott) all knew about these issues. Sounds are really his weakness, and he has to put a lot of effort into ignoring all the little noises you and I are able to filter out with no issue. I know some smells bother him, and he hasn't really told me about whether certain lights bother him, but who knows. We send his iPod to school with him everyday in case he needs time out and some different sensory input, and you'd think Ms. Hayes would learn pretty quickly when Aidan needs a chance to escape.

A couple weeks into school, they started DIBELS testing. This is basic reading skills competency for kindergartners. Aidan had been doing fine up until this point, with really very few problems. As far as I can guess, this change of schedule and routine really threw him off and the problems started.

Now anyone who's been around Aidan a lot, knows that when he's trying to ignore the world around him and focus on the task at hand (school work, TV, playing with trains, Lego's, etc.), if you touch him or speak to him, he lashes out. He just has a hard time with the sensory input. At school there are even more noises to try to filter out, and even more to focus on. Of course, kindergartners aren't great at staying out of personal space, or leaving other kids alone, and they all sit at group tables together. What does this mean for Aidan? It means that he starts hitting kids or pulling their hair or whatever reaction he feels is necessary when they break his focus or he goes into sensory overload. He had been having problems with pickup in the afternoon because it was too loud, and we changed that situation, but you can't exactly pull a kid out of the classroom every time he gets overwhelmed.

At least twice a week I was being called by the principal, or having to go the Principal's office to pick Aidan up because he had hit another student, or worse had hit his teacher. Kindergarten children should not be spending the day in ISS (in school suspension). But Aidan realized that the office was quiet, and there weren't other students there to invade his space or make irritating noises. So he continued acting out, because for him that wasn't a punishment. And it felt wrong to punish him for reacting the only way he knew how to a highly uncomfortable situation - he just doesn't have the coping skills to deal with it any other way.

Finally, Mr. Scott (the principal at Creekside) recommended that we consider placing Aidan at a different school that could better provide for his needs as a child with autism. Johnson Elementary, which is about the same distance from our house, just in a different direction, has a self-contained autism unit, with several aides to help the children one-on-one, and one of the best autism teachers in the state.

What an opportunity!

We were hesitant at first. Aidan is super-smart (highest reading level in his kindergarten class!), and very high-functioning - would these kids who were much lower-functioning make it harder for him to progress? Would he be overwhelmed by their behavior? If we didn't move him, what could we do for him?

Fortunately, Limestone County spent the majority of their stimulus money on their autism programs. In fact, they have a nationally renowned behaviorist from Auburn on retainer for the year - Dr. Babcock. He's odd, but he's very intuitive and has been working with autistic children for a very long time. We had the chance to sit down with him, as well as two of the special ed coordinators from the school board, and the autism teacher at Johnson (Ms. Enloe, who is amazing). Dr. Babcock also went over and spoke to Ms. Matsos about Aidan, and also observed him for a little while to get an idea of Aidan's behavior. Apparently, it is very rare for Dr. Babcock to recommend for a child to go to the autism unit, but he told us without a doubt that this was where Aidan belonged (heck, we asked God for a clear direction, I guess he thought he'd better make it crystal clear!). He feared that if we didn't move Aidan, he would develop a school phobia - he didn't want Aidan to feel like he had to act out to escape the discomfort of the regular classroom.

So, I took Aidan the next day to visit the classroom, with the hopes that if he liked it, we could get him enrolled the following Monday. This was the plan, and I was told by the special ed coordinator that it was clear for us to do this. We were delayed by a week because Ms. Enloe was going to be out on training, but when she returned then we'd start Aidan there and have his IEP meeting on his first day.

This is where the tangled mess that had me so stressed out really got even messier. Jeremy and I showed up Monday morning with Aidan who they took to the classroom. Ms. Matsos, Ms. Enloe, Dr. Lewis (Johnson's principal - who I don't like), and Ms. Simmons (a kindergarten teacher at Johnson) met with us. Instead of coming up with an IEP, they (Dr. Lewis and Ms. Enloe, but mostly Dr. Lewis) started back-pedaling. Oh, we didn't know about any of this, we don't have enough info to do an IEP, we don't know enough about his behavior, we didn't know this decision was final, are we sure he should be at Johnson, I thought Dr. Babcock was supposed to make a behavior plan first, that meeting wasn't official, let's step back and think about this. I went into mama bear mode. I was ready to slash some throats and take some heads. We left that day without accomplishing anything. They said he could stay the rest of that day, but should return to Creekside until further notice. The principal would attempt to contact the special ed coordinator. We had to wait until Friday after next to hear from Dr. Babcock. Who cares if we're shoving an already miserable little boy back into an uncomfortable and unproductive environment? It's convenient for us.

Thank goodness Ms. Matsos told Mr. Scott. About an hour after the disastrous meeting, my cell phone rang and it was Ms. Baccus (the special ed coordinator). She said Mr. Scott had called her and said the meeting hadn't gone well. I told her what had happened, and she confirmed that it was not THEIR decision to make, and that the decision had already been made and emails had been sent two weeks before. She said not to get upset because it would be taken care of. She called me back again and said we could go ahead and transfer Aidan from Creekside to Johnson, that he would finish out the week at Johnson, and on Thursday we'd have the IEP meeting, and she would be there to ensure that things were done properly and Aidan wasn't shuffled to the side again for the sake of bureaucracy.

So Aidan started his second week at Johnson yesterday. They've been working on handwriting, and numbers, and when he behaves for a certain amount of time he gets to go the sensory integration room. He calls it the nursery room for some reason - he loves it. It has quiet music, and dim lighting, and all kinds of interesting toys like a ball pit and a tent, and eventually a swing. He seems so much happier.

Right now they're observing his behavior, and letting him acclimate to the new school and environment. He's getting used to the new schedule and people, and then once they've gotten to know him, he'll start spending time in the regular kindergarten classroom, with an aide. Eventually, he'll spend the majority of his day in there with an aide. The plan is that next year he'll be back at Creekside and we'll try the whole kindergarten thing again. Considering he's got the maturity of a 4 year old right now, then next year he should fit right in. And you can be sure, I won't allow them to place him with an inexperienced teacher again.