Thursday, October 29, 2009
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"
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 http://www.cesa7.k12.wi.us
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
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.
Sunday, August 16, 2009
Of course he took his ipod with him per the recommendation of his special ed teacher, but surprisingly, he did not even have to use it once. At least not that I know of - and definitely not on the first day when you'd have thought he might have to. The reason we send the ipod is because when he gets frustrated, or goes into sensory overload he can put the earphones in and turn on the music and it allows him to calm down much more easily. That little ipod was a great investment!
This week he learned about red (he can spell it and sing a song about it), squares and circles ("a square is a shape with 4 equal sides" and "a circle is a shape that is round"), and how to write the number one. Of course he wouldn't talk about it at first. In fact, for the first 3-4 hours after he got home from school every day, he wouldn't talk at all - only pointing and grunting, and if I tried to get him to talk, he'd scream at me not to talk to him. But Friday night he was a little talking machine, so I guess he finally transitioned.
The only other issue we had, and I'm not sure this had anything to do with autism, was that he didn't eat his lunch the first day in the cafeteria --- the teachers let him only get chips and cookies and beans, and he didn't eat the beans. Genius, you have to tell a kindergartener what to eat. Sorry, but really? I made it clear to the teachers and Aidan that he had to have one food from each food group and eat some of everything. I guess the rest of the week went better - they didn't email me after the first day, and he wouldn't talk to me...
We'll see how next week goes!
Wednesday, August 12, 2009
* We have the right to expect our kids to be seen for who they are as individuals, not as labels or diagnoses.
* We have a right to trust our instincts about our kids and realize that experts don't always know best.
* We have a right to ignore the remarks, questions and stares and not give explanations or excuses for why our children are the way they are.
* We have a right to choose alternative therapies for our kids.
* We have a right to roll our eyes straight out of our heads when we encounter certain mothers who brag nonstop that their kids are the smartest students/best athletes ever.
* We have a right to wonder “What if…” every so often.
* We have a right to play aimlessly with our children. Not for therapeutic or educational purposes—just for fun.
* We have a right to blast Bruce Springsteen/Tom Petty/Any Rocker, down a glass of Pinot Grigio, get a pedicure, go out with the girls or do all of the aforementioned at once if that's what it takes to avoid burnout.
* We have a right to react to people’s ignorance in whatever way we feel necessary.
* We have a right to not always have our child be the poster child for his/her disability and some days be just a child.
* We have a right to go through the grieving process and realize we may never quite be "over it."
* We have the right to give our kids chores. Even better if they can learn to make breakfast in bed for us.
* We have a right to stretch the truth when we fail to do the exercises the therapist asked us to do this week because we were too darn tired or overwhelmed.
* We have a right to have yet more Pinot Grigio.
* We have a right to fire any doctor or therapist who's negative, unsupportive or who generally says suck-y things.
* We have a right to tell family and friends that everything may not be OK—at least not how they mean it, anyway.
* We have a right to hope for an empty playground so we don’t have to look into another child’s eyes and answer the question, “What’s wrong with him?”
* We have a right to bawl on the way back from the playground, the birthday party, the mall or anyplace where our children’s challenges become glaringly obvious in the face of all the other kids doing their typical-development things.
* We have the right to give our children consequences for their behavior. They may be “special” but they can still be a royal pain in the ass.
* We have a right to take a break from Googling therapies, procedures, medicine and treatments for our kids to research upcoming concerts, exotic teas or anything not related to our children’s disabilities.
* We have a right to talk about how great our kids are when people don’t get it.
* We have the right to not always behave as inspirational icons who never complain or gripe about the sometimes awful realities of raising a child with special needs.
* We have a right to expect quality services for our children not just when they’re infants, preschoolers and elementary school age, but when they’re in older grades and adults, too.
* We have a right to adequate funding for those services and to not have to kick, scream or endure a wait for them.
* We have a right to get tired of people saying, as they give that sympathy stare, "I don't know how you do it."
* We have a right to wish that sometimes things could be easier.
* We have a right to cheer like crazy anytime our children amaze us—or weep like lunatics.
* We have a right to push, push and push some more to make sure our children are treated fairly by the world.
((This is not mine, I found it on someone's blog))
Sunday, August 9, 2009
Thoughts, ideas, advice, donations?
Monday, August 3, 2009
[This article was published in the Autism Network International newsletter, Our Voice, Volume 1, Number 3, 1993. It is an outline of the presentation Jim gave at the 1993 International Conference on Autism in Toronto, and is addressed primarily to parents.]Parents often report that learning their child is autistic was the most traumatic thing that ever happened to them. Non-autistic people see autism as a great tragedy, and parents experience continuing disappointment and grief at all stages of the child's and family's life cycle.
But this grief does not stem from the child's autism in itself. It is grief over the loss of the normal child the parents had hoped and expected to have. Parents' attitudes and expectations, and the discrepancies between what parents expect of children at a particular age and their own child's actual development, cause more stress and anguish than the practical complexities of life with an autistic person.
Some amount of grief is natural as parents adjust to the fact that an event and a relationship they've been looking forward to isn't going to materialize. But this grief over a fantasized normal child needs to be separated from the parents' perceptions of the child they do have: the autistic child who needs the support of adult caretakers and who can form very meaningful relationships with those caretakers if given the opportunity. Continuing focus on the child's autism as a source of grief is damaging for both the parents and the child, and precludes the development of an accepting and authentic relationship between them. For their own sake and for the sake of their children, I urge parents to make radical changes in their perceptions of what autism means.
I invite you to look at our autism, and look at your grief, from our perspective:
Autism is not an appendage
Autism isn't something a person has, or a "shell" that a person is trapped inside. There's no normal child hidden behind the autism. Autism is a way of being. It is pervasive; it colors every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence. It is not possible to separate the autism from the person--and if it were possible, the person you'd have left would not be the same person you started with.
This is important, so take a moment to consider it: Autism is a way of being. It is not possible to separate the person from the autism.
Therefore, when parents say,
I wish my child did not have autism,what they're really saying is,
I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead.
Read that again. This is what we hear when you mourn over our existence. This is what we hear when you pray for a cure. This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces.
Autism is not an impenetrable wall
You try to relate to your autistic child, and the child doesn't respond. He doesn't see you; you can't reach her; there's no getting through. That's the hardest thing to deal with, isn't it? The only thing is, it isn't true.
Look at it again: You try to relate as parent to child, using your own understanding of normal children, your own feelings about parenthood, your own experiences and intuitions about relationships. And the child doesn't respond in any way you can recognize as being part of that system.
That does not mean the child is incapable of relating at all. It only means you're assuming a shared system, a shared understanding of signals and meanings, that the child in fact does not share. It's as if you tried to have an intimate conversation with someone who has no comprehension of your language. Of course the person won't understand what you're talking about, won't respond in the way you expect, and may well find the whole interaction confusing and unpleasant.
It takes more work to communicate with someone whose native language isn't the same as yours. And autism goes deeper than language and culture; autistic people are "foreigners" in any society. You're going to have to give up your assumptions about shared meanings. You're going to have to learn to back up to levels more basic than you've probably thought about before, to translate, and to check to make sure your translations are understood. You're going to have to give up the certainty that comes of being on your own familiar territory, of knowing you're in charge, and let your child teach you a little of her language, guide you a little way into his world.
And the outcome, if you succeed, still will not be a normal parent-child relationship. Your autistic child may learn to talk, may attend regular classes in school, may go to college, drive a car, live independently, have a career--but will never relate to you as other children relate to their parents. Or your autistic child may never speak, may graduate from a self-contained special education classroom to a sheltered activity program or a residential facility, may need lifelong full-time care and supervision--but is not completely beyond your reach. The ways we relate are different. Push for the things your expectations tell you are normal, and you'll find frustration, disappointment, resentment, maybe even rage and hatred. Approach respectfully, without preconceptions, and with openness to learning new things, and you'll find a world you could never have imagined.
Yes, that takes more work than relating to a non-autistic person. But it can be done--unless non-autistic people are far more limited than we are in their capacity to relate. We spend our entire lives doing it. Each of us who does learn to talk to you, each of us who manages to function at all in your society, each of us who manages to reach out and make a connection with you, is operating in alien territory, making contact with alien beings. We spend our entire lives doing this. And then you tell us that we can't relate.
Autism is not death
Granted, autism isn't what most parents expect or look forward to when they anticipate the arrival of a child. What they expect is a child who will be like them, who will share their world and relate to them without requiring intensive on-the-job training in alien contact. Even if their child has some disability other than autism, parents expect to be able to relate to that child on the terms that seem normal to them; and in most cases, even allowing for the limitations of various disabilities, it is possible to form the kind of bond the parents had been looking forward to.
But not when the child is autistic. Much of the grieving parents do is over the non-occurrence of the expected relationship with an expected normal child. This grief is very real, and it needs to be expected and worked through so people can get on with their lives--
but it has nothing to do with autism.
What it comes down to is that you expected something that was tremendously important to you, and you looked forward to it with great joy and excitement, and maybe for a while you thought you actually had it--and then, perhaps gradually, perhaps abruptly, you had to recognize that the thing you looked forward to hasn't happened. It isn't going to happen. No matter how many other, normal children you have, nothing will change the fact that this time, the child you waited and hoped and planned and dreamed for didn't arrive.
This is the same thing that parents experience when a child is stillborn, or when they have their baby to hold for a short time, only to have it die in infancy. It isn't about autism, it's about shattered expectations. I suggest that the best place to address these issues is not in organizations devoted to autism, but in parental bereavement counseling and support groups. In those settings parents learn to come to terms with their loss--not to forget about it, but to let it be in the past, where the grief doesn't hit them in the face every waking moment of their lives. They learn to accept that their child is gone, forever, and won't be coming back. Most importantly, they learn not to take out their grief for the lost child on their surviving children. This is of critical importance when one of those surviving children arrived at t time the child being mourned for died.
You didn't lose a child to autism. You lost a child because the child you waited for never came into existence. That isn't the fault of the autistic child who does exist, and it shouldn't be our burden. We need and deserve families who can see us and value us for ourselves, not families whose vision of us is obscured by the ghosts of children who never lived. Grieve if you must, for your own lost dreams. But don't mourn for us. We are alive. We are real. And we're here waiting for you.
This is what I think autism societies should be about: not mourning for what never was, but exploration of what is. We need you. We need your help and your understanding. Your world is not very open to us, and we won't make it without your strong support. Yes, there is tragedy that comes with autism: not because of what we are, but because of the things that happen to us. Be sad about that, if you want to be sad about something. Better than being sad about it, though, get mad about it--and then do something about it. The tragedy is not that we're here, but that your world has no place for us to be. How can it be otherwise, as long as our own parents are still grieving over having brought us into the world?
Take a look at your autistic child sometime, and take a moment to tell yourself who that child is not. Think to yourself: "This is not my child that I expected and planned for. This is not the child I waited for through all those months of pregnancy and all those hours of labor. This is not the child I made all those plans to share all those experiences with. That child never came. This is not that child." Then go do whatever grieving you have to do--away from the autistic child--and start learning to let go.
After you've started that letting go, come back and look at your autistic child again, and say to yourself: "This is not my child that I expected and planned for. This is an alien child who landed in my life by accident. I don't know who this child is or what it will become. But I know it's a child, stranded in an alien world, without parents of its own kind to care for it. It needs someone to care for it, to teach it, to interpret and to advocate for it. And because this alien child happened to drop into my life, that job is mine if I want it."
If that prospect excites you, then come join us, in strength and determination, in hope and in joy. The adventure of a lifetime is ahead of you.
Sunday, August 2, 2009
Today, Aidan tore apart a cardboard box from a giant wall map we bought for him. He stuck the pieces on his arms, put his Optimus Prime mask on his face, and walked outside. "I'm a superhero," he told us as he ran out into the backyard. This time last year that would never have happened. Six months ago, that would have been unheard of. But today he made up the most awesome make believe superhero, and I could have jumped up and down with joy.
He still prefers to copy whatever movie he's currently watching for his play - the last few days it has been a noisy version of Cars. Right now his challenge to overcome is how to deal with the frustration that occurs when you have a plan for your imaginary story and it doesn't work. He will literally scream as though in pain when something fails to do what he had intended. Also, interrupting or even speaking to him while he's making believe can be hazardous to one's health. It's as if once he makes it into his own world, anyone who happens to speak to him is an intruder.
The leaps and bounds are amazing. I'm so proud of him, and I can't wait to see what he accomplishes next!
Saturday, August 1, 2009
Alabama still doesn't require insurance companies to cover treatments and therapies necessary to assist children with PDD-NOS or other autism spectrum disorders. If you want to help, you can contact your congressman (or senator or representative or whatever) and tell them how important it is to you that the children you know with autism be able to have equal coverage under insurance. You are also welcome to donate to a fund I'll be starting soon for Aidan to be able to try to get him into as many therapies as possible while they'll still be beneficial to him. This article is very informative:
Do you know Jack (and Jill)? State mandates coverage for autism
At first, Jack's parents thought their little Lego-building genius had a hearing problem. So, they brought him to audiologists. The doctors plopped headphones on the toddler, turned on a set of mechanical clowns who shook tambourines, played drums and clapped.
The clowns resembled the "It's A Small World" dolls at Disney World. Jack tilted his head in the direction of the sound, but his eyes often looked passed them -- wandering to the scenery behind the clowns, to a seam in the wall or to some colorful detail, the zigzag stitching in their costume.
The good news was that Jack did not have a hearing problem. It was something else. Something that took another two years and other specialists to diagnose -- pervasive developmental disorder, not-otherwise specified. PDD-NOS.
The diagnosis from the Yale Child Study Center when Jack was only 4 went down hard on his folks. It was harder to accept a decade later with their feisty daughter.
In a note to her parents, the day care informed the couple that Jill "is always the last one anyone picks" when it comes to choosing teams. And that Jill "is oblivious" to other people's feelings, holds crayons with an awkward grip and has trouble forming letters, coloring pictures within the lines, even when she tries.
The evaluations of their children set Jack and Jill's folks back $9,200 and the therapy with a speech pathologist twice a week for seven years cost another $70,000.
Their insurance refused to pay a dime. The policy excluded autism services.
This couple was able to afford these services out-of-pocket. Having an evaluation early allowed them to gain special education services for both children.
Countless others aren't so lucky.
When families can't pay for these evaluations, children start out behind the eight-ball, and as they grow older, they drop further behind their peers because either their disabilities or the severity of them don't attract the attention of educators at the earliest point where offering them services will have the most impact.
The picture however for kids with autism spectrum disorders is about to brighten somewhat. Connecticut is joining a host of other states that mandate group insurance plans pay for autism spectrum disorder evaluations, prescriptions, physical, speech and occupational therapy.
That shouldn't supplant a school's obligation to provide those services to students. But it's possible that given the tight budgets that everyone, including school systems, operate on, it's conceivable that it may. Schools might balk at continuing to pay for these services.
"While there are some very on top of it school systems when it comes to autism, that is not the norm," says Hal Gibber, executive director of Favor Inc., an advocacy organization for people with behavioral, developmental and mental health issues.
"Most of them will want to do as little as possible until somebody requires them to do more," Giber says.
And that shouldn't happen here when this law has the potential of making the difference between giving kids with autism spectrum disorders the tools to succeed in the neuro-typical world. "Schools often ask the question what is 'educational'?
They are mandated to provide for children's needs in so far they these needs are educational," says Dr. Ami Klin, director of Yale Child Study Center's Autism Program.
"For children with autism spectrum disorders, we've been arguing -- and many school districts agree -- that education is more than reading, writing and mathematics. It's a child's ability to succeed in aspects of daily living -- to navigate social interactions, communications and move through and engage in everyday life in their community."
Making an autism diagnosis is tricky -- even for the trained medical professionals. At Yale Child Study Center, teams of neurologists, psychiatrists and speech pathologists meet with youngsters for two days straight and ask parents, teachers and caregivers to complete a two-inch thick questionnaire, surveying a child's development, medical history, academic and social interactions.
It takes hours for parents to complete, and even longer for Yale to analyze.
These days, Jack sometimes makes honor roll at his high school. He works hard for every A or B he earns. The only subjects that come easy are algebra and calculus because those are subjects where there is no gray to Jack. Something is right or wrong. And he doesn't have to read his teachers' faces or his fellow students for the non-verbal cues, like a raised eyebrow, a smile or a grimace.
At home, Jack's nickname is "The Capitalist," owing to his ability to negotiate high baby-sitting fees, impose an early return surcharge and devise novel, legitimate ways of making money.
For her part, Jill, a fifth-grader, is reading the fifth Harry Potter book. When she meets somebody new or goes on a trip, her parents have learned to "rehearse" what she can expect to see or do. Consequently, they repeat themselves a lot. The upshot is that eases anxiety all around. And it gives Jill ideas for conversations.
MariAn Gail Brown, a columnist for the Connecticut Post, can be reached at firstname.lastname@example.org
Thursday, July 30, 2009
This perfectly describes the journey our wonderful children with autism adventure through - and we get to travel the road with them. Thanks Dr. Seuss!
Oh, the Places You'll Go!
Today is your day.
You're off to Great Places!
You're off and away!
You have brains in your head.
You have feet in your shoes
You can steer yourself
any direction you choose.
You're on your own. And you know what you know.
And YOU are the guy who'll decide where to go.
You'll look up and down streets. Look 'em over with care.
About some you will say, "I don't choose to go there."
With your head full of brains and your shoes full of feet,
you're too smart to go down any not-so-good street.
And you may not find any
you'll want to go down.
In that case, of course,
you'll head straight out of town.
It's opener there
in the wide open air.
Out there things can happen
and frequently do
to people as brainy
and footsy as you.
And when things start to happen,
don't worry. Don't stew.
Just go right along.
You'll start happening too.
THE PLACES YOU'LL GO!
You'll be on your way up!
You'll be seeing great sights!
You'll join the high fliers
who soar to high heights.
You won't lag behind, because you'll have the speed.
You'll pass the whole gang and you'll soon take the lead.
Wherever you fly, you'll be the best of the best.
Wherever you go, you will top all the rest.
Except when you don' t
Because, sometimes, you won't.
I'm sorry to say so
but, sadly, it's true
can happen to you.
You can get all hung up
in a prickle-ly perch.
And your gang will fly on.
You'll be left in a Lurch.
You'll come down from the Lurch
with an unpleasant bump.
And the chances are, then,
that you'll be in a Slump.
And when you're in a Slump,
you're not in for much fun.
is not easily done.
You will come to a place where the streets are not marked.
Some windows are lighted. But mostly they're darked.
A place you could sprain both you elbow and chin!
Do you dare to stay out? Do you dare to go in?
How much can you lose? How much can you win?
And IF you go in, should you turn left or right...
or right-and-three-quarters? Or, maybe, not quite?
Or go around back and sneak in from behind?
Simple it's not, I'm afraid you will find,
for a mind-maker-upper to make up his mind.
You can get so confused
that you'll start in to race
down long wiggled roads at a break-necking pace
and grind on for miles across weirdish wild space,
headed, I fear, toward a most useless place.
The Waiting Place...
...for people just waiting.
Waiting for a train to go
or a bus to come, or a plane to go
or the mail to come, or the rain to go
or the phone to ring, or the snow to snow
or waiting around for a Yes or a No
or waiting for their hair to grow.
Everyone is just waiting.
Waiting for the fish to bite
or waiting for wind to fly a kite
or waiting around for Friday night
or waiting, perhaps, for their Uncle Jake
or a pot to boil, or a Better Break
or a sting of pearls, or a pair of pants
or a wig with curls, or Another Chance.
Everyone is just waiting.
That's not for you!
Somehow you'll escape
all that waiting and staying.
You'll find the bright places
where Boom Bands are playing.
With banner flip-flapping,
once more you'll ride high!
Ready for anything under the sky.
Ready because you're that kind of a guy!
Oh, the places you'll go! There is fun to be done!
There are points to be scored. there are games to be won.
And the magical things you can do with that ball
will make you the winning-est winner of all.
Fame! You'll be famous as famous can be,
with the whole wide world watching you win on TV.
Except when they don't.
Because, sometimes, they won't.
I'm afraid that some times
you'll play lonely games too.
Games you can't win
'cause you'll play against you.
Whether you like it or not,
Alone will be something
you'll be quite a lot.
And when you're alone, there's a very good chance
you'll meet things that scare you right out of your pants.
There are some, down the road between hither and yon,
that can scare you so much you won't want to go on.
But on you will go
though the weather be foul
On you will go
though your enemies prowl
On you will go
though the Hakken-Kraks howl
Onward up many
a frightening creek,
though your arms may get sore
and your sneakers may leak.
On and on you will hike
and I know you'll hike far
and face up to your problems
whatever they are.
You'll get mixed up, of course,
as you already know.
You'll get mixed up
with many strange birds as you go.
So be sure when you step.
Step with care and great tact
and remember that Life's
a Great Balancing Act.
Just never forget to be dexterous and deft.
And never mix up your right foot with your left.
And will you succeed?
Yes! You will, indeed!
(98 and 3 / 4 percent guaranteed.)
KID, YOU'LL MOVE MOUNTAINS!
be your name Buxbaum or Bixby or Bray
or Mordecai Ali Van Allen O'Shea,
you're off to Great Places!
Today is your day!
Your mountain is waiting.
So...get on your way!
Wednesday, July 29, 2009
Tuesday, July 28, 2009
Sunday afternoon Aidan called (via Maw-Maw) because he had crashed his bike and needed his mommy. I talked to him for a little while and he told me what had happened and to come home and I explained that Jeremy and I had been at the aquarium and wouldn't be home for a few more days because we still wanted to go to the zoo. He wanted to go too, but I explained he couldn't because we were far away and only mommy and Jeremy were going this time, but he could go next time.
Monday Maw-Maw said he was really missing me. She said he asked where I was, and she laughed and said he knew I was in Atlanta. Then he corrected his question, pointed at a picture of me and asked if that was Mommy. Then another of me in high school (Maw-Maw confirmed it was me), then one when I was around 2 (again Maw-Maw confirmed), lastly one of me as a newborn (which Maw-Maw confirmed). Then he said okay and walked away. As if he wanted to confirm I was real. Strange how his little mind works.
One thing I really noticed through having so much phone conversation with him (I called and talked to him this afternoon when we headed home) is that he is SOOO much easier to understand now than he was not even a year ago. I think it's mostly because we spend so much time and effort talking with him - not just talking at him, but forcing him to have a conversation with us, and correcting him when he says something wrong, or asking for clarification when he says something we don't understand. I'm so proud of the progress he's made.
And it was great to have a vacation too. Now I just need a vacation from my vacation...
Saturday, July 25, 2009
- Listen - without answers or solutions - just be there.
- Provide meals, especially while the parents grieve, process, and plan.
- Take the child or children often in order to give the parents respite and the kids a good dose of what only a grandparent (or aunt, uncle, or best friend's mommy, or mommy's best friend) has to offer.
- Learn to cook new food if there is a special diet involved, and always have plenty of "legal" food on hand.
- Be supportive. A parent is going to do anything they can to help their child grow and develop. You may not agree, but be patient and let the parents sort it all out. Take pictures at therapeutic horseback riding lessons and join in the Floortime interactions.
- Get online. Join an autism community and get to know other families and other grandparents.
- Put on your sneakers and sign up for that neighborhood walk-a-thon. Raising funds and awareness is just another way to love your family well.
- Keep your opinions to yourself (unless solicited*). Autism isn't caused by too much television or a broccoli deficiency. Children are not disciplined out of autism, and beneficial therapies involve more than "a little tough love" or a spank on the bum. Those kinds of comments will only build walls between you and your children.
- Carry over in your home, as best as possible, the treatments that the parents are using at home. For example, if the parents are ignoring a behavior rather than bringing attention to it, do the same. A consistent environment enhances good teaching.
- Ask what you can do that will help. Sometimes the answer will be "Just give us some space." Sometimes the answer might be "Please come soon." Be respectful of the parents as they ride the waves of emotion that come with such a diagnosis.
- Be available to accompany the parents on doctor visits and other such meetings. Children are often required to be at these meetings, but their attention span is short and having you there to entertain and interact with them will give the parents the ability and freedom to attend to the professional without distraction.
- Allow yourself to love in a new and bigger way. This journey may shake your family to the core, but there is a rare joy and a rich reward when you love someone with autism with all your heart.
Friday, July 24, 2009
What did surprise me was his enjoyment of the Mars ride. Again his tools helped him. Mom told him how it would sound and feel (to the best of her ability). She let him talk to some older kids who had already ridden it, and they assured him it was fun and were nice enough to let him go ahead of them so he could see the ride from the outside. It's one of those where you get in and the box just rocks around a whole lot but you have a big screen inside that makes you feel like a whole lot more is going on - sort of virtual reality I guess. Then the facilitator showed Aidan where the button was to stop the ride if he needed to get off (or anyone else did for that matter) and the ride started. At first he might have been a little scared, but he had a blast overall. And I'm glad.
This weekend he gets to stay with Maw-Maw and Paw-Paw while Jeremy and I go to Atlanta for a much needed vacation. He'll be staying with them for 3 nights. I know he'll be fine - and so will I! See you when we get back!