Wednesday, December 1, 2010

A Story from School

Here's the note Jack's teacher sent home today:

"Yesterday, Jack's friend got into trouble and was sent to time out. While there, he said, 'I'm a loser!' This really concerned Jack. He went over, sat next to his friend, and told him, 'It's okay; you're not a loser.' He was so sympathetic toward his friend! Then, he told his friend, 'You just have to believe!' Then he started talking about Santa. Too funny! He definitely talked his friend out of his funk! What a great helper!"

How sweet is this!

He's been riding the regular bus with no problems, so we're modifying his IEP. I'm still nervous about the bus, but alas, mommies should not be too overprotective. At least, that's what I keep telling myself.

Wednesday, October 20, 2010

The Bus

Riding the bus. I always thought riding the bus to school was fun. I missed it when, in seventh grade, I transferred to a private school that didn't have bussing. Who would have thought I'd be so concerned about my own boys riding the bus? Not me.

Yet Nick had issues on the bus, particularly in second grade. He was bullied and picked on, and he is, shall we say, reactionary. He couldn't ignore what was happening...the quickest way to end most bullying of the type he experienced. Because he always reacted (just like the bullies wanted!), the bullies kept at him.

That whole issue eventually got resolved after I talked to parents and the principal intervened, and now Nick is a big kid on the bus, which carries first through fifth graders. He handles the commute quite well, and it never occurred to me that he wouldn't get it all straightened out (with a little help). But when it came to putting Jack on that same bus, I balked. Big time.

Nick isn't autistic. Jack is. He's different. He's also sweet and sunny and friendly and concerned about little kids. I didn't want him getting picked on even though I really don't think he would notice or recognize sarcasm. Meanness he would recognize. And I wanted to protect him from that.

Our school has transported him on the "special" bus, which has an aide on board to help with the children. I liked that another adult was present to keep an eye on things while the driver kept her eyes on the road. It felt safer to me.

But. But. But.

The reality is that Jack is very high functioning. VERY high functioning. Compared to last April, when I made the decision to keep him on the little bus, he's not even the same kid. His autism specialist is pulling his one-on-one aide from music and gym because he doesn't need aides in those classes anymore. Last year, he could barely stand 20 minutes in the regular classroom, and this year he spends the bulk of his day there. His verbal communication skills have exploded (though receptive language is still a struggle for him). He really doesn't need the little bus anymore.

So we're moving him to Nick's bus. God, I get a pit in my stomach just typing that.

I've never thought of myself as a hovering parent. I never stood right under my kids on the playground as they tried new things. I stood back, let them get into trouble. I let them learn to get themselves out of trouble, too. But we all have lines we draw in the sand, issues that we just can't be rational or logical about. Here's my issue: the bus.

I'm stepping back, letting Jack into that environment that can be so negative. Just like Nick, with a little help, he can handle it. It will all turn out okay.

I'm scared, but I'm doing it. No doubt, it will be harder on me than on him. I read a lot about parents of kids on the spectrum holding back progress because they are over-protective. I don't want to hold Jack back.

Where are your lines in the sand? What are your issues that push you to a protectiveness you never thought you'd experience as a parent?

Thursday, September 2, 2010

Growing Social Awareness

Jack's first week of school was wonderful but, not surprisingly, he's showing some signs of stress. In the regular class, he has started asking for "quiet time" in the day, and they give him a two-minute break to read a book without having to pay attention to the teacher or interact in the class.

Have I mentioned lately how much I love this school district? Well, I do!

Tuesday, Jack had to go to speech therapy at Children's at 5:00. I gave him total down-time when he got off the bus, so he watched a movie and stimmed for almost an hour before we left for therapy. I kept him focused on the drive there in an attempt to get him back out of his private world. When he came out from his session with Ms. Debbie, she told me he had a horrible time focusing. He asked her not to tell me that he'd not done a good job, though both Debbie and I totally understand why he would have this problem at 5:00 PM on the seventh day of a new and challenging school year.

When Jack and I got in the car, he said, "Mommy, my brain wasn't working right today. Are you disappointed in me?" This BROKE MY HEART!!!! I explained that we all have bad days when our brains don't work very well, and that it's okay as long as he did his best. "Well, I did my best, but it wasn't very good," he said. Then he asked, "Was Ms. Debbie disappointed in me?"

As heartbreaking as this is, it's also a very good sign of growing social awareness. Jack is finally realizing that his actions affect other people...or at least finally able to verbalize his awareness. That is HUGE for a child with autism. In reading books and blogs by adults living with autism, I've been struck by how hard it is for them to understand why anyone else would care what they do or say. They don't want to hurt anyone and are hurt and confused when they realize they have.

That Jack's brain is capable of this sort of awareness at 8 years old gives me hope that he'll be able to have more appropriate empathy and social awareness as he matures. It also gives me hope that motivating him to do his work will get easier as he seeks to please the grown-ups in a more typical way. We shall see how far he can go, but for now, I'm all about teaching him that his best is quite good enough for matter what it is.

What signs of social awareness have you seen in your child with autism? How did you feel about those changes or the lack thereof?

Thursday, August 26, 2010

Back to School and the Big Picture

Wow, this summer was a blur. Now that school is back in session, I feel like things can finally get back to normal, whatever normal is!

There's a part of the Individualized Education Program (IEP) form that asks what general educational goals parents have for their children. The first few IEP meetings I attended, the question stumped me. It's a BIG PICTURE question, and most of my thoughts going into an IEP are little picture details. By now, however, I've been to so many IEP meetings, I know it's coming and plan an answer accordingly.

It's a good question because we mommies and daddies of children on the spectrum are often focused on the little picture. We deal with the daily tantrums, fights to get our kids to eat healthy food, stimming (OHMYGOD the stimming!), homework, therapy, routines and breaks in routine, the struggle to bring our children out of their own private world and into the public world of social interaction.

Back-to-school time is as good as an IEP meeting for reviewing the BIG PICTURE of education. For Jack, this means he's spending far more time in a regular classroom with a full-time aide and far less time in his TEACCH classroom. One of our long-term general educational goals for Jack is for him eventually to be mainstreamed in regular classes without an aide. This may or may not be reasonable for Jack, but we're aiming high and hoping he gets there. As far as the autism spectrum goes, Jack is very high functioning, but just how funtioning he'll be in the future is, of course, a mystery.

We're a LONG way from that level of independence, but second grade marks at least an attempt to move further down that road. I'm jubilant and terrified at the same time. In the very early days after Jack was diagnosed, I didn't even want to think about the big picture of the future. It seemed too uncertain and scary and totally out of my control. Now, I've accepted that it is most definitely out of my control, which perversely makes it much easier for me to move forward and make decisions and take action with hope that it will all turn out okay in the end.

What are your BIG PICTURE educational goals for your child with autism? Do you aim high and hope for the best or keep focused more on short-term progress because, frankly, the big picture is just too scary to contemplate? How is your back-to-school experience going this year?

Saturday, July 31, 2010

#39 New Food

Most nights, Jack eats an Oscar Meyer cheese dog and kraft mac and cheese. Last night, I accidentally grabbed a box of shells and cheese instead of mac and cheese and made it for Jack's dinner. I tried to get him to eat just a bite of the differently shaped pasta...and he would not. So I told him he would not get to watch a movie the next day until he had taken a bite of the shells and cheese.

I'm the meanest mommy EVER.

He refused the shells last night, woke up this morning, and wanted to watch a movie. I said he couldn't until he ate a bite of the shells and cheese. Much screaming and whining ensued, until finally the desire to watch a movie overcame the fear of TASTING SOMETHING NEW!

He counted down to the bite, took it, and gagged. He chewed, swallowed, gagged again, and asked for a juice box. After washing the taste out of his mouth, he said, "It looks like it was going to throw me up."

But he did it. By golly, he did it!

What do you do to encourage your child on the spectrum to broaden his/her taste horizons?

Monday, July 19, 2010

#38 Insight

One thing George and I constantly wonder is this: how much does Jack actually understand about the world? Sometimes, he seems so disengaged and/or clueless, and other times, he shows remarkable understanding.

When we were saying goodbye to our golden retriever, just before George took him to the vet to be euthanized, Jack and I stood at the back of the car, petting Hoover for the last time. Jack couldn't understand why we were all so sad. "I'm not going to be sad!" he said.

Then, he told me, "Mommy, when Daddy said Hoover was sick and was going to die, I got my wand and pointed it at Hoover and said, 'Brakiarm emendo!' [a spell from Harry Potter]. I did it over and over again. But it didn't work." He paused, then added, "I want a wand that works."

So do I, Jack.

When I reminded him that wands are make-believe, he said, "I know." But does he?

Things like this make me realize I too often underestimate how much Jack understands. Today's question, then, is this: How do you balance your own perception of your child's/student's/patient's understanding to keep from selling them short or giving them too much credit?

Not sure how you can answer this, but it seems to me it's an ongoing process. I'm curious to know how other parents/teachers/therapists/doctors feel about it.

Friday, June 11, 2010

#37 A Fun Question

Let's face it, a lot of life related to autism stinks, but a lot of it is really funny, too. I know one mother of an autistic boy who had to duct tape the peanut butter jar. On the one hand, this is sad and unbelievably frustrating, but on the other, it's absolutely hysterically funny. She chooses to look at it as hysterically funny and one more adventure in this strange journey autism takes us on.

Jack brings an amazing amount of laughter to our lives every single day. His little one-liners slay us, as does his literal take on language. We're lucky that he's so verbal and communicative when so many people with autism are not able or even driven to communicate. Sometimes, Jack will express something oddly ("Hoover, you look cute in your face."). Sometimes, he does and says funny things to get his own way. Here's an exerpt from an email his teacher sent me recently:

"I took [Jack] and the other students up with $1 to spend for business day. He ended up getting watermelon. On the way out he noticed a brownie with BLUE icing and really wanted it. He literally went up to the girl selling them and batting his eyes (I am NOT making this up!) said "You know blue is my favorite color and I LOVE brownies, but I have no money." Well....who can resist that, she gave him one for free. I told Jack that his charming personality will not always get him free things in life. Of course he had no idea what I was talking about! I'm going to miss him this summer!"

Sometimes, it's his tone of voice, which I can't really convey in writing, that elicits our giggles.

So today's question is this: What has your child with autism done lately to make you laugh?

Wednesday, May 12, 2010

#36 Plans for Summer

As we approach summer break in the northern hemisphere, I'm wondering what y'all are planning for your children's summer activities.

Our plans for Jack are a bit up in the air. He'll continue gymnastics (it's keeping him out of PT) and his regular therapy, and he'll attend extended school year. His intervention specialist is sending home summer work for him, which will take a few minutes every day. Beyond that, I have nothing planned but am looking at VBS and Ranger Camp as short-term activities.

So, what are your plans for summer for you children?

Tuesday, April 27, 2010

Jack and Hoover

Please click over to my other blog--Questioning my Intelligence--for a little update on Jack and Hoover, our dog who is dying of cancer.

Thanks to all of you who commented on the earlier question about autism and the death of a pet. Hoover is hanging in there, but he's definitely declining as the tumor grows.

Tuesday, April 20, 2010

#35 DSM-5

The proposed diagnostic criteria for Autism Spectrum Disorder were posted online weeks ago. What do you think about the new criteria? Strenghths? Shortcomings? How does your own child measure up to the new criteria?

My initial feelings are pretty positive, simply because it is so much less complicated than before. Jack would definitely qualify for an ASD diagnosis under these criteria, and I think more children who are higher functioning yet clearly disabled would qualify more easily. Eliminating the subcategory of PDD-NOS will (hopefully) help children on the milder end of the spectrum qualify for services and insurance when they have been excluded in the past. Currently, some parts of the country provide services to children diagnosed with Autism proper but not to children with a PDD-NOS diagnosis. Plus, providing more services to the higher-functioning kids will probably have a ripple effect of helping them be more funtional and independent as they grow up and pay off in the long run.

But then, I'm always looking on the positive side and have deliberately waited until the media furor (there was one, I'm sure) over the proposed criteria died down. I plan on googling the issue in the next few days, and would love to hear your take on it first. What shortcomings do you see in the new criteria--especially as they relate to your child, students, or patients--that I'm not considering?

Saturday, April 3, 2010

#34 Medication

At Jack's developmental pediatric appointment last week, we opened discussion about medication for attention. Jack's therapists and teachers all agree that his short attention span and easy distractability are starting to get in the way of learning. No one is overly concerned yet, so we're starting the discussion now so neither George nor I freak out in the fall if it becomes a necessity. We've never liked the idea of medication, but then, there's a lot we've had to face that we didn't like in the last four years.

So, today's question is this: what are your experiences with medication for attention in children with autism? Good, bad, ugly?

Friday, March 12, 2010

#33 Death of a Pet

Wow, this is a hard one. Our dog, Hoover, has been diagnosed with cancer and has weeks or a few months to live. He's older than either of our children, so this is a big deal. We're telling the boys tonight and will write a bucket list with them of things to do with Hoover before he goes. Ice cream and bacon will factor on this list.

Nick is very sensitive and I predict much drama from him (and me, actually). Jack, however, is a complete mystery to me. I have no idea what to expect from him. He's seen Marley and Me and seemed to understand it. Sort of.

So today's question is this: how did your autistic child/student/patient react to the death of a pet? What did you do that seemed to help in this situation? What advice do you have?

Thanks in advance!

Friday, March 5, 2010

#32 Bussing

Does your child with autism ride the special bus or the regular bus? What factors went into your decision?

Jack has always ridden the special bus. With his IEP coming up, this issue needs to be addressed for next year. His big brother will be in 5th grade (the oldest grade on the regular bus) and may possibly be able to watch out for his little brother. Jack hasn't said a word about riding the same bus as his brother, but other kids in the neighborhood (we have LOTS of them) have asked why Jack rides a different bus. THey accept the answer readily, but I wonder. Should we take the plunge and put Jack on the regular bus for second grade?

What are your thoughts? Thanks in advance for sharing!

Sunday, February 21, 2010

#31 IEPs

We just got a notice from our son's teacher that she's preparing for his IEP meeting and wants to know what goals (social, academic, speech, OT, PT) we want to set for second grade. Frankly, I'm always baffled by these request. I sort of know what I would like to see but the specifics are really not in my specialty.

I'd like for him to be reading at grade level before the end of second grade (which is, I think, very realistic at this point and with this teacher), but beyond that, I'm not sure what sort of academic goals I would push. "At grade level" seems good to me, especially since this school district isn't slack in academics. I'd also want him spending more academic time in the typical classroom, as he becomes able to do so.

As for social, I want him stimming less at school, and I'd like that to be a measurable goal. Not sure how, but perhaps the teacher will have a better idea. But that is becoming a big barrier between him and his peers. They just don't know what to do when Jack starts spouting movie lines randomly.

OT, PT, and Speech are much more measurable. I want Jack's handwriting to be more controlled, his core strength to continue improving, and his receptive language and conversational reciprocity to improve. Also, I'd like the OT to work on sensory techniques to get Jack concentrating better in the typical classroom. She's had amazing success with my firstborn.
Then, there's the bus. Nick will be in fifth grade (the oldest grade on the bus), and I wonder if he would be enough of a supervisor for Jack to ride the regular bus. I am pretty sure one friend of mine thinks I'm being way too overprotective having Jack on the "special" bus as it is.

Anyway, to today's question: How specific are you with requests like this? Do you get detailed with goals, or do you feel comfortable with your teachers, intervention specialists, and therapists taking care of the specifics? I feel a very high level of trust with the school, but if I didn't, I'd be a lot more concerned.

Tuesday, February 9, 2010

#30 A Question of Words

My other blog, Questioning my Intelligence, touches on the topic of autism today, and today's question stems from that essay.

Has anyone shared kind words with you? Sometimes, it seems that parents of children with autism only get dirty looks and criticism from others, but I know that there are people in the world who share kind words and smiles, too. Today, let's share those stories...either of kind words you've given to others or kind words someone has given to you.

One day about a year ago, a woman who works at our church preschool stopped me and shared a story. She had helped a friend by watching her children one morning. One of the children was autistic, and the experience helped her see just a bit of what parents of kids on the spectrum deal with day to day. Her friend had a hard time finding someone to watch her kids and really had appreciated the help.

The preschool mom knew Jack wasn't as severely affected as this other child, but she told me that if I ever needed someone to watch him, even on the spur of the moment, to call her.

I'd recently been dealing with the fact that a neighbor didn't want Jack in her house because he makes too much noise. At least, that's what she said. To have someone reach out to me with such a generous offer really helped assuage some of the annoyance and hurt I was feeling.

What kind words have you heard or given? What effect did they have? What keeps you from speaking kind words when you can?

Thursday, February 4, 2010

#29 Dealing with Ambiguity

Given the Lancet's recent retraction of Andrew Wakefield's article that started the whole MMR vaccines-cause-autism scare, I'm thinking again about how ambiguous the world of autism is. We don't have a good answer to a very important question: "What causes autism?" This sucks.

And of course without that answer, we have a tough time treating autism effectively. A treatment (whether it's biomedical or behavioral doesn't matter) seems to help one child but not another. A whole set of treatments helps one child but not another. For every so-called "recovered" child out there, there are uncounted numbers of children whose parents did the same treatments without the same happy results This sucks.

And of course without a clear protocol for treatment, two things happen. First, legitimate doctors and therapists promote treatments they genuinely believe might help. Their clinical work may turn up something useful...or not. That's clinical science. Second, snake-oil salesmen and unethical doctors who know their therapies don't work bleed families dry, drain retirement funds, and force some families into bankruptcy by selling false hope. This sucks, too.

And the fighting that results on message boards and in print between the different sides of the autism debates feeds on all this ambiguity, fostering factionalism, chaos, judgment, and hatred. Honest to goodness hatred. If you're a fan of biomedical/detox interventions, how many times have you rolled your eyes at someone promoting ABA? If you're a fan of behavioral therapies, how many times have you rolled your eyes at someone who is detoxing their autistic child using a special diet or chelation therapy? Come on, you know you have done this. Because without facts and good science and hard numbers, autism becomes more than a pervasive developmental disorder; it becomse a philosophy, or maybe a religion. It's about faith, not fact. And faith is a powerful thing.

There's a lot that sucks about all this. Unfortunately (like we need more unfortunate in this situation), we parents have to DO something to help our children. We have to make choices without good information, and we want to believe that the choices we make are right. There's too much at stake.

Because George and I are both pretty mainstream in our medical thinking, we decided over three years ago to use more mainstream treatments: speech, physical, and occupational therapies, and our school district's TEACCH-based special education classes. We also took the child psychologist's advice and put Jack in activities and classes with typical kids. He goes to camp and VBS in the summer (with a helper to keep him focused). He has inclusion time every day at school. And he's making really good progress. All his teachers and therapists and his doctor are happy to see how far he's come. Since what we're doing seems to be working, we're quite logically sticking with it. But there's always that little voice that says, "What if we're missing something?"

I really hate that little voice.

I'm sure doctors and therapists and educators face the same dilemma in their own actions, and I appreciate them weighing in on this question as well.

How do you make choices in this profoundly ambiguous situation? How certain are you when you do something that it will work? How do you decide if it's working or not? How do you know it's time to stop and move on to something else? In short, how do you deal with the ambiguity surrounding autism?

Saturday, January 30, 2010

#28 Eye Appointments

Two and a half years ago, we took Jack to the optometrist on our military base for his first eye exam. The doctor was able to get enough information to say that Jack's eyes were fine, but now we need to take him again, this time to a civilian provider. She's highly recommended by the schools and an acquaintance from church who is very calm and competent. I think Jack will be much more cooperative now, especially because he WANTS glasses, just like his friend at school. We went through this with our firstborn (who may now actually need glasses) two years ago when several of his friends got glasses.

Please share your experiences with optometry exams for kids on the spectrum. Eye exams are, of course, less invasive and have fewer weird sounds and smells and sensations than dental exams, but they're still definitely outside the routine.

Sunday, January 24, 2010

A Very Good Week

Good news is rolling in.

First, a few weeks ago, Jack's PT at Children's told me she thinks he'll be discontinued from physical therapy after his next evaluation, which will be in late February. She thinks he's closed the gap. Yippy!

Last Tuesday, Jack's SLP told me he is doing GREAT! He's still got a long way to go, but since we moved therapy to Tuesday from 5:00 on Friday evening, he's at least able to focus better.

Friday, Jack's TEACCH teacher sent a note home saying that Jack got ALL the first grade Dolch sight words right. The few he didn't know immediately, he sounded out until he got them. She was amazed and so am I!

Also on Friday, his private OT told me that she expects to reduce service to Jack, going from 30 minutes every week to 30 minutes every other week. He's made so much gap-closing progress since his last evaluation (which showed him as much as four years delayed in some areas of fine motor development) that weekly sessions are probably no longer indicated.

At home, we're seeing across-the-board improvements in speech, social skills, and sensory tolerance. He actually sat through Avatar yesterday! Well, he spent the final fight scene on the floor "taking a nap" with his eyes open, but still. This is huge improvement.

We're also seeing tons of stimming at the same time, which has been a pattern for him during periods of progress. Playing with cars and trains, making noises, and blurting out movie lines are all going strong, almost but not quite constant when he's not actively engaged.

But that's okay. I'll take what I'm getting and be hugely grateful for it!

Please share a bit of good news about your child/patient/student, even if you have to think hard about it. Because I really believe what gets us through this with our sanity intact is looking for the good news with an eagle eye and always keeping it in mind. It's the knot in the end of our rope when we need it to be!

Saturday, January 16, 2010

#27 Imagination

People on the autism spectrum often show little imagination. In children, this means little or no make-believe play. Jack's play was very repetitive, with little imagination evident, so we put his big brother, Nick, in charge of teaching Jack how to use his imagination.

Nick has enough imagination for ten children and accepted his responsibility readily. It worked. While Jack can still be frightfully literal ("NO! I am NOT a cuddle-bear. I'm a boy!"), he is showing much more imagination these days. He suddenly decided he likes Pokemon now, and he's using a bunch of random stuffed animals to represent his Pokemon characters. Only one is an actual Pokemon.

This morning, he wanted to watch Men in Black Two, and went looking for his MIB glasses, which he could not find. I refused to help him look, telling him it was his responsibility to keep track of his own toys.

Since he couldn't find the MIB glasses, he's wearing is glow-in-the-dark Harry Potter glasses. They don't at all resemble the dark shades with black plastic frames he calls his MIB glasses. The Harry glasses are whitish without lenses. But he's happily substituting anyway. This may not seem huge to most people, but it does demonstrate a level of creativity and imagination Jack didn't demonstrate a year ago.

I LOVE progress!

What do you do to stimulate imagination in your child?

Friday, January 8, 2010

#26 Developmental Patterns

I'm reading several books at once right now (things are getting back to normal around here!) and starting to search out some new autism blogs. A common theme I've stumbled upon is how shockingly uneven development in autistic children can be. In some areas, a child may do quite well, even precociously, and in other areas, the same child may exhibit little to no age-appropriate progress.

Books like What to Expect the First Year and What to Expect the Toddler Years are pretty useless for helping parents identify autism. Last time I checked (a few years ago before I threw my copies in the trash), the information on autism was largely incorrect or misleading, and definitely focused on extreme cases...which are not the majority of cases. Since these were my developmental bibles for my children, no wonder I didn't see the warning flags for what they were.

Most developmental books I've read stress that normal children have uneven development. A friend had her baby daughter the day after I had my firstborn (Nick), and her daughter showed precocious gross motor development, climbing stairs at six months, walking at 8 months. But her fine motor skills were poor in the first year. Nick, on the other hand, walked at 12 months, but could handle and manipulate very small objects with ease, even stacking blocks as high as he could reach when What to Expect said he should be stacking four blocks. Both children were developing normally.

So where is the line between normal uneven development resulting from natural variations in brain growth and abnormal uneven development resulting from a Pervasive Developmental Disorder?

As parents of autistic children, we often ask the question, "Where is the line....?" And damn it, there's no answer. Or at least no clear-cut answer.

I knew something was wrong after Jack had been in preschool for 8 months and still didn't act at all like his peers. Hints came sooner, but my ignorance was astonishing. I had read dozens of early development books (even the scary parts about autism and fragile X and cerebral palsy, because I'm thorough that way). Had I known then what I know now, he would have had evaluation at least 8 months sooner than he did. But I just did not know. The right information just wasn't available to me in the books I'd read.

Some parents beat themselves up for delaying, and I don't see the point in that. How could I have known? Who would ever have thought my happy, healthy, giggly boy had autism? He wasn't Rain Man or a savant or sitting in a corner banging his head. There just weren't any dramatic signs like the books indicated there should be.

The books need to be rewritten.

Anyway, how did/do you--as a parent, relative, care-provider, teacher, therapist, or doctor--recognize that some invisible line had been crossed with your/a child?