Questioning Autism

The Plunge

2011-10-15T05:37:00.000-07:00

Today, I gave Jack his first dose of Ritalin. We're going to watch him carefully to see if the dose is right, if any unwanted side effects, if his personality changes. I so pray that this works mainly to help him at school but also to feel more engaged with the world rather than just focused on his stimming.

Yesterday was unbelievably stressful. Our appointment with the developmental pediatrician was just 30 minutes (they are usually 1.5-2 hours), and it was presented upon scheduling as a "meet and greet" so the new doctor could get to know his patients. Instead, when Dr. S walked in, he introduced himself to Jack, had Jack introduce me to him, and then said, "Today's visit is mainly to discover if there are any urgent issues you need addressed right now because it's been so long since Jack had access to a pediatrician."

Why, yes. We do have an urgent issue.

I was so relieved that Dr. Z, Jack's previous doctor, had left detailed notes for Dr. S about Jack's attention issues, which have actually grown much worse since school started in August. I asked all Jack's teachers, aides and school therapists to write summaries of what they see in Jack right now, plus I gave him a copy of Jack's Multi-Factor Evaluation (or whatever they call them these days!), and Dr. S appreciated the data.

He presented himself as an evidence-based doctor and gave me the evidence for attention medication. I already knew most of it because Dr. Z had already told me, but Dr. S's confirmation absolutely put my mind at ease. He also didn't blink when I refused the flu vaccine for Jack and explained that I'd promised Jack he wouldn't get a shot this visit. Jack is completely current on all other vaccines, but he's never had a flu shot. He's not in any of the high-risk categories (other than his age), so I feel fairly comfortable about this. Hopefully, we can get him the mist in a month or so, but I won't subject him to his terror of needles until absolutely necessary.

Although it was a brief visit, I was impressed by Dr. S. He seems to have been minted in the same mold as Dr. Z, which is comforting. We'll stay in touch with him via phone as we shake down the medication dose and schedule another appointment in about two months.

The plunge is scary, but I so pray that this works to help Jack.

Letting Kids Be Who They Are

2011-08-20T05:31:00.000-07:00

Parents of children on the autism spectrum have so many things to deal with that parents of typical children don't really think about, so I generally don't judge them when their decisions don't make sense to me. Just because a particular treatment doesn't seem sensible to me does NOT mean it isn't perfectly sensible to someone else. I applaud parents for taking steps...any steps...to help their children, and as no one really knows diddly sh*t about this disorder, who knows what steps might be the right ones? I sure don't.

This year, however, I found myself confronted with a negative judgment on another mommy, one I just can't get over. Nick asked why we couldn't invite one of Jack's friends, let's call him Bill, who had come for a playdate over the winter. Bill's mom had stayed for the playdate because Bill is more severely autistic than Jack, and she and I both wanted her to be here.

When Nick proposed a second playdate, I balked. He asked why. I said, out of nowhere I care to examine too closely, that Bill's mom wasn't nice and I didn't want to have to entertain her.

Not nice? She was perfectly pleasant and chatty. Whatever made me think she wasn't nice?

Then, it came to me. When Jack asked Bill to play with Thomas the Tank Engine toys, Bill said no and ran off to force his company on Nick and Nick's friend. Bill's mom said, somewhat condescendingly, that she decided Bill's obsession with Thomas was too immature, so when he was in first grade, she took all his Thomas toys to GoodWill and refused to let him play with or talk about Thomas so he could develop more age-appropriate interests.

When I shared this with Nick, he said, "Why would she do something so mean?"

Totally.

Part of me can understand this mother's desire to make her child more like his peers. But he will never be like his peers. And she knows this. She told me that Bill would never spend much time in inclusion settings at school because his behaviors were too disruptive and she really didn't expect him to ever move to inclusion. He would always be in the autism or LD classrooms, and she accepted this.

So why take away his Thomas toys? Perhaps she was sick of them, sick of listening to "Thomas the Tank Engine, Rolling along, Doo Doo Doo Doo...", sick of peeping and sound effects and such. In that, she would have my complete, heartfelt sympathy. But the fact was that Bill wouldn't play with Jack, who wanted to play with him, because Bill was too busy trying to include himself in Nick and his friend's play. Bill wanted to do what the big boys were doing, but the big boys didn't appreciate his pushiness even though they did try to include him. At least for now, Bill doesn't fit in with either group.

Jack's interests are not exactly age appropriate, but then, I'm positive I don't want him playing Call of Duty Black Ops (Rated M for Mature Audiences), like some 8-year-olds do. Kids grow up too fast these days, and while I want Jack to have friends his age and interact as well as he can, I can't imagine taking the joy out of his life by denying his pursuit of things he loves.

A few weeks ago, I took Jack to see Winnie the Pooh. He didn't want to go with George, Nick, and me to see the last Harry Potter movie, so we had a babysitter come for that. Jack loved Winnie the Pooh. He laughed and cheered and bounced in his seat. He had a smile on his face the whole time. If fact, it's the happiest I've ever seen him in a movie theater. I will take him to ride Thomas the Tank Engine in September when the really useful engine rolls into Lebanon. He looks forward to it all year, and not to take him seems the height of meanness.

His 9th birthday is coming up. Once again, all he wants is Thomas stuff. He wants me to decorate his room "like Thomas," because he saw a clip on one of his Thomas videos about a kid's room being decorated with Thomas stuff. That room was, of course, a toddler's room. I have ideas for making the room look less like a cluttered toddler's room and at least a bit more mature. (No Thomas wallpaper border or bed shaped like Thomas, for example!) He's never showed the least interest in what his bedroom looked like. I think this is progress.

What do you think about children on the spectrum having juvenile interests? How hard should parents push to encourage more mature interests? Has anyone had success in encouraging those more mature interests? If so, what did you do? What, in fact, are age-appropriate interests for 9-year-olds other than sports, which our children seem to feel are forced labor camps rather than fun?

Thinking about Parental Stress and Autism

2011-07-25T06:17:00.000-07:00

I have read in several places (and heard one NPR piece) about how parents of children on the spectrum report higher stress levels than parents of children with other disabilities, such as Down syndrome. The most likely causes of this are related to the nature of autism itself. First and foremost to my way of thinking, many children with autism are unable to show affection in ways that are satisfying to parents (hugs, kisses, saying "I love you," expressing appreciation for what the parents do, etc.). Lacking the ameliorating effects of this positive social feedback for their job as parents, they are much more likely to feel stress.

Frankly, I'm surprised actual research money needed to be spent figuring this one out.

In the past, I posted on Questioning my Intelligence that I don't feel excessively stressed by Jack's diagnosis, and part of the reason for that may be lessons learned during my struggle with depression. For me, Jack's diagnosis meant a lot of driving around and sitting in waiting rooms, and coordinating care with therapists and doctors and teachers. But at no point in this journey have I asked God, "Why Jack? Why me? Why our family?" When I read about people's stress on getting the diagnosis and as they continue to care for their child, I absolutely understand the rage, the fear, the self-pity, and the self-loathing.

I understand because I felt all those things twenty-five years ago when struggling with depression. Other than the fear, however, none of those feelings have touched me in relation to Jack's diagnosis. The fear is there every day: fear that we're not doing enough, not doing the right things, missing something that might help. There's also the fear of what challenges Jack will face and how cruel the world might be to him as he grows up.

But more fundamental to my ability to cope with the stress of having a child with autism is the level of feedback I get from Jack. He's high-functioning, affectionate, loving, deeply appreciative. He's verbal and says he loves me. That makes the hours of waiting in rehab, driving all over creation for appointments, worrying and fretting and thinking and stressing absolutely worth it and much easier to bear.

If he didn't have his demonstrative nature, if he couldn't talk or wouldn't hug, I wouldn't find any of this journey as easy as I have. A friend with an adult child on the spectrum was astonished when she witnessed Jack telling me he loved me and giving me a hug. Her son doesn't do that. It breaks my heart for her, but she seems to have made peace with it and appreciates her son for who he is. She glows when she talks about him, and that alone says a lot about her character. How I admire her strength and faith!

So here's my question for today. What do you do to cope with the stress? What is your perception of your stress level and to what do you attribute it?

This is a huge topic, with far too many variations for a single blog post...or perhaps a whole book. I'm just scratching the surface here, but feel free in your comments to bring up whatever strikes you most about the topic of parental stress and autism. I'll be posting in the future about those sub-topics that I've noticed myself (such as the stress caused by parents who act like you don't love your child if you don't put him/her on the GFCF diet or in ABA), but it would be great to have more suggestions!

Military Medicine

2011-04-23T07:30:00.000-07:00

Jack has been blessed for the past five years with Dr. Zernzach, a developmental pediatrician at Wright-Pat Air Force Base Hospital. Dr. Z diagnosed Jack and has met with him every six months since. He's answered countless questions, worked the system to get Jack the services he needs, and encouraged and cheered Jack on as he has made progress. When we were at the hospital seeing to Jack's foot injury, we saw Dr. Z across the atrium, and Jack said, "Dr. Zernzach is my favorite doctor."

So, of course, the Air Force is transferring Jack's favorite doctor to a base in Texas, to an administrative job in which he will not see patients.

No one, including Dr. Z, is happy about this. But that's the military for you: take someone who has amazing gift in one job and give him a different job that he doesn't want in a place he doesn't want to live. Yep. That's an awesome way to use taxpayer dollars to build morale and quality medical care.

Cynicism is smoke rising from the ashes of burned-out dreams.

Of course, I'm melodramatic in my disappointment. I know that Dr. Z will do a great job in whatever position he finds himself. I know that he will continue to advocate for quality patient services because he's a doctor and an officer and a gentleman of integrity. And in a few years, he can retire to private practice and do what he loves: see patients. I wish him all the best and send with him my undying gratitude for all he has done for Jack and for us.

We could transfer Jack's care off base to Dayton Children's, but the wait to see a developmental pediatrician there is l-o-n-g. Jack will be seen by Dr. Z's replacement in September, as per his regular schedule. But this also means that we cannot start Jack on attention medication until October (his teachers do not want him starting them at the beginning of the school year as their experience with that has not been good).

This delay frustrates me and George, mainly because it took us so long to work up the courage and conviction necessary to give meds a try and now we have to wait. At least we have health care; at least we have access to a major medical center that staffs developmental pediatricians; at least we'll get there eventually with the meds. Trying to look on the bright side, here. But it's hard.

After all, this is our son we're talking about.

On Report Cards, IEP Progress Reports, and Standardized Testing

2011-04-11T06:41:00.000-07:00

The boys' third-quarter term ended, and the school sent out report cards and IEP progress reports. We also recently received their results from the Iowa standardized testing conducted in our district.

It's a good thing I'm somewhat comfortable with ambiguity.

Jack's report card was surprisingly good, but second-grade report cards do not feel like data to me. For instance, Jack received an A in social studies, yet I decided early in the year that we would not do social studies homework. The second-grade vocabulary list included executive, judicial, and legislative; I'm not wasting my time or Jack's to study these abstract terms. I learned about government in 7th grade. It was easy to learn at that time because my brain had developed the ability of abstract thought. Neurotypical 2nd graders in Jack's class learned the words but, when questioned about their meaning, did not understand what they had learned.

Is this education?

Well, it passes for education in Ohio because it's part of the curriculum mandated by the state. But the reality for Jack is that he is more than a grade level behind in math, and while his reading skills are good, his reading comprehension is hampered by short attention span and impaired ability to communicate understanding of what he reads. Consequently, we focus on math and reading homework.

I saw the enormous effort Jack put into reading and understanding a lovely story about Hellen Keller, but because the story doesn't repeat the fact of Keller's blindness and deafness, Jack didn't understand that she could not see or hear...even after reading the story numerous times at home and at school. How, then, could he understand the three branches of government? He hears branch and thinks tree.

Last night while we played snuggle-bunnies before bed, George spoke for Jack's stuffed Stitch doll. Jack said, "Stitch doesn't talk, Daddy. He's a stuffed animal." Then, George joked, "What!?! I didn't get a talking alien? The Disney store ripped me off. That was money down the drain!" Jack said, "Don't do that to Stitch!" He thought George was going to flush Stitch down the drain. We tried to explain what George had meant, but I don't think Jack really got it because he kept a death-grip on Stitch until George left the room.

Jack earned a B in science. This actually seems more reasonable to me. He loves certain things about nature, so he's willing and able to learn. For instance, he was fascinated with the phases of the moon...because he can see it in the sky, see how it changes each night. It's a real, concrete thing.

Jack's grades are the result of a modified curriculum to accommodate his needs and must be affected/inflated by the aides he works with. When he was given the Iowa Achievement test, he had no accommodations other than a teacher at his side to keep him focused. She couldn't help in any other way. The scores, needless to say, were very low.

This standardized data isn't useful either because Jack's academic skills are nowhere near as low as the standardized test would indicate. These low scores merely tell us how poor Jack's attention span is and how hard it is to motivate him to do things he does not want to do.

In the broader picture, these failed attempts to quantify Jack's academic achievement symbolize the failed attempts of neuroscience to describe exactly what causes autism or what therapies can help any given child. The experts can't even come up with diagnostic criteria that make sense, despite their dedicated attempt in DSM-V.

We parents in the world of autism are essentially forced into a world full of ambiguity, irrelevant data, uncertain courses of action. We make decisions to act, wonder if these decisions are right, fret over uncertain evaluations of our decisions, and try hard not to scream with frustration.

I crave data. When I get it, however, it tells me little. And I move on.

There's really no other choice.

How do you feel about your child's grades and test scores? Do you feel they accurately reflect his/her ability?

Yes, I'm Still Here

2011-03-17T18:39:00.000-07:00

There has been a lot going on lately (mostly quite good), and I need to process and share. Writing about it will help me process, so hopefully you'll see more posts in the near future.

In the meantime, I have two things for you: a link and a question.

The Link: I had a blog reader share a wonderful link with me. I'd not heard of Roses for Autism, but what a wonderful organization doing good work.

The Question: Have you put your child with autism on attention medication? If so, how did it go? We're going to talk medication with Jack's doctor soon, and I'd really appreciate any information you can share!

"I Know What You're Saying..."

2011-01-07T09:19:00.000-08:00

Actual conversation:

Jack: Will you play hide and seek with me Dad?

George: Sure, pal.

Jack: OK. I will hide under the bed and you will find me!!

Several iterations of hide and seek later, with Jack hiding under the bed every time and shouting with incredulity, “You found me!!” when George walked into the room...

George: Jack, you really should hide someplace else; I know where you are hiding every time.

Jack: I know what you’re saying, Dad, but I just love hiding under the bed.

A Story from School

2010-12-01T17:04:00.000-08:00

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.

The Bus

2010-10-20T09:22:00.000-07:00

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?

Growing Social Awareness

2010-09-02T04:25:00.000-07:00

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 me...no 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?

Back to School and the Big Picture

2010-08-26T04:04:00.000-07:00

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?

#39 New Food

2010-07-31T05:05:00.000-07:00

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?

#38 Insight

2010-07-19T14:49:00.000-07:00

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.

#37 A Fun Question

2010-06-11T05:37:00.000-07:00

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?

#36 Plans for Summer

2010-05-12T09:11:00.000-07:00

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?

Jack and Hoover

2010-04-27T10:13:00.000-07:00

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.

#35 DSM-5

2010-04-20T09:50:00.000-07:00

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?

#34 Medication

2010-04-03T04:46:00.000-07:00

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?

#33 Death of a Pet

2010-03-12T06:41:00.001-08:00

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!

#32 Bussing

2010-03-05T07:21:00.000-08:00

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!

#31 IEPs

2010-02-21T15:44:00.000-08:00

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.

#30 A Question of Words

2010-02-09T05:03:00.000-08:00

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?

#29 Dealing with Ambiguity

2010-02-04T06:27:00.000-08:00

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?

#28 Eye Appointments

2010-01-30T04:28:00.000-08:00

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.

A Very Good Week

2010-01-24T16:17:00.001-08:00

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!

#27 Imagination

2010-01-16T06:27:00.001-08:00

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?

#26 Developmental Patterns

2010-01-08T04:17:00.000-08:00

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?

#25 How do you take breaks?

2009-12-30T06:41:00.001-08:00

Things have been quiet here for a while. Periodically, I take breaks from autism, if that makes sense. We live with it every day, sort of like an uninvited house guest. At times, writing or thinking about it too much narrows my perspective on larger issues, so I take a break. I don't read or write about it or surf the web for the latest study summaries.

And that's okay. We all need a break sometimes.

I'm feeling refreshed and ready to tackle hard stuff again, so I will. Today's question asks how you take breaks, get a second wind, refresh and renew yourself so you can dive back into the world of autism with less frustration and more balanced perspective. Do you need lots of little breaks--say, daily or weekly? Do you prefer months on end of just not thinking about it too much?

And Happy New Year, everyone!

#24 Holiday Stress and Joy

2009-12-07T05:10:00.000-08:00

What do you do to cope with the stress and joy of the holidays?

We're often so focused on helping our kids cope with the stress of the holidays...the sensory overload, the breaks from routine, the abrupt and unpredictable schedule changes. But what about us? How do we keep our own sanity?

This time of year, I have to make myself very consciously take deep breaths to roll with punches that ordinarily wouldn't require conscious thought. I find myself craving more down time than usual, time alone when people aren't calling for my attention, when I don't need to be "getting things done," when I can feel some peace and simply breathe.

And yet it's precisely the wrong time of year to get more of that sort of time! Especially because I love spending time with family and friends and participating in all the pageantry and tradition of Christmas. I need the peace and quiet, but I need--indeed, crave--the community and activities, too. Finding balance is just harder this time of year.

Prayer helps, but not much else.

What do you do to keep rolling with the punches? What do you need to stay patient and focused?

#23 Does your child react to Halloween?

2009-10-31T04:52:00.001-07:00

Holidays disrupt the routine that so many children on the autism spectrum enjoy. This can lead to meltdowns and shutting down because of the sensory overload. How do your children/students/patients react to Halloween? What do you do to help them cope?

Generally speaking, I am a Halloween and Valentine's Day Scrooge. They are excuses to eat huge amounts of sugar, and while I don't subscribe to the "sugar" sensitivity belief (I think the "high" is more to sensory stimulation than what's ingested, but that is my opinion based on observation of my own kids), the sensory stimulation of Halloween parades and parties and THEN trick-or-treating is just too much.

Jack was so excited about the school's Halloween activities yesterday. He wanted to do the parade, which at his school included around 1,100 kids and was outside on a very windy day. He walked with his regular inclusion class rather than the TEACCH class, with his aide on hand as an extra set of eyes. He wore his costume at least part of the day and enjoyed his class activities.

Last night he could tell me what costumes his friends wore and what he ate (or didn't eat) at the party. It was a positive experience overall, even if his speech therapist got precious little good work out of him last night at 5:00.

It was not my choice to schedule OT/ST at the hospital at 4:30-5:30 on Fridays. The OT cancelled yesterday. Probably a good thing.

He also wants to go trick-or-treating RIGHT NOW, 8 hours before begging begins. It'll be interesting to see how long he lasts this year. It seems like every year, he goes a bit further with his brother and dad (I'm always home handing out the candy). Two years ago, he did our cul-de-sac, announced, "I'm done!" He set down his candy bucket, took off his costume (a Thomas one that's easy-in-easy-out), and ran home, leaving the bucket and costume on the sidewalk. Last year, he let George bring him home after going to more houses. His tolerance for all the stimulation improves each year.

And speaking of his costume.... Jack goes as Thomas the Tank Engine every year, and he loves his costume (which we've had for six years...his brother used it before him!). It's looking a bit rough, but what a good investment it has been since it's one-size fits all!

Please share your Halloween experience, scary as it may be!

And Happy Halloween, everyone!

#22 Classroom Volunteers, Parents at Therapy Sessions

2009-10-20T14:26:00.000-07:00

I finally got to volunteer in Jack's inclusion class last Friday. What a HOOT! His TEACCH teacher made sure he came to the inclusion class while I was there, and I got to play some games with Jack and another child working on initial blends (matching initial sounds of pictures on cards to the proper blends on a chart and such). Jack did so much better than I thought he would (much better than he would have done last year). It helped that his partner was his best friend, a very kind and smart boy whom Jack befriended last year in kindergarten.

I also worked with several kids from my literacy tutoring last year...kids who are now doing really well. If you've ever considered volunteering at an elementary school to help with reading, I highly recommend it. It's so rewarding and fun!

Jack's TEACCH teacher can't have volunteers in her class. Some of her students become too agitated by strangers being there to work (breaking routine...such a no-no for so many kids on the spectrum!). Last week, some of them were a mess because all the aides were subs for three days. I totally understand this and don't resent it, but it is frustrating not to see for myself what is going on. I'm just curious, not at all concerned, mainly because his teacher is such a good communicator, asks lots of questions, and really listens to what I say.

Interestingly, she has invited me to stick my head in the class whenever I'm in the building to say hi to Jack. I appreciate the invitation and will definitely take the opportunity in the future, while being careful not to abuse it. I know how little work his speech therapist, OT, and PT got out of Jack early on when I sat in. I had to stop going back with him because he focused on me (asked for hugs every 30 seconds, wanted to sit in my lap, etc.).

Today's question is this: How welcome are you at your child's school? If you're a teacher, how welcome do you make your students' parents feel? If you're a therapist, do you prefer to work with children alone or with a parent present? If you homeschool, did parental accessability to the classroom have anything to do with your decision to pull your child from school?

#21 How do you deal with stims?

2009-10-11T05:51:00.000-07:00

For those who don't know, stimming (short for self-stimulation) is a repetitive behavior that absorbs a child's attention. These behaviors are extremely diverse, ranging from self-injurious head banging, to staring at fans, to reciting movie lines over and over, to playing with trains at eye level for hours on end. All sorts of odd behaviors crop up in children on the autism spectrum, some more alarming than others.

Stimming behaviors may rise from the person's need to distract him/herself from unpleasant things in the environment or sensory inputs he/she can't handle. Think of Dustin Hoffman's character in Rain Man: he would start reciting the "Who's on First" skit whenever things got stressful for him. Lots of children on the high-functioning end of the spectrum can learn to control their stims while at school, but when they come home, they need to decompress with some stimming. Stimming may also be an obsessive-compulsive behavior...something the brain simply demands the person do for no good reason.

Because so little is understood about WHY people with autism stim, so-called experts in the autism community disagree on what to do about stimming. Obviously, self-injurious stimming (running hands under scalding water, head banging, picking) must be extinguished for safety and health, but what about more benign stimming? Should all stim behaviors be extinguished? Should stimming be allowed as a reward for good work? How forcefully should stimming be extinguished? It's confusing and stressful for parents to have conflicting advice. But without knowing the "why" of stimming, how can experts confidently give good advice? I'm baffled.

Jack has recently been singing a lot at school when he doesn't want to work. His repertoire of songs has grown over the years...it's not just Blue's Clues anymore. But it's not appropriate at all in a classroom environment or on the bus to break out in random songs. Kids are going to pick on him, plus he's distracting to others.

At home, the stimming has changed a bit. He sings randomly and blurts out movie lines at the dinner table, for instance. This morning, however, he was eating an apple fritter (a fall treat for our family), and said, "This is the life!" It's a movie line, but used totally appropriately and intentionally.

He also makes annoying repetitive noises while playing with his cars and trains. But the noises he makes are becoming more varied and unpredictable, more like normal little boy noises, and often, they are JUST LIKE regular little boy behavior, especially when he includes his brother in his play, which happens more and more. This reminds me the line between abnormal and perfectly normal behavior can be quite hard to draw.

It also gives me hope that Jack's overall stimming is heading in the right direction.

Jack's noises are hardly difficult to deal with. Annoying, yes. But not difficult. Jack's diagnosis, PDD-NOS, is a form of autism that generally shows less perseverative behaviors than full-blown autism, which can involve downright alarming stims. In our case, we chose not to deal harshly or absolutely with extinguishing stims. We allow Jack to have a "decompression" time when he gets off the bus because he needs it. Trying to engage him in conversation is difficult at the best of times, and downright impossible when he gets off the bus.

I have no idea if this is the right thing to do, but it feels right to us. For some reason, Jack needs these behaviors, and if we can work on extinguishing them in certain situations (I discourage inappropriate movie lines in public and at the dinner table, for instance), we can hopefully move him in the right direction without being cruel. We ALL do things to calm ourselves and deal with stress; we usually do them in private and appropriately, or we engage in public activities (yoga class, dining out with friends) that serve the same purpose.

Guiding Jack toward more appropriate stimming has been slow, but we're making progress. Perhaps if we'd used ABA training, he would have made progress faster. But is faster better with benign stims? I simply don't know.

What stims do you see in your child/patients/students and how do you deal with them?

#20 Coping with Uncertainty

2009-10-02T08:40:00.000-07:00

I take Jack to his developmental pediatrician every six months. I try to be organized for the meeting, with work samples, copies of IEPs and any evaluations that have been done, etc. I tell him what Jack is doing, what milestones he has reached, what the schools are doing with him, what new difficulties he's having.

But I always leave the appointments feeling like I barely scratched the surface, like I needed to ask more questions (even though I know most of my questions have the same answer: "We don't know"). There's always an uncertainty that leaves me feeling uneasy, as if I should have said more or asked more. But how much could or should you cram into an hour-long meeting?

Basically, I feel like, right now, at this time, everything that can be done for Jack is being done by me, George, Nick, the schools, and the therapists. He's making progress, and it's all good. But I keep looking for the blind spot, whatever it is that I might be missing that I'm not even aware of. The doctor is there to catch my blind spot because he knows more about autism than I ever will, and if he makes no recommendations, is it because there is no blind spot or because I didn't give him enough information to see that blind spot himself? I am, after all, the expert on Jack. I spend more time with him and know him better than Dr. Z ever will.

This last meeting, Jack started feeling confined and needed to step out into the hall. He walked out, blew me a kiss, said, "I love you, Mommy!" and left the door ajar while he "went alien" with his Ben 10 watch in the hall--play that is really more stimming of repeating movie lines and gestures than imaginative play, but whatever. At least it's not just Blue's Clues anymore. Dr. Z commented, "He's a very happy person, isn't he?"

Yes. Yes, he is.

Is my best--and the doctor's--enough? It has to be, I suppose, but I still wonder. Grappling with the unknown is hard work. I wonder if faith and our best effort are enough.

Two things I do know are that Jack is a happy person and that he's making progress. I'm glad Dr. Z sees that for himself in our hour-long visits. Because maybe, just maybe, that is the most important concrete measure of what we're doing. If we were pushing too hard, he wouldn't be happy. If we were not pushing hard enough, he wouldn't be making progress.

How do you cope with this uncertainty? Can uncertainty even be coped with? Some days I say yes, I'm coping quite well, thank you very much. Other days, I'm wandering alone in the forest wondering where the hell I am. I'm starting to think this is normal. What do you think?

#19 Siblings with Greater Risk of Problems

2009-09-22T04:14:00.000-07:00

Today's question really is for both parents and therapists/doctors/teachers/aides. I would appreciate a fuller picture of issues for siblings of children on the spectrum who are not autistic. Anecdotally, in the forums it seems like lots of families have multiple children with autism, but there is rarely discussion of non-autistic siblings.

Do you noticed more problems with siblings who aren't on the spectrum, such as ADD/ADHD, behavior problems, quirkiness, social problems, speech problems, etc.? What problems have you seen specifically, and how have you dealt with them?

#18 How are you feeling about the new school year?

2009-09-02T11:19:00.000-07:00

I'm feeling pretty good, myself. Jack has a wonderful program set up, all the members of his team seem up to speed and doing fine, and he's happy....mostly. This morning, at the very last second out the door to the bus, he decided he NEEDED Buzz Lightyear to go to school with him. Um. What about the "no toys at school" rule, a rule I am hugely in favor of, a rule we discussed last week before the first day started? He refused to wave at me as the bus went by. He just glowered.

I think I can handle that, but I'm very curious to know how this played out at school. I sent an email to his regular ed and TEACCH teachers to let them know. Usually, when I notify teachers of a potential "off" day, Jack turns in his best work ever. Go figure.

So, how are you feeling this early in September?

#17 Is Progress Ever Frustrating for You?

2009-08-17T04:55:00.000-07:00

With children on the spectrum, it's so easy to get, well, comfortable with certain things. Our children can be so habitual, and habits can be good things...or at least things you come to expect.

Take, for example, Thomas the Tank Engine. So many autistic children obsess on Thomas that actual scientific studies have been conducted to figure out why. Jack has loved Thomas since he was two. He plays with the engines repetitively, moving them back and forth at eye level for hours on end if left to his own devices. When he was two, we thought this was evidence that he would grow up to be an engineer like his grandfather. Then we learned at almost four about autism and that this sort of repetitive play for years on end is BAD, not normal, not cute.

Sigh.

For years, Jack wanted a Thomas cake for his birthday, and every year, I shelled out the $20 for one at Kroger. Jack only eats frosting and is quite happy with a spoon and jar of frosting, so this $20 seemed a waste of money. Last year, when we removed the Thomas track and wind-up train from the cake, I set them aside with plans of making a Duncan Hines cake this year and reusing the kit.

For the last six months, Jack has been talking about his birthday and what he wants to do. "I want a Thomas cake and lots of presents and to go to the Blue Fish Museum for my birthday." (Blue Fish Museum = Newport Aquarium) Anyway, a few weeks ago, we were at Kroger walking past the bakery department and Jack saw...a Ben 10 cake. "Mommy, mommy, mommy! Look, a Ben 10 cake. I want a Ben 10 cake for my birthday!"

I replied, "Don't you want a Thomas cake like always? You love Thomas."

He said, "No. I definitely want a Ben 10 cake. It's unusual for me."

Unusual, indeed.

Have you ever made plans--large or small--with the autism in mind, and had your child make progress in an unexpected and somewhat frustrating way? Or am I just a whiner?

Reason to Hope for the New School Year and a Question at the End

2009-08-04T05:04:00.000-07:00

Each school year since Jack's diagnosis, I have fretted about his teachers and therapists for the upcoming year. It's an unknown...will his team be made up of good people who "get" him, or not? I try to trust, but it's hard, especially after last year's special education teacher seemed so, well, negative.

I'm negative about negativity, if you know what I mean. Ironic, huh?

Yesterday, I got a call from Jack's new special education teacher, Mrs. Megan. I'd heard wonderful things about her from an aide who works in her room. Usually, when aides say nice things about teachers, they are right. If they say nothing, it speaks volumes. So I was cautiously hopeful.

After our conversation yesterday, I'm happy dancing on the top of Mt Everest. Here are some things I like in a teacher:

1. A warm, positive, happy personality. Oh, my goodness, Mrs. Megan is upbeat and downright perky.

2. TEACCH trained. Jack is too high-functioning for a full-blown TEACCH classroom, but teachers who have TEACCH training understand that children on the spectrum need visual structure, and clear and simple auditory instruction reinforced with visual cues. They also don't decorate their classrooms with visual "noise" that distracts kids from their work. Mrs. Megan went to North Carolina two years ago for a week-long TEACCH conference. She gets it.

3. Organized. Mrs. Megan is already planning activities for her students, and school doesn't start until August 25.

4. Clear communicator and team leader. In a 15-minute phone call, Mrs. Megan let me know her philosophy and approach to teaching. She wants us to come visit her class next week so we can see for ourselves what she's planning and give her the scoop on Jack. Not a hint of "I'm-the-teacher-and-stay-the-hell-outta-my-classroom-'cause-I-know-what's-best-for-your-kid." What a relief.

5. Good listener and no preconceived ideas of "the best way" to teach something. When I told her I thought Jack was learning to read more easily with a whole language approach rather than phonics, she jumped all over that and let me know her very open approach to teaching reading. No prejudice against whole language at all. So refreshing!

6. Confidence. Mrs. Megan is experienced and confident and secure in her ability to handle her job. YEAH!

7. Nice. She just seemed so NICE over the phone, the sort of person I want to meet at Barnes and Noble cafe to share a mocha and conversation.

I actually cried tears of relief after our little conversation and thanked God we are so blessed with the right people at the right time in Jack's life.

Jack will have only six kids in his special needs class, with a teacher and two aides. I am hopeful that Jack will get the academic push he needs this year to get him going on the right path, so he can spend less time pulled out and more time in a regular inclusion class eventually.

We shall see, but now I have reason to hope.

What do you want in a special education teacher? If you're a special education teacher, what do you want in a student's parents? Please share.

#16 What is one of your amazing moments?

2009-07-31T13:00:00.000-07:00

Because I have a child with a serious disability, each major or minor milestone met both surprises and amazes me. Today, I had one tiny moment that took my breath away.

Nick and Jack were playing in a McDonald's play place outside. There was much gleeful screaming and yelling...the normal sounds of six or seven boys under age ten playing in a small space.

Nick came off the slide to sip his drink, and I asked, "What is Jack doing?"

Nick replied, "What all the other kids are doing." Then he ran back into the tunnels.

What all the other kids are doing. Wow.

Can you describe one (or several) of your amazing moments?

#15 Am I the Only One?

2009-07-24T18:20:00.001-07:00

I am cleaning out/up my library and have a stack of books on autism THAT I'VE NEVER READ!!! Yikes, there are five books just waiting to be read, two of which I bought in the last two months and promptly forgot about. A year ago, I donated and threw away a bunch of pamplets and crap (much of which all said the same things, over and over). I just keep collecting.

The irony that I am writing a book on autism to be added to the PILE of autism books available right now is not lost on me at the moment.

What sort of answers am I looking for in all these books? Is one of them hiding a crystal ball that will show me Jack's future?

What's your feeling about autism books? Which ones do you like and why? Which ones do you read a chapter or two and stop? What do you want in a book?

#14 What causes the most stress in your life?

2009-07-19T18:09:00.000-07:00

There was a moderately interesting report on the New York Times Well Blog about mothers of autistic children having more stress than mothers of children with other types of developmental disabilities. The reader comments, however, are utterly fascinating. I wasn't at all surprised by most of them, but wanted to ask the question here. What causes the most stress relating specifically to autism for you?

Teachers, aides, therapists, other relatives...please weigh in on this issue. Your perspective is ALWAYS welcome here.

BTW, while I find this study and its discussion fascinating and important, I'd honestly prefer research dollars to be spent on finding effective treatment, better support for adults with autism, and better understanding of the causes of autism. Those seem like higher priorities to me. Just sayin'....

#13 Changes in Behavior

2009-07-09T04:16:00.000-07:00

Out of the blue, Jack has begun pitching fits, screaming at his brother, and refusing to cooperate. He's always been pretty sweet and benign, even in protest, so this change is dramatic. At the pool yesterday, a little girl touched his toy fish and he screamed at her "Those are MINE!" I intervened and made him apologize to her, but soon after we had to leave the pool early (with much screaming and crying) because he kept yelling at his brother, who really wasn't being offensive at all.

Jack is basically acting like a three-year-old wrapped in a six-year-old body.

Tthe little girl at the pool who touched the fish thought they were hers because she has, it turns out, the exact same fish. Nick collected our fish while I got Jack, screaming in protest, out of the pool and ready to leave, and the little girl, who was probably three, walked over and started pulling our fish out of the bucket. I said to her (kindly!) that they were our fish and we needed to leave but she could play with them next time.

Her mother walked over, and said, "We have seven fish, and they are missing." She had to speak loudly because Jack, standing next to us, was SCREAMING "I want to stay!" over and over in a high-pitched, panicked voice. I said, "We have seven fish, too, and I'm pretty sure these are they. How odd." She picked up and examined our fish closely, one at at a time, and gave off body language that indicated she thought I was lying and trying to steal her $2 drugstore fish from under her nose.

I left Jack standing at our table refusing to put his shoes on and screaming, and started looking for the other fish (they are brightly colored and easy to spot at the bottom of the pool). The lady went over to her pile of pool stuff and finally yelled out, "I found ours!" in a tone which indicated we were off the hook this time but she'd keep her eye on us. No apology, no kindness, no sympathy, no nothin'. Jack was still screaming, I made him put on his shoes, and we left.

Weird.

I hope consistent, firm discipline takes care of this in short order, but I'm not sure. I'm not sure of ANYTHING where Jack is concerned, as I'm sure many of you can understand all too well!

Have you experienced these sudden changes in temperament and behavior? How did you handle them? Did they respond to discipline? What sort of discipline did you use?

#11 How does your child travel?

2009-06-23T19:40:00.000-07:00

Does your child handle travel well? Given how children with autism tend to cling to routine, vacations can be mine fields for them. I heard of a child who will not sleep in a hotel room unless there are two double beds with a table in between with a lamp on it. If the room is arranged to his satisfaction, he will happily go to sleep.

Jack's routine is that there is no routine, so he travels really well. He enjoys long car rides and traveling by plane, and is generally very patient. Once at the destination, he is happy for a few days, usually, and then starts asking to go home. He won't eat at restaurants (except McDonald's, of course), so we carry a jar of peanut butter and juice boxes with us everywhere. Servers look at us funny when we say all he needs is a spoon. He detests tours. Two years ago, we went to Vermont for a vacation, and I had to pull him out of the Vermont Teddy Bear Company tour, but we did get him to cooperate (grouchily) at the Ben and Jerry's tour by promising him ice cream at the end. Overall, travel with him is pleasant, but we are careful to make sure he has his Thomas trains and cars to play with.

How does your child travel?

Athletic Achievement Can Help ADD/ADHD

2009-06-18T07:37:00.000-07:00

Recently, on The New York Times blog Well, Michael Edwards wrote about his experiences growing up with ADHD and how running track helped him succeed in school and life. He is now a principal...one I imagine most readers here wish our kids had!

I found this article extremely inspiring and wanted to share it with you.

An A.D.H.D. Student Finds Confidence on the Track

My take on this is that all children--not just those with disabilities--need to find a "thing" which they enjoy and at which they excel to develop a sense of self-confidence. Temple Grandin has argued that children on the autism spectrum especially need to be encouraged to find their "thing" and have opportunity to do it. Children--disabled or not--whose achievements don't fit with the verbal/analytical testing model in our schools are particularly vulnerable to falling through the cracks in this. Whether it's sports, art, writing, reading, ballet, video games, crafts, or cooking, we ALL need to feel good about doing something.

It's long disappointed me that the schools focus primarily on verbal/analytical skills while ignoring all the other types of achievements that contribute to a well-rounded world. That athletes like the young Mr. Edwards can lose their right to play from poor academic performance seems particularly bothersome...though I do understand why schools have athletic standards for players. It's become so bad in the schools that even children who learn differently (say, learning to read using whole language rather than the currently hyped phonics) feel the weight of teacherly disappointment as early as kindergarten.

How do you feel about Mr. Edwards' article and this subject in general? I'd love to read some other perspectives and experiences.

#11 What's up for summer?

2009-06-11T05:12:00.001-07:00

What sort of things do you do during summer to keep your child with autism progressing?

For us, summer is broken up by Extended School Year through the public school. Jack has qualified for the last three years because of his need for routine. Every break through the year leads to a week or so of readjusting to the routine of school. This year, summer school is the month of July from 12-2 on Monday through Thursday. Jack also has regular speech/OT/PT at Children's Hospital on Friday mornings.

For fun, he's going to go to vacation Bible school at our church one week, take a few classes/camps at the YMCA, and attend Junior Ranger Camp at our local state park for a week. A babysitter will attend all these activities with him, to provide the additional support and focus Jack needs.

We're doing a bit of summer homeschooling for both boys. Jack needs any opportunity to focus on undesired tasks he can get, so we're doing worksheets and writing and reading practice. He learns best with whole language (the schools focus on phonics), so I'm using leveled readers (checked out from the library), custom flash cards, and lots of praise. He also needs to practice handwriting (always a struggle) and counting. To motivate the boys, I created a star chart. For every twenty stars, they get a trip to Chuck E. Cheese. Lord, I despise that place, but it's really motivating them as planned.

For PT, we're going to our neighborhood pool as often as possible. Jack loves swimming--especially the "jumping into the water, climbing back out, and jumping in again" routine, which is great for building core strength.

Finally, we're taking on the summer reading club at our local library. I love the library, not only for the books but for the adventure of going each week and finding something new for the boys. They love it, it's free, and it's fun.

What are you doing this summer?

Growing up on the Spectrum

2009-06-04T05:35:00.000-07:00

No question this week, but I found an intriguing book at the library and thought I'd share.

Growing up on the Spectrum: A Guide to Life, Love, and Learning for Teens and Young Adults with Autism and Asperger's
By Lynn Kern Koegel, Ph.D., and Claire LaZebnik
Viking Press, 2009

These women authored one of my favorite books on treating the disorder, Overcoming Autism. I'll not likely have time to read their new book for a while, but if it's half as good as Overcoming, it'll be hugely helpful.

Has anyone read it already? Any reviews would be appreciated. Also, if you know other books on the subject for teens and young adults on the spectrum, please share in the comments.

#10 What's bothering you right now?

2009-05-30T04:33:00.000-07:00

What about autism is bothering you right now, this minute? Please let us know if you're at peace with it right now, too. Our feelings can change so rapidly from moment to moment: some moments are good, some not so much! That's okay, natural and expected, don't you think?

Right now, I'm fretting about attention spans. I saw Jack working with his wonderful aide on Wednesday and once again am struck by how difficult it is to get him to focus. (It's not just me...the aide couldn't get much out of him either!)

While I can usually stay in the moment with Jack, this issue has me wondering about the future of his education. Fact is, he's made enormous progress this year, so it shouldn't bother me. But it does. It makes me wonder if his aide next year will be as patient and persistent, as kind and gentleand creative. Will his teacher be as good? Oh, the uncertainty of it all, and the difficulty of trusting in Jack and God that it'll be okay.

Deep breath, Susan. Deep breath.

#9 What makes you smile?

2009-05-25T04:27:00.000-07:00

As you watch your child grow and develop, what things most make you smile?

My attitude toward Jack's progress has been, from the beginning, a joyous celebration of what progress we see. I don't compare Jack to other kids; I compare where he was and where he is now. Consequently, I see progress all the time. Sure, he's not reading or writing or telling stories like the "normal" kids, but he's making progress. In just the last week, he told a story (beginning, middle, and end) at the dinner table for the first time. It was rough, and he was recounting a scene from a movie, but he used spontaneous speech (interspersed with dialogue from the movie, of course). WOOHOO! He is also using longer sentences of spontaneous speech in general and is answering questions more often and with longer sentences as well. At the preschool end-of-year carnival, he managed to play for two hours before asking to go home. I was practically dancing as we left! At last year's carnival, he only made it twenty minutes before sensory overload hit.

I recently had a weird experience with a special education teacher. His special education teacher seemed really disappointed in Jack at the IEP meeting a month ago. Jack may not have met her expectations of progress, but he met mine. I sent her an email afterwards explaining how three years ago, Jack completely shut down at school, had no friends, wouldn't even touch a pair of scissors much less cut a straight line, wouldn't sit in circle time or at a table with other children, wouldn't talk at all, etc. He now has friends and interacts with all his peers (mostly appropriately), follows the class routine with minimal redirection, cuts shapes reasonably well, and talks to everyone (asking questions, answering them, etc.). So what if he has difficulty paying attention to undesirable tasks and won't take tests well? These are just the next things to work on.

The teacher appreciated my email and has seemed more upbeat since, but I really do feel that unrealistic expectations can crush any child--autistic or not. It's important to push and challenge all kids, but by paying attention to how the child is progressing--rather than standardized scores or curriculum guidelines--it's easier to find the positive in a child's development.

Besides, Jack is just funny. The other day, while talking to my mom on the phone, he dropped the phone into his lap. He picked up the phone and asked my mother, "Did I hurt you?" Bwaahhaaahaaa!

So what makes you smile?

#8 How was your initial contact with the school system?

2009-05-14T12:04:00.000-07:00

When you contacted the schools and requested an evaluation, how did the school respond? Did you feel that the school responded appropriately? Were the evaluations handled well? How hard was it to get your child's "educationally necessary" services in place?

For us, the biggest hurdle was the home visit. The child psychologist and speech therapist came to our home, where Jack is most comfortable. He acted so normal! By the end of the visit, the psychologist said she'd never seen a child with Jack's diagnosis act so social. The speech therapist said she could see some minor problems but nothing major. They wanted to return to our house the following week for more formal testing. I insisted they needed to see Jack at school instead. By law, one of the two visits must take place at school, so they didn't argue with me. But I just knew they were shaking their heads in disbelieve.

The school visit could not have gone any better, however. Jack completely shut down and became absolutely unresponsive to their best efforts to engage him. The psychologist said she'd never seen such a dramatic change of behavior, and the speech therapist told me that Jack had played her like a violin at our house, masking major receptive language problems by being totally in control. At school, where he was clearly not in control, he revealed significant language issues. She was proud of him for fooling her! We got maximum speech therapy, reasonable occupational therapy, and placement in the developmental preschool program.

#7 How Did You Cope?

2009-04-26T18:46:00.000-07:00

How did you cope with the diagnosis in the early days? Was it easy for you to accept or did you enter a state of denial? What did you do (if anything) to take care of yourself during that time?

For those of you who don't have a diagnosis yet but pretty much know your child is on the spectrum, how do you cope with being in limbo? What positive things help you? What definitely does not help?

I was surprised how readily I accepted the diagnosis--once I knew what PDD-NOS was. We knew something was different about Jack anyway, but all I knew about autism came from the movie Rain Man and a few news shows on savants. It took some research and reading to get to a general level of understanding, and that process didn't take very long at all. I did very little crying, I think because I'm generally an optimist and felt like it would all turn out well in the end.

What took longer was orienting myself to all the details...figuring out how I felt about various therapies, figuring out what therapies we were and were not willing to try, and trying to get a feel for Jack's particular progress. All that took time, attention, and the helpful advice of a good developmental pediatrician. I also had some wonderful friends who listened and supported me. One, a special education coordinator in a neighboring school district, was particularly helpful when it came to navigating the school's red tape and understanding the educational implications of autism for Jack's future.

As for taking care of myself, I made sure I did my hobby (papercrafting) at least several times a week. We had a good babysitter, and I made use of her during the day when my husband was at work or out of town on business. Those breaks kept me sane and prevented me from losing myself completely in this new world of the autism community. Whenever I felt myself getting obsessed with autism, I would go on a news black-out...quit reading all the books, quit surfing websites, quit talking so much about it. After a while, I'd jump back in feeling eager to start reading again.

Autism Awareness Month

2009-04-09T15:00:00.000-07:00

April is Autism Awareness Month. In Colorado on vacation, I saw a sign in the window of a wine shop promoting Montrose's inaugural Autism Walk. Pretty cool.

For those who find this blog and don't know much about autism, please visit Autism Speaks for good information on its signs, symptoms, and treatment. Also, read the comments on this blog. You'll learn a lot from the stories parents have shared here about the challenges and frustrations they endure every day.

The next time you see a child melting down in public, don't assume it's the result of bad parenting. The child may well be autistic. That parent needs your support and positive thoughts, not a judgmental frown or caustic comment.

The next time you see a child sitting at the playground running sand between his fingers for 30 minutes, don't assume he's being ignored by his parent. He probably needs a break, and the parent is giving it to him.

The next time you invite your child's classmates to a birthday party, remember that the kid in the class with autism might want to come, too.

The next time friends tell you that their son or daughter has autism, don't say, "I don't see anything wrong!" Instead, ask questions. Learn something new. Don't judge.

The next time you see a child with autism, say hello and smile, and don't feel hurt or insulted when he or she ignores you. Just keep smiling. The child notices, even if you don't think so.

The next time you meet a child with autism, don't assume he or she is just like your neighbor's child with autism. All people with autism are unique...just like all people without autism are unique.

#6 Do you tell people about your child's diagnosis?

2009-04-01T11:30:00.000-07:00

Please share your thoughts and feelings about telling versus not telling. Whom do you tell...everyone you meet or only very close friends and family? The swim coach and the Sunday school teacher? The person who's staring at your daughter or son at the grocery store? Obviously, the severity of your child's symptoms will weigh heavily in this decision, but what other factors influence your decision to tell or not tell particular people?

HERE is an essay I wrote about our approach to this subject.

#5 What are your favorite books on autism?

2009-03-24T17:21:00.000-07:00

My two favorites:

1. Overcoming Autism: Finding the Answers, Strategies, and Hope That Can Transform a Child's Life. Lynn Kern Koegel and Claire LaZebnik. This book combines an expert's recommendations and a mother's comments to make a very readable, smart book.

2. Helping Children with Autism Learn: Treatment Approaches for Parents and Professionals. Bryna Siegel. Dr. Siegel's approach to education recognizes that each child with autism has unique strengths and deficits, and she offers strategies for using the strengths to minimize or work around the weaknesses. Practical, useful, and packed with information, Helping Children with Autism Learn is invaluable to parents and teachers of children on the spectrum.

Another book that isn't really about autism but is on my list of top five nonfiction books EVER is Temple Grandin's Animals in Translation. I couldn't put this book down and plan on rereading it soon. Grandin has autism, which she feels gives her a unique insight into animal behavior. A blurb on the back cover, from Nature, says, "At times, it is difficult to work out whether this is a book about animal behaviour with insight from autism, or a book about autism that uses animal behavior to explain what it is like to be autistic. A major achievement of the book is that it is both." I totally agree.

Need a Laugh or Some Hope?

2009-03-19T07:44:00.000-07:00

My post on Questioning my Intelligence this week is about Jack and demonstrates his progress in speech. If you want a laugh (or some hope that speech therapy can work!), check it out HERE.

The examples I give of Jack's speech right now show several typical characteristics of speech development in autistic children: repetition, use of scripted language from tv/movies/parents for effective and appropriate communication, and the awkwardness of the emergence of spontaneous speech. Note how Jack's grammar is perfect when he works from a good script, but it breaks down when he's speaking spontaneously or writing his own scripts. He also demonstrates poor receptive language (understanding what is said to him), very literal understanding of language, and non sequiturs.

Although I don't give examples in this post, he has difficulty answering questions and will often ignore me if I press him to answer something that he either doesn't understand or doesn't care to talk about. He also uses scripted language (from his favorite movies) as a form of self-stimulation. He is learning to control his verbal stimming and limit it to "private time" rather than, say, as he is walking into school, but movie lines burst out at odd moments, particularly when he is transitioning or feeling stressed or bored.

Jack receives an hour of speech therapy a week (30 minutes at school, and 30 minutes privately). His improvement in the last three years is amazing, but he still has a long way to go.

Feel free to share your own experiences with language development in the comments!

#4 Who helped you the most in the beginning?

2009-03-18T19:55:00.000-07:00

Before I get to the question, I want to thank all of you who have responded either in the comments or by email so far! Each comment has meant so much, and I welcome any and all who read this blog to put in their two cents whenever you have something to say. (tinamarie, please send me an email from my profile page with your email address...I think that will give me your email address in return.)

Now, to the question. For me, the two who helped the most concretely early on were definitely the developmental pediatrician and the child psychologist who evaluated Jack. We only saw the psychologist once, but she gave me the most useful, specific piece of advice we got from anyone...to get Jack into as many structured social situations with typical children as possible and not to do ABA with him. (Note: she was an ABA-trained psychologist.) She recognized his strengths right away, and gave us a direction for using them to tackle the weaknesses. The developmental pediatrician was so responsive, answered all our questions from the MD perspective thoroughly, and helped navigate the military medical system for Jack's best interests.

For moral support and encouragement, our family and friends were such a blessing. A couple of them went into denial ("There's nothing wrong with him!"--they eventually came around), but most were hugely supportive, listened to me talk my way to understanding it all myself as I explained "things" to them, and gave me and George and Jack the love and support we needed. Many asked questions, which told me how hard they, too, were trying to understand what was happening. The preschool director at our church, Kim, placed Jack into a typical preschool class with a PhD in psychology as his teacher. She was one of many angels who smoothed our way to setting Jack up in his treatment plan.

I remember reading horror stories of families falling apart or becoming estranged over autism, and of discrimination and lawsuits, and was terrified we would experience something like that. Praise God we didn't, but my heart goes out to those who were not as fortunate as we were. The beginning of this journey is so scary and so overwhelming, and I will be eternally grateful that there were so many people who said or did the right thing at the right time, or who just listened and responded with love. As cheesy as it may sound, they are a big part of the reason I want to write a book that pays their compassion and love forward.

So, who helped you the most in the beginning?

#3 What surprised you the most about autism in the beginning?

2009-03-12T07:10:00.000-07:00

How did you overcome/deal with your surprise?

For me, the biggest surprise was the lack of a protocol for treatment. When I was dx'd with gastric ulcers, the doctor had a specific protocol to treat them. Ditto with my gall bladder. But for autism, a brain disorder, there was no protocol. I now completely understand why there isn't a protocol in place. Every child with autism is so different that no one therapy or protocol will help all children. Also, some things that we do now as "therapy" for Jack are really normal kid things, like gymnastics and school. I felt like we should be doing something more... I don't know... unusual!

It was left entirely up to me and George to decide what to do, and much of what I read left me more confused than before. The developmental pediatrician and child psychologist gave good guidance, but in those early days, I was really too ignorant to understand much of what they said or why they said it. The big picture did come together as we started doing "stuff," but I felt really lost and directionless at first--a very unhappy feeling.

Appendix C of The Autism Sourcebook helped a bit because it lists all treatments alphabetically and says what aspect of autism each treatment addresses. (The rest of that book totally freaked me out, though!) In retrospect, I really wish I'd read Overcoming Autism then. That book would have been a huge help, and it's my number one recommendation for anyone who's just starting this journey or feeling lost on it. Huge thanks to Karen D. for sharing that one with me!

#2 How easy/difficult was it to get the evaluations your child needed for a diagnosis?

2009-03-05T04:23:00.000-08:00

What evaluations were done and by whom? How accurate and well-performed do you think the evaluations were?

In our case, I took Jack to a regular pediatrician (who turned out to be a student!) at the Wright Patterson AFB hospital and explained very calmly what we were concerned about and what his teacher was concerned about--I thought about what I was going to say ahead of time and made sure that I was clear and concise. At this point, I had no idea that autism would be a possibility, but in retrospect, I said all the right things to get the doctor's attention. That doctor asked me to wait and brought the developmental pediatrican into the discussion that day, which I felt was extremely responsive. The developmental pediatrician, Dr. Z, said he would work Jack into his schedule as quickly as possible; he saw Jack two weeks later for an initial evaluation. It took just three months to get all the evals done: audiology, speech, occupational therapy, child psychology. At the time, Dr. Z didn't have the testing materials for the ADOS, so we went downtown to Dayton Children's, where the child psych did the ADOS and nonverbal IQ test.

I felt all the tests except the speech eval were quite thorough and well done. The speech eval was done first and every specialist who saw it (including at the public school!) rolled their eyes at it. It basically said nothing. All the other therapists and the child psychologist were extremely good at explaining the results of their evaluations. Once Jack got into treatment, his new speech therapist did a very thorough evaluation so we had a much better idea of where Jack stood.

Much of our luck came from cancellations (speech and child psych would have taken MUCH longer, but I jumped when cancellations occurred) and the fact that Dr. Z knew how to pull strings and did so on our behalf. We were getting ready to move to Abilene, TX, at the time, but the doctor said services were better in Ohio, so he and my husband signed us up for the Air Force's Exceptional Family Member Program, which ensures that families with special needs are stationed in places where those needs are met. You can read the details in my essay HERE, if you're interested. (Scroll down a bit to get to the part about Jack's diagnosis.)

Jack's final diagnosis was Pervasive Developmental Disorder-Not Otherwise Specified, or PDD-NOS, mildly affected. By the time the diagnosis came through, George and I were both convinced that it would be PDD-NOS anyway, so we were not surprised.

Note: The public schools did not get involved until we had a diagnosis, mainly because of the timing of summer break.

#1 What made you first suspect your child needed to be evaluated?

2009-02-25T12:21:00.000-08:00

For us, it was Jack's behavior at preschool when he was three. At home, he seemed reserved and "good," but at school, he shut down and refused to cooperate with teachers, to sit in circle time, to play with other children, or to acknowledge their greetings. At the end-of-year parent conference, his teacher said that while he was making progress, he wasn't closing the gap with his peers. I called to schedule an appointment that day. I later learned that many early warning signs of autism showed up very early with Jack, but because my husband and I didn't know what they were, we had no idea they meant anything at all.