Wednesday, December 30, 2009

#25 How do you take breaks?

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!

Monday, December 7, 2009

#24 Holiday Stress and Joy

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?

Saturday, October 31, 2009

#23 Does your child react to Halloween?

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!

Tuesday, October 20, 2009

#22 Classroom Volunteers, Parents at Therapy Sessions

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 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?

Sunday, October 11, 2009

#21 How do you deal with stims?

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'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?

Friday, October 2, 2009

#20 Coping with Uncertainty

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?

Tuesday, September 22, 2009

#19 Siblings with Greater Risk of Problems

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?

Wednesday, September 2, 2009

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

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?

Monday, August 17, 2009

#17 Is Progress Ever Frustrating for You?

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.


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?

Tuesday, August 4, 2009

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

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.

Friday, July 31, 2009

#16 What is one of your amazing moments?

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?

Friday, July 24, 2009

#15 Am I the Only One?

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?

Sunday, July 19, 2009

#14 What causes the most stress in your life?

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'....

Thursday, July 9, 2009

#13 Changes in Behavior

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.


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?

Tuesday, June 23, 2009

#11 How does your child travel?

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?

Thursday, June 18, 2009

Athletic Achievement Can Help ADD/ADHD

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 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.

Thursday, June 11, 2009

#11 What's up for summer?

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?

Thursday, June 4, 2009

Growing up on the Spectrum

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.

Saturday, May 30, 2009

#10 What's bothering you right now?

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.

Monday, May 25, 2009

#9 What makes you smile?

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?

Thursday, May 14, 2009

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

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.

Sunday, April 26, 2009

#7 How Did You Cope?

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.

Thursday, April 9, 2009

Autism Awareness Month

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.

Wednesday, April 1, 2009

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

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.

Tuesday, March 24, 2009

#5 What are your favorite books on autism?

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.

Thursday, March 19, 2009

Need a Laugh or Some Hope?

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!

Wednesday, March 18, 2009

#4 Who helped you the most in the beginning?

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 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?

Thursday, March 12, 2009

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

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!

Thursday, March 5, 2009

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

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.

Wednesday, February 25, 2009

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

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.