Feeling Lost in the Forest

At Cooper’s annual comprehensive eye exam today, the optometrist said he was having some difficulty tracking. 

She explained that he turns his head to look at things, rather than move his eyes and use his peripheral vision, and gave me handouts that listed about 20 different exercises that we were to do at home, for at least 15 minutes a day.

I get the time commitment; I had vision therapy myself at Cooper’s age and again in my mid-20s, which is how I know that he has to be willing to do the exercises with me for them to be effective.

There were five handouts, each densely packed with activities. Just for once I wanted to be a “C” student, not an overachiever.

I asked if someone could demonstrate how to do the exercises so I’d know if we were doing them properly, especially since Cooper has difficulty taking direction from me (maybe because I’m his mom, not his therapist?), and was told that there wasn’t time to do that.

The optometrist noticed that I was feeling overwhelmed, and reduced the homework to one handout, with four simple exercises. The other activities, it turned out, were for when Cooper had mastered the first level (I hope to see that day!).

Then she recommended I bring Cooper back for a follow-up appointment in six to eight weeks, which is when I snapped.

I think she was expecting me to nod my head enthusiastically and say, “Of course!” with a huge smile.

Instead, I blanched, and said, “Six months. We can return in six months after doing these vision exercises.”

She said she needed to put in the notes that the patient should return in six to eight weeks.

I explained that I needed to have him do the exercises consistently for four weeks, and then schedule a follow-up, and that would certainly be more than eight weeks from today since we also need to start doing his oral-motor exercises and get him acclimated to his back brace to treat his early-onset scoliosis.

I added that if she puts six to eight weeks in her notes, then the person booking the appointments will tell me I was supposed to come in sooner when I call in a few months. I said I didn’t like being told that, since it made me feel like I am a bad mother.

And then I realized what was really on my mind. It wasn’t this doctor, nor was it this particular problem (after all, it isn’t unusual for an 8-year-old to have difficulty with tracking).

It’s that rarely a month goes by that Cooper isn’t evaluated by or taken to a follow-up appointment with one specialist or another, and no one has yet to recommend a quick, inexpensive fix that doesn’t require any action, effort, or oversight on my part.

Many times I feel as if I am the only one in Cooper’s universe of therapists, teachers, and doctors who is cognizant of each and every part of him that needs repair. (My kind, patient and loving husband is certainly in the loop on everything, and is as involved as he can be; there just seems to be an endless refrain of “We should be doing more of X” in my head).

The list of issues and challenges and difficulties and insufficiencies and inadequacies seems to get longer as he grows older:

Hypotonia (low muscle tone), which affects his

- eyes (weak ocular skills), so we’ve been given vision exercises to do at home;

- mouth (weak oral motor skills), so there’s a specialist and regimen of daily exercises that I need to implement this week;

- handwriting (weak core/abdominal muscles);

- overall energy and stamina (sitting up all day at school is hard work for his weak core, so he’s tired when he comes home from school, and gets upset when asked to do homework that requires him to do any writing), so he’s more willing to do homework assignments if I type what he says.

He also has issues with motor planning and eye-hand coordination, so sports aren’t high on his list of preferred activities. Actually, they’re on his permanent “No, thank you” list.

Autism affects his ability to cooperate and participate in the vision and oral-motor exercises.

Being on the spectrum also increases his resistance to engage in physical activities after school and on the weekends that most kids enjoy, whether it’s riding a bike or just spending time at the playground. (I am grateful that he eagerly joins his classmates for recess at school.)

He has sensory issues that affect his interest in food (he finds many smells offensive) and his taste buds. He's a picky eater with a short list of acceptable foods, and says that most food “tastes odd” to him (this is after he has decided to try a new food, which happens about a handful of times each year).

So Cooper’s plate was already full when we went to the orthopedist yesterday to have his spine X-rayed and assessed.

Scoliosis runs in my husband’s family, so this has been in the back of our minds from Cooper’s infancy, but I was impressed that my globally delayed son had achieved early onset of this spinal disorder.

After that doctor prescribed a back brace, to be worn 18 hours a day, I turned to Cooper and said, “How much do you want that Wii U you’ve been saving up to buy?”

This brace might be worn for as few as two years or as many as 11, since Cooper is likely to continue growing until he’s 19, and the goal of the brace is to maintain his current 32 degree curve and avoid having to do surgery on his spine.

Since I’m trying to be as blasé as possible about having to wear a brace, I told him that there are things that we need to do to take care of our bodies, and that we don’t always have a choice about what those things are. I reminded him about my colostomy (not the near-death part of it, of course!) and said it was gross and something I couldn’t really forget about, and wearing the brace is something he will eventually get used to and it certainly won’t be gross like a poop bag.

I try to focus on the improvements, the gains, the new skills mastered—and then the bar gets raised, again and again.

So today, in the spirit of welcoming a new year and celebrating Rosh Hashonah, and reflecting on the past one, I’m going to set aside all the suggestions and “To Do” lists and notes from doctor’s appointments.

I’m going to cherish Cooper’s spirit and sense of humor, and ability to surprise me, whether it’s getting on a boogie board at the beach and loving it or riding a roller coaster by himself at LEGOland last week.

He’s growing up, and he’s going to be fine.

Delusions of LEGOs

Yesterday I was woken up by an irate child at 4:13 a.m. The issue: where was the new LEGO toy we'd gotten at the LEGO store the night before?

Cooper didn't like the answer: the toy he was thinking of hadn't been purchased after all, and what we did buy was already on the living room floor, ready for him to assemble.

He seemed to have a different memory of what happened during our trip to the LEGO store, and no amount of clarification on my part could mute his hysteria.

He insisted that he was right, and I was wrong. "You don't have a good brain, Mommy!"

I wasn't surprised that Cooper was having a meltdown because he'd been impressively flexible the day before at the LEGO store, so now it was time for payback.

He wanted to buy two Star Wars LEGO sets that had been released on January 1. He'd been saving LEGO gift cards he'd gotten from his birthday last summer and was combining the amount with a gift card he'd gotten for Hanukkah. The sets, however, were already sold out in the store, so a nice employee helped us place the order online.

But this meant that Cooper would have to wait for another week before his new LEGO sets arrived, and his hope in going to a LEGO store was to have immediate gratification.

While waiting for the order to be placed online, I found a Ninjago keychain and asked him if he'd like it to replace the LEGO zipper pull that broke.

Then we learned that my LEGO VIP account had a $10 credit that could be redeemed anytime, and Cooper still had about $5 left on one of his gift cards after buying the Star Wars sets.

So he found a few sets in the $9 to $11 range, and then decided to peruse the new Legends of Chima sets he'd been reading about on Brickset (a website for LEGO fanatics). These sets were also released on January 1, and a lot of thought went into his ultimate decision to choose two Star Wars sets with his gift card money.

After we discussed the merits of various sets, he zeroed in on Legends of Chima:Target Practice, which, at $14.99, was within his budget.

Then I saw that another set, Legends of Chima: CHI Battles, had two mini-figures as well as two Speedorz (mini-racers that appear similar to the Beyblade); whereas the Target Practice set only had one mini-figure and one Speedorz. The CHI Battles set was $19.99, so I offered to give him the $5 to use toward that set if he chose not to get the Ninjago keychain.

We talked about how the CHI Battles set would be more fun to have when a friend is over.

I thought Cooper agreed to get the CHI Battles set, and he was excited when the employee we'd been working with gave him a free LEGO Legends of Chima: Ewar'sAcro-Fighter set (an exclusive polybag item being offered when your total purchase is more than $75).

For Cooper , these decisions carried as much importance as the process an adult might undergo to, say, buy a car. He had been thinking about his choices for at least a month, and factored in the sales tax when determining if an item was within his budget. He also knew he'd be responsible for shipping and handling charges if he ordered the sets online, so his preference was to go to the store in person (whereby his parents incurred transportation costs such as gas and tolls!).

Cooper was excited when we left the store, and agreeable when we stopped at a few other stores before we got in the car around 7:30 p.m. to head home. 

Despite it being a half hour past his usual bedtime, he was wide awake in the car on the drive home, talking about his new toys. I told him I'd get everything ready on trays for him to put together in the morning when he woke up.

The next morning, however, he had no memory of these negotiations and instead was convinced that he had been wronged.

His shrieking went on for a few minutes, and none of my usual tactics could calm him.

Soon Marc was up as well, wondering why there was so much noise at that hour.

Then Marc started to say something well-intentioned about how there are many children in the world. I knew where he was going with that (there are children who don't have any toys, so Cooper is lucky, etc.) and could tell that Cooper wasn't going to be able to see the forest past the trees at that moment.

Cooper was stuck on the notion that there was a missing toy, and when he gets stuck, watch out. It can take an hour to get him to let go of the thought that is vexing him. A long, painful, exhausting experience that sometimes compels me to eat frozen brownies or cookies afterward just to have something sweet and pleasant (emotional eating, I know, but let's not get into that now!).

I didn't know what to do to stop the meltdown, so I picked up a Speedorz and tried to play with it, and commented that Daddy didn't know how it worked. At that point, Cooper was able to shift his focus and snatched the toy out of my hand to demonstrate how it actually worked (since I obviously didn't know what to do), and then, as if a switch had been flipped, our happy child was back.

We left him in the living room and returned to bed as soon as we could, wondering,

"What the heck was that all about?"

I honestly don't know. I think it's part of Cooper being on the autism spectrum, since he was having trouble controlling his emotions. He was really flexible and accepted that the Star Wars toys would be coming in the mail in a week, and something snapped when he was sleeping -- maybe he had a dream that he'd gotten the other Legends of Chima toy? -- and he woke up snarling.

As parents, the episode was a reminder that, with autism, wherever you go, there you are.

And some mornings are just better than others!

-- by Amy Debra Feldman

Summer Camp Blues

Happy holidays!

For many of us, 'tis the season for putting on jackets, gloves and scarves before heading outdoors.

And yet I'm getting reminders that summer is just six months away. Yesterday I got an email from the camp that Cooper attended last year, offering a discount for early registration.

Which got me thinking: Did he have a great time there last year? I'm not so sure. He came home happy enough in the afternoons, but after the two weeks were over the real story came out. 

Staff members and campers alike were "rude," he said. He gave me examples of behavior that was, in fact, rude and not respectful (teasing, pushing, calling names, etc.). 

Moreover, it seems that some of the kids in his group were jerks, and his counselors weren't helpful in getting these kids to behave better. Is that too much to expect from a high school or college student in a leadership role?

Perhaps.

But I always felt that kindness and respect were valued at Jameson Ranch Camp, where I spent three wonderful summers growing up, so I know it's possible for a camp to have a positive, respectful environment. (There were no "exclusive relationships" allowed at this family-owned and operated camp, where everyone -- including the 6-year-olds -- had a job on the working ranch and we lived by the saying, "You get out of camp what you put into it.")

Jameson isn't a viable option for Cooper right now; it's in California and we live in New York, and it's a sleep-away camp -- which he isn't ready for yet.

But they seem to know what they're doing there in hiring staff and encouraging good behavior among campers, so I perused the camp's website and came up with some questions I'll be posing to camp directors before writing any checks:

1. What are the expectations of staff members? How are they communicated (e.g. in the job application and/or staff handbook)? 

Ideally, a counselor should be expected to be a positive role model and create a positive community. A counselor should also be expected to exhibit the following values: honesty, integrity, respect for himself or herself, and respect for others.

2. Are staff members subject to a criminal background check? A driver’s license check?

3. Are they subject to testing for drug use?

4. Are they encouraged to be cheerful and energetic with the campers?

5. Is offensive language permitted?

6. What are the expectations of the campers, and how those are communicated and supported at camp? Are they explicitly told to keep their hands to themselves, and that there's no teasing or calling anyone names?

For example, if a counselor overhears one camper insult another, would the counselor say something along the lines of, "I think that upset X's feelings. Is there something going on that's bothering you?" 

--

We're fortunate that Cooper's school excels at doing what's called Positive Behavioral Interventions and Supports (PBIS). In fact, the TA Center on Positive Behavioral Interventions and Supports (established by the Office of Special Education Programs, U.S. Department of Education) has a whole manual on preventing bullying behavior in elementary schools.

"Everyone at my school is really well-behaved," Cooper says.

Is it too much to want the same at summer camp?

Yes, I'm Paying My Kid to Eat

I use money liberally to reward and create incentives for Cooper.

(Go ahead, think what you want about my parenting skills. But please just read this first, and then sit with my child and patiently try to get him to expand his palate, night after frustrating night.)

We used to dole out toys (Thomas the Tank Engine trains and vehicles from "Cars" and "Cars 2" were frequent incentives used during the toileting process) but now that he's into LEGOs, there's only so much in the $4.99 and below price point that a company can manufacture during any given year.

So that leaves cash. Which I favor since delivery requires neither payment of sales tax nor shipping and handling charges.

Marc and I are grateful to Cooper's wonderful team at school for supporting our efforts to expand his diet beyond pizza, chicken nuggets, and Annie's Shells.

Since he responds well to incentives, somehow I managed to promise him $20 if he does good cooperating and participating when someone from his team (usually the occupational therapist) offers him a new food at school between mid-May and the end of the school year in June. This averages out to about $4 per week. I don't know if that's a fair amount. It's hard to get a sense of how much is fair when most people don't have to pay their kids to eat. 

Such is life with Mr. Happy-Go-Lucky, my favorite special needs kid.

We did a lot of this food exploration business last year in kindergarten. He'd eat a food at school (I don't know if that meant he took one bite or 25) and then refuse to eat it again at home. So we had a big gap between what he'd do in one place vs. another (the technical term is carryover, which I think is a neat word).

Or he'd eat 1-3 bites of a new food at home, profess that he liked it, and then refuse to eat it anytime it was subsequently presented to him.

This one step forward, 45 steps backward thing of his makes my life fun.

So I'm trying to encourage carryover by paying him to eat a food multiple times. For example, if he eats a portion of a new food (such as an entire piece of bread), he gets 25 cents the first four times he eats the new food.

We're on Day Three of this program, and I realize now that I forgot to credit him for the bowl of Annie's Shells that he ate tonight ("real aged cheddar" is a different flavor from his standby favorite of white cheddar, so it counts as a new food).

This is a child who will eat only ONE BRAND of ONE TYPE of strawberry yogurt. This particular brand is of course no longer sold at the convenient grocery store down the hill from us. Fortunately he has agreed to allow another brand of strawberry yogurt to cross the threshold of his mouth without protest. This brand is available at the convenient grocery store down the hill. Maybe in a year he'll agree to try regular yogurt (not the kid-branded stuff such as YoKids or Danimals Crushers). A girl can dream.

We have spent hours trying to figure out why he is such a picky eater. There's the autism, sensory issues (foods have texture, smells, temperatures, and of course, tastes), and low muscle tone problems that made it difficult for him to even use his mouth to chew and swallow.

Typically developing children usually imitate others, especially their parents, and therefore have an interest in what is on a parent's plate.

Not in this house.

Instead, we have a delightful person who appears to not want to try anything out of fear that he won't like it and there will be an unpleasant taste in his mouth afterward. At least that's what we've surmised, since he gets upset when we try to ask him about anything involving food and his preferences.

Apparently, it's not unusual for kids with ASD to refuse to try new foods, insist on eating a limited number of foods, have rules about how the food must be presented on the plate (such as not touching), be selective in what textures they'll eat, and cause disturbances during meals.

I'm guessing it's also not unusual for parents of kids with ASD who exhibit some or all of the above behaviors to want to cry in frustration. At least this one does.

The concept of a meal being a fun communal experience with one's child is shattered when said child loses interest in trying new foods at 20 months and protests by coughing, batting away the spoon or fork, or throwing the food onto the floor.

In Cooper's case, we did an oral-motor evaluation when he was 25 months old and learned that he exhibited open mouth posture with drooling and had decreased muscle tone in tongue. He was unable to swallow liquids from a cup with lip closure or do at least three suck-swallows in sequence when drinking without pausing.

He was also oral-defensive, meaning he’d scream bloody murder if you tried to touch his cheek, let alone put a toothbrush inside his mouth.

The evaluation also noted an intermittent diagonal rotary chewing pattern (whatever that is, it must be important). At the time, Cooper didn’t use his tongue to clean food from the upper or lower lip. (Um, gross, but not his fault because the weak muscles in his tongue needed to be taught how to move around his mouth and do a better job of tongueing.)

I've lost track of how much money we've spent buying food for him to try that he just rejects and we then have to throw out. I know we've spent at least $1,500 on oral-motor therapy and special products to help strengthen the muscles in his mouth, which is a lot of money but was absolutely necessary because he deserves to have a chance to have functional muscles in his mouth, even if he despises the process by which he acquires them.

It's hard to get excited about the progress, because we never know if it will continue.

That said, we had a good week: he tried a new cereal (Cascadian Farms Chocolate O's) and gobbled down an entire box of Annie's Shells & Real Aged Cheddar (good stuff, I have to say. I got the stink eye when I had a small bowl myself!).

Maybe one day my kid will eat
- a banana
- an apple
- a sandwich (even a cheese sandwich!)
- a real piece of chicken that isn't a nugget or a tender
- a carrot
- a salad (the flavors!)
- a steak
- an egg (any form, as long as it's cooked)

I'll keep you posted!

Overjoyed About Autism (Seriously!)

Today is World Autism Awareness Day, so I thought I'd share how we figured out that Cooper is on the autism spectrum. For us, it was actually wonderful news!

When Cooper was 11 months old, a pediatric neurologist diagnosed him with hypotonia (low muscle tone) and global developmental delays. We soon entered a world of specialized therapies to help him with his fine motor skills (such as holding a crayon), gross motor skills (such as walking or jumping) and his speech and language skills.

After his third birthday, he began speaking more and using increasingly longer sentences. Halfway through that year, he began attending a mainstream preschool with a special education teacher as his shadow to give him cues and foster interactions with the other kids. All of a sudden, there was a burst of speech.

At first, Marc and I were ecstatic. Cooper was finally talking! A lot! We’d waited so long for this to happen.

And then we started listening. And wondering what the heck was going on with him.

There were tantrums. Dozens a day. The only pattern was that this child was consistently furious at the world.

Something didn’t seem right to us. Weren’t kids supposed to have fewer tantrums as they got older? He was edging toward turning 4, not entering the terrible 2s.

He was increasingly rigid and oppositional about many things, particularly things that shouldn’t concern him. One day I parked the car on a different street when taking him to a physical therapy session. “You can’t park there. There is no crosswalk. That is a big problem. YOU CAN’T DO THAT!”

If we tried to walk somewhere using a different route, he’d refuse and would often buckle his legs in protest.

He was often upset when certain things weren’t “right.” For example, he’d tell us that the wall is cracked or the toy is broken and then sometimes refuse to interact with something he perceived as “damaged” (i.e. a book with a torn cover—“You can’t read that book. It’s broken. Put it down!”).

His insistence on being “right” was interfering with his social interactions. One day, he and another 3-year-old boy were playing at our house. The boy took a plastic car out of the box overflowing with various vehicles and said, “I’m getting a race car.”

Cooper replied, “That’s not a race car. It’s a race truck. It’s race truck. It’s not a race car. It’s a race truck.” The other boy just continued to play with the car and didn’t respond.

He would have a tantrum if served cereal in a bowl that wasn’t his favorite “Thomas the Tank Engine” bowl (“You used the wrong bowl! That bowl is dangerous!”) and would throw the bowl with cereal and milk onto the carpet.

He’d get upset if the “wrong” parent served him breakfast.

One day there was too much water in the bathtub. Another day there was too little water in the bathtub. Then the water in the bathtub was too warm. Or it was too cold.

Once I took the newspapers out for recycling and was reprimanded: “Daddy will be so upset! You can’t throw out Daddy’s papers! Stop that this instance!”

It was beyond maddening.

He was also inconsistent (and still is) in responding to hearing his name; at the time of his diagnosis, he wouldn’t respond in dangerous situations such as running down the sidewalk, away from me or Marc.

He would get anxious and stuck on a topic, asking the same question over and over again.

He had, and continues to have, difficulty maintaining eye contact and greeting others with “Hi” or “Good-bye” without being prompted.

He rarely imitated us and wasn’t engaging in much pretend play with his peers.

More troubling was that he was exhibiting self-stimulating behavior such as spinning in circles and grinding his teeth.

One day I sat down with the diagnostic criteria for autism spectrum disorders and realized that I could match almost all of the criteria with examples of Cooper’s behavior, based on the reports from his team of teachers and therapists.

So we took him to the Seaver Autism Center for Research and Treatment at Mount Sinai School of Medicine in New York to be tested.

Although this type of testing can easily cost thousands of dollars, we were able to pay in blood. Literally. The center was doing a study on the genetics of autism, and as part of that Marc, Cooper and I allowed them to draw a blood sample for this international study.

In exchange, the doctors there did tons of testing, including an IQ test (his cognitive skillls are fine—yay! Honestly, he scored so low on a number of cognitive assessments before then, plus his speech was so delayed, that we didn’t know what was going on inside him).

They also did the Autism Diagnostic Observation Schedule (ADOS) and the Autism Diagnostic Interview, Revised (ADI-R). The ADOS testing sessions were videotaped and then peer-reviewed by psychologists who’d received specialized training in interpreting ADOS results.

By August, just after his fourth birthday, we had our answer. Cooper was indeed on the autism spectrum. He has some rough edges that need to be smoothed out but he is a person who really, really wants to learn and is capable of doing so.

For us, knowing he’s autistic means everything and nothing. It means everything in that we now a whole shelf of books that can give us some answers, reassurance and techniques for coping with his quirky behavior.

At the same time, it means nothing. It doesn’t change how we see him or how much we love him. He’ll always be our adorable, funny, magical child.