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Aug 17, 2011

The Mid-August Meltdown (of mine)

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While I’m spending the week trying to balance having two young girls home with me and somehow sleeping during the day (thanks mom and Aaron for the help!), I’m also keenly aware that the school year begins again starting next week.

I’m always on the verge of a panic attack before the first day of school. Last year, it was due to my disappointment that Cordy wouldn’t be in a mainstream kindergarten class, wondering if she’d miss out and never get the chance to prove she could hold her own with typical peers. It wasn’t a plan I was happy with, but it turned out very well thanks to a teacher who immediately saw Cordy’s potential and a school that is apparently completely caught up in Cordy’s charm. She was gradually introduced to the mainstream class during the year until she was spending nearly half of her day with them.

This year, my sweet Cordelia gets her chance. She will begin homeroom each day by checking in with her special needs teacher, but will then spend (hopefully) all of her school day in a mainstream classroom. This school has never had a split first/second grade classroom (a mix of both grades in one class, with the teacher teaching to individual levels), but this year Cordy will be a part of this special class, and I can’t help but wonder if this class was designed with her in mind.

In our meetings last year, there was a lot of uncertainty about what to do with our smart but socially limited child. If she remained in the special needs class, she’d get individualized academic instruction, but would lack the challenge of learning to survive in a neurotypical world.

If she went to a mainstream first grade, we’d be faced with two options: let her follow the first grade curriculum – a curriculum that her teacher tells us she’s already mastered in kindergarten – or send her to a second grade class for the subjects she’s strongest in: math and reading. The first of those options would leave her bored and therefore prone to act out, and the second option would involve so many transitions from classroom to classroom during her day that we’d be setting her up for failure.

It was during all of these discussions that Aaron and I were strongly considering pulling her out of public school and exploring the idea of a Montessori school. Sure, we’d have to sell a kidney to pay for it, but at least then she’d have an option that had the best chance for success on both the academic and social/emotional fronts.

And then at the end of the year Cordy’s teacher offered up the solution of the split class. She’ll be able to work at a second grade level academically if she’s ready for it, but socially she will have first grade level expectations placed on her. The teacher for this class is well regarded and is already familiar with Cordy. (Her son was a typical peer in Cordy’s preschool class.)

Like I said, it’s as if they designed this class for my daughter.

I took Cordy to the school last week to visit with her special needs teacher, and she discussed this year’s plan with Cordy. I can already tell Cordy is nervous about the change; it’ll likely take a few weeks for her to adjust to this new routine. The teacher walked her to her new classroom, showing Cordy that the two classrooms are just a few doors away from each other and reminding her that she can come visit her special class if she needs a break.

Still…I’m nervous. I want this to work. My heart aches at the thought of Cordy struggling with the social norms of a typical class (what if the kids don’t like her, or worse, what if they tease her?), but I know it’s what she needs to do. Every day I want to wrap her up and hide her away from everything that frightens and upsets her, but I have to draw on my own strength to reassure her and then send her out to face her fears, repeating the process whether she succeeds or fails, over and over again.

Ever since we received the autism diagnosis, I’ve hoped that Cordy could have as normal of a childhood as possible, including an education in a mainstream classroom. She’ll always be eccentric – I wouldn’t expect anything less from my child – and it’s likely she’ll have trouble fitting in. Even if she can’t blend in with the crowd, I want her to better understand how that crowd works and how to work around it.

So I’ll likely be an anxious mess for the next few weeks as we see how well Cordy adapts to her new class. We’re lucky that she has a lot of people interested in seeing her succeed, including those directly involved with her education. It also helps that the kid has a track record for rising to the occasion when needed, and we’re hoping this experience is no different.

Filed Under: Autism, Cordy, growing up, love, school ·


Jun 14, 2011

And Exhale

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Yesterday was the first day of summer camp for Cordy and Mira. I worried Mira would have trouble adjusting to a new location that wasn’t her normal preschool. I worried that Cordy wouldn’t be able to cope with the demands of being in the older kid class this year, and that her teachers wouldn’t know how to handle her or wouldn’t like her.

Thankfully, most of that worry is now gone.

They both had a great first day. Mira’s teachers said she’s a ball of energy and fun to be around. Although she started the summer by putting a few well-placed gashes and scrapes into her leg on the playground that morning, she still kept a smile on her face throughout the day. Seeing how she’s such a social butterfly, I have no doubt that she’ll be running her class before the week is over.

At the end of the day, I found Cordy on the playground away from the other kids, laying on a bench and holding a ball. Her teachers reported that she was great all morning, and then a little difficult to deal with in the afternoon. She looked tired, they said, and I can believe she was. A new environment is very stressful on Cordy, so it’s likely she hit her sensory threshold by midday. But they handled her the best way possible – they gave her some space and let her rest for a little while.

She was also very thirsty, probably from not drinking any of her water in the water bottle we’re required to send each day. While I understand their reasoning for asking that kids only bring water (other than lunch), we’ve had this battle of wills with Cordy in the past and she will pass out from dehydration before drinking water. We may have to start spiking her water with a splash of juice to convince her to drink it. I’d rather she drink an ounce of juice in 10 ounces of water rather than drink nothing at all.

But the artwork in her backpack proved that Cordy didn’t mope all day. There were beautiful, full-color drawings of people and animals, and she made a series of flags with each one containing a drawing of one member of our family. (OK, the cats all had to share a flag.) I’m not sure how well she interacted with the other kids, but at least she enjoyed expressing herself artistically.

As we drove away from camp, I asked the girls if they had fun. They both said yes. And then I asked if they wanted to go back tomorrow. They again both answered yes. (Which is a rare moment for Cordy! She generally never wants to repeat something that is new to her.)

I am now cautiously optimistic that they’re going to have a great summer.

Filed Under: Autism, Cordy, daily life, growing up, Mira ·


May 20, 2011

Looking Ahead To Back-To-School

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We’re less than two weeks away from the end of the school year in our district. While I should probably be focused on what on earth I plan to do with my children during the summer months (answer: summer camp for most days), I’m actually already looking ahead to the next school year.

Cordy started kindergarten in a way that I wasn’t all that happy with. I had big hopes that she would be deemed “ready” to be placed in a mainstream kindergarten class, having conquered the difficulties brought on from autism.

I occasionally have to remind myself that autism is for life, and many of the challenges it can cause don’t vanish into the mist with a little therapy.

So I grudgingly agreed with the school assessment that she should be placed in a special-needs classroom and given some “inclusion” time with the typical kids. I feared it would mean that she wouldn’t get much time in the other class and would only drive her further away from normal.

I’ll admit I was wrong. Cordy has done very well in her class this year. Her teacher has put in a tremendous amount of work to help her cope with social situations, coach her through her anxieties, and encourage her to spend time in the typical kindergarten class. She’s coaxed Cordy into showing what she knows academically (Cordy is very shy about demonstrating any talent), sharing that she can read at a second grade level and will likely qualify for the gifted education program. And Cordy now spends up to half the school day in the mainstream classroom with few problems.

Why am I concerned with next year then? Easy – I’ve been anxious over determining where she belongs next year.

Cordy is academically advanced for most first grade subjects. Letting her go to a mainstream first grade class would challenge her socially, but would mean she didn’t get the academic challenge she needs. On the other hand, keeping her in a special-needs class would guarantee more specialized academic education, but she wouldn’t get the social challenge she needs.

It’s a dilemma.

Luckily, Cordy’s amazing kindergarten teacher may have come through for us again. She told us that one teacher will have a “split” class next year, meaning it will be made up of a mix of first and second grade kids. Her suggestion is to have Cordy attend that class, while still staying on the homeroom roster for the special-needs classroom.

Here’s how it would work: Cordy would check in with her special needs teacher each morning, then go to class in the mixed grade classroom, where she’d get both the social challenge of being with typical peers and the academic challenge of being in a class that also has second graders. She would be a member of that class, but if she had any problems she could go back to the special-needs class for however long was needed to address the issue that day.

On paper…err, e-mail…it appears to be a fantastic option. I’ve asked to meet the new teacher and hope to do so in the next week to finalize the details of this plan. To say that I’m thrilled that a split class has been formed would be an understatement. A mixed age group is exactly what Cordy needs – ideally, we would have sent her to a Montessori school, but private schools are outside of our budget.

Of course, a lot of the credit for getting this plan in place has to go to my sweet, hard working, preternaturally charming Cordelia. It helps that she has the entire school enchanted with her, from the principal who made an exception to keep her at that school, to other teachers who have declared they want her in their classes when she’s older. Not only has she put forth a lot of effort this year to practice the bizarre (to her) social requirements of society, she’s also fought back some of her stubbornness to allow herself to be taught, all while keeping up her aura of charisma.

For being socially awkward, she sure knows how to reel them in to get what she needs.

Did I mention goofy? That too.

I’m hopeful for the next school year – more hopeful than I’ve ever been, I think.

Filed Under: Autism, Cordy, school ·


Apr 11, 2011

Soccer Mom

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On Saturday, I officially became a soccer mom.

My inauguration was supposed to be the week before, but a brief case of food poisoning kept Cordy from making it to the first practice.

Cordy has been interested in soccer since she was two years old. She’s always loved kicking the ball around the backyard, head down, focused on having her foot make contact with the ball. For all of her lack of coordination, she’s surprisingly good at kicking a ball.

Signing her up for a soccer league is something I’ve been considering for some time, but I’ve been plagued by a lot of doubts every time I get close to doing so. She doesn’t like a lot of loud noises, and she certainly doesn’t like cheering. Coping with losing is not a strong point for her. She’s not very focused on group activities, preferring anything she can do alone instead.

But this year I’ve been getting some positive reports from school that made me think that now was the right time. Her teacher e-mailed me last month and said that Cordy learned to play kickball and was now playing with the other kids at recess. She then e-mailed me another day to let me know Cordy scored a home run kick that day. And then the next e-mail stated that the principal taught Cordy how to pitch the ball for kickball, and she can now pitch for her team! I was honestly shocked that she had become so interested in a group sport.

I still didn’t feel comfortable with signing her up for a soccer group, until I learned about a local soccer league for special-needs kids. The league is for all ages (they separate the kids into age-appropriate groups), and the focus is on simply doing your best and having fun. Each child received their own uniform, and there are lots of volunteers to help guide the kids and keep them motivated.

When I took Cordy to her first practice, she really didn’t want to go. “But mommy, my team will lose!”

“You don’t know that, Cordy. You might win. And either way, you’ll have fun.”

“But I might lose, too. I don’t wanna lose.”

Her anxiety was high when we got to the indoor soccer facility, made even worse by seeing the image of a flaming soccer ball on the outside of the building. (“Why is that soccer ball on fire? Will we get burned in there? I don’t want to catch on fire!”) As I checked her in and got her uniform, she stood off to the side pacing and hopping, looking uneasy.

I took her to the bathroom to change into her uniform, answering questions about what she was going to do and why she had to wear the uniform. I decided to skip the shin guards completely – strapping something tight around her lower legs probably wouldn’t go over well at the moment. Once she was dressed, it was like a switch flipped. “Mama, I look like a real soccer player!”

I took her to her assigned field, where several kids were already kicking balls around. Cordy took one look at all the balls and ran right in, eager to kick as many balls as she could.

Soon it was time for practice, and all of the balls except for one were removed from the area. The coach led the kids in some stretches and warmups, which Cordy mostly participated in. Then half the kids put on blue tank tops while the others kept their yellow shirts only to separate them into two teams. The rules were explained, and off they went!

The first goal was made by Cordy’s team. She ran right over to me, shouting, “I won! I scored a goal!” I reminded her that it was only one goal, and there was a lot more of the game to play. (I decided not to point out that she wasn’t the one who scored the goal, either. She wasn’t anywhere near the ball that time.)

The second attempt resulted in a goal for the other team. Cordy again came over to me, this time looking sad, and said, “We lost, mama. I want to go home now.” A little more encouragement, and she was back out with the other kids again. If she planned to do this each time, it was going to be a long, emotionally draining hour.

Cordy did fairly well on the field. She didn’t like to get in close with other kids, and so she wasn’t good at going after the ball. But when the ball happened her way, she often gave it a powerful kick to send it back down to the other end of the field, leaving others on her team to score the goal.

About 40 minutes in, Cordy started begging to go home. She was tired and didn’t want to play anymore because the other team kept scoring. I reminded her that kids who stayed for the full hour got a snack, and that was enough motivation for her to finish out the practice.

While I would have been worried about her behavior in another soccer league, in this group she fit right in. Other kids had meltdowns, didn’t want to go near the ball, kicked it the wrong way, picked it up with their hands, or just sat down on the field and refused to move. And the parents just cheered them on and provided encouragement.

No one though twice if a child had to leave for a few minutes to calm down. Parents were allowed out on the field to help their child if needed. It was a supportive environment filled with love for our kids, ending with all of the parents standing side by side in two lines, putting their arms up to form a “tunnel” for the kids to run through while the parents cheered and told them what a good job they did.

After we got home, Cordy told me that she had fun and wants to go back again next week. I’m hoping this will be a good introduction to group sports, and perhaps if she does well in this league, we can try her in a more competitive league in the future.

Filed Under: Autism, Cordy, daily life ·


Mar 31, 2011

Poisoning Kids With Bright & Colorful Foods

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When Cordy was first diagnosed with autism, we looked into everything we could to help her. Therapy was expensive and involved long waiting lists, but in the meantime there were several doctors promoting supplements, medications, and diets that promised anything from a little help to a complete miracle.
I tried to be skeptical, or as skeptical as one can be when first finding out your child has a lifelong neurological condition that you would pay nearly anything to see disappear. I dismissed the big promises as junk science, but one topic kept coming up over and over: food additives.
Eliminating artificial food additives from my daughter’s diet was a simple enough solution to try, I thought. After all, it required buying no supplements or paying for some guide to the secret foods she must eat to behave properly. I just needed to read labels a little more closely, right?

Ha.

I don’t know if you’ve been reading labels lately, but just about EVERYTHING has artificial food dyes in it. Candy, mac and cheese, juices, fruit snacks, crackers, grape jam, cereal, baked goods, applesauce, chips – the list goes on and on. If it’s designed for kids, it’s even more likely to have artificial dyes in it. When I first tried to swap out her regular favorite foods for dye-free foods, it was nearly impossible. Everything had dye in it, even when it didn’t need to. (Why would something WHITE like white cheddar mac and cheese need dye in it?)

Now the FDA is turning its attention to food additives this week – specifically food dyes – and I’m carefully following the news to see what conclusions they draw. Since Cordy’s diagnosis, I am now convinced that food dyes play a role in her behavior, and when she avoids them her behavior is much better. She’s like a Jekyll & Hyde depending on if she’s ingested artificial food dyes or not.
Research shows that many children exhibit signs of hyperactivity when they consume artificial food dyes, and limiting the diet to remove these dyes often results in a dramatic improvement in behavior. The proof is enough for the European Union to require warning labels on foods containing artificial food dyes, resulting in fewer foods containing the dyes in European countries.
I’ve done my own experiment. It went something like this: Detox Cordy from all dyes for 5 days. Then give her a candy that has nothing artificial in it. (Plain rock candy sticks are great for this test.) Wait for any behavior change. In this case, no behavior change.
Then the next day, give her candy with food dye in it. (Blue lollipops are her favorite, and also her downfall.) Wait for any behavior change. After eating it, 30-45 minutes later she was a monster: unfocused, quick to tantrum, hyperactive, irritable, unsettled and sometimes feeling tired and ill. These changes can sometimes last 3-5 days from one exposure.
Suddenly it all made sense. I now know why holidays and birthdays were so traumatic in the past (colored icing on cakes and cookies!), why she always acted up more after a lollipop, and why cupcakes made her sick to her stomach.
Artificial colors are poison to my daughter. They alter her behavior, cloud her mind, and leave her unable to cope.
The worst part? They’re in most kid foods, and there’s no need for these dyes. Their only purpose is to make junk food look pretty and colorful so you’ll want to eat more of it. And there are plenty of perfectly good natural dyes that can be used in their place. Just look at the Annie’s brand of fruit snacks – all natural colors, but still bright, and my kids still beg for them.
It is maddening to find dye-free foods for my family. We often have to shop in the organic section of the grocery store to find safe foods, and because they’re in the organic section they cost more.
Teaching Cordy about what she can and can’t eat has been difficult, too. She is old enough now to understand that dyes make her sick. She’s even admitted to us that she feels “bad” (as in sick or unwell) when she eats something full of dyes. She can’t read labels yet, however, so she has to rely on adults to tell her what’s safe and what’s not. (Although she’s getting good at seeing most brightly colored candy and saying, “That will make me sick.”)
But we still have to take away 80% of her Halloween candy and trade it for safe snacks. And it’s hard when even the schools encourage her to eat Skittles as rewards in the classroom, or popsicles on the playground because all of the kids are getting them. They think they’re being fair to her, but they’re only hurting her. Fair is actually NOT giving her the popsicles the other kids are eating, so that she’ll be able to function in the classroom after recess.
I’m tired of food manufacturers saying that artificial food dyes are safe. They’re not. Most are made from coal tar or petroleum. Some have been labeled carcinogens. I don’t need Red #40 in my ice cream to know it’s strawberry – that’s why I have taste buds.
I e-mailed Kraft Foods over a year ago and asked why they needed to add yellow food dye to their famous blue box of mac and cheese when there are safer natural yellow dyes that could be used instead. The response was that the FDA had declared it safe to use, and they have no plans to change their ingredients. It was a beautifully written pat on the head with an underlying tone of, “Well, bless your heart, you poor crunchy nut. We don’t care what you think because kids like neon glow in the dark mac and cheese.”
I hope the FDA won’t bow to the lobbying from the food industry this time and will, at the minimum, require warning labels on any foods containing artificial food dyes. And then maybe Cordy’s favorite mac and cheese will decide it’s time to change their ingredients so she can eat it safely.
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Filed Under: Autism, big issues, Cordy, daily life, healthy living ·