You are here: Home / Archives for Autism
May 22, 2010

When Is The Right Time?

By ·

I don’t know if you’ve seen the new TV series Parenthood, but if not I highly recommend checking it out. I was originally interested in it simply because I was curious how they would portray, well, parenthood. It’s true, marketers have me pegged – put the word parent or mommy or mom in a title, and you can guarantee I’ll check it out.

The show is funny. Very funny. And sometimes painfully funny – in that way where you laugh but inside you cringe a little because you’ve been in that exact same situation and remember how humiliating it was. But the show also takes itself seriously in portraying the lives of an extended family, all very different people in very different situations. These people could be us, and in watching the show you quickly find yourself drawn to identifying with one person who is most like you, yet recognize so many of the struggles faced by the other characters, too.

In watching the show, the one thing I never realized was that Parenthood would also be tackling the subject of autism. In early episodes, one couple discovers that their son is on the spectrum, and their world is turned upside down in so many ways. When I quickly realized where they were going with that plot topic in the first episode, I wasn’t sure how I felt about it. Would they make the topic of autism light and fluffy? Would they make it worse than it really is? Would the boy be little more than a caracature of a child with autism, or would they really make it realistic?

Truth is, they have so far done a brilliant job of walking the line to bring awareness to the condition. I’ve cried several big, fat tears while watching this show because these parents could be us. Hell, their names are Adam and Kristina – how much closer to Aaron and Christina could you get? I watched them struggle with even accepting there might be something wrong with their son, and remembered my own struggles with the same topic. They frantically searched for a “cure” just like I did. They’ve tried to protect Max from those who don’t understand him, the same way we’ve tried to protect Cordy.

Of course it’s a TV show, and there will never be enough time in each episode to present a full, clear picture of autism, but I’ve been impressed with how real it is thus far.

This week’s episode really affected me, though. In it, the family teams up for the Walk for Autism, with Max as family cheerleader, determined to win the trophy. At one point, he shouts, “Let’s help those kids with autism!” and everyone in the room is suddenly aware that Max doesn’t know yet that “those kids with autism” includes him.

I don’t think we’ve ever told Cordy that she has autism. Granted, she’s much younger than the character of Max (who is nine, I think), but it’s never been something we’ve talked about. She’s attended special-needs preschool for three years now where she’s had weekly speech and motor skills therapy. For three quarters of a year she’s participated in a research study for kids with autism, requiring several cognitive and developmental skills tests. She’s taken pills purely at our request, never really knowing why we asked her to take them other than “they help you stay healthy,” just like her vitamins.

But despite saying nothing to her directly about it, there have been clues. She knows she won’t ever wait at a bus stop for her bus like other kids. She’s aware that some kids in her class can’t talk and have meltdowns that sometimes require them to be restrained. For herself, she knows she has “the flappers” who live in her arms and sometimes make her flap. She knows she has irrational sensory fears. And there are times I’m sure I can see right into her mind through her eyes, watching as she fights internal battles with herself over her confusion on social cues and her reactions to the world around her.

The TV show psychologist told Adam and Kristina that they will know when the right time is to tell Max about his autism. I hope the same is true for our family. She’s probably too young to even understand it at this point, and I don’t want to further burden her with the knowledge that she is most definitely not like other kids. She already has moments where she seems so distant and sad, as if she’s pondering how to solve world hunger, wars, and the environment all at once. Why add more weight to such small shoulders?

I don’t want Cordy to feel different, but at the same time I want her to know it’s OK to be different. I sometimes feel like a hypocrite – I’ll stand proud and defend her differences, reminding anyone who would shun her that autism isn’t a choice, but I also want her to improve and hope she’ll be able to fit in better with her peers. It is possible to defend her diffences and yet want her to change in the same breath?

No one said parenting would be easy. It’s no surprise why I watch any show with the word parent in it and participate in the parent blogging community – it’s impossible to do this without looking to others for support and a little validation that I’m not the only one who feels like I’m parenting blindfolded without a net sometimes.

Filed Under: Autism, being a mom, Cordy, pop culture · Tagged:


May 18, 2010

Bumpy Road Ahead

By ·

Cordy has spent much of her fifth year of life involved in a clinical research study. We volunteered her for this study of a known medication used to treat ADHD because we hoped the researchers were right and it might also help children with autism who have ADD symptoms. We knew it involved a lot of time on our part, and a lot of uncomfortable situations on Cordy’s part, but we also knew that something else had to be done to help her cope with her world.

It’s been a roller coaster of a ride so far – first we completed ten weeks of the blind study only to find that she was on the placebo during that time. Then we entered into the longer open study, where the medication has been slowly increased and then backed down when Cordy began to show a side-effect of irritability. Cordy has been amazing through all of this, happily swallowing her pills twice a day and enduring blood draws and cognitive testing with (somewhat) little drama every ten weeks. It probably doesn’t hurt that she really likes the research team and they fill her full of Annie’s fruit snacks and animal crackers at each visit.

We’re now nearing the end of the study and while her focus has improved and her repetitive behaviors have decreased, she’s still rating high on hyperactivity and impulsivity, and the irritability never went away. At Friday’s visit, the study doctor determined that she has only moderately improved on the study medication, and the irritability side effect concerned him. As a result, a decision was made to quickly taper off the medication and consider the possibility of a different medication for her. The catch? She’s going two weeks with no medication whatsoever before we’ll look into anything else.

It’s possible this will be a great two weeks. We may find that her improved focus and decreased repetitive behaviors have become learned behaviors and she will do just great with no medication at all. I would love for this to be the case, because while I’m open to medication I’d prefer if she didn’t need it.

But it’s the opposite end of the possibility spectrum that worries me. What if she goes right back to her old behaviors as soon as the medication is out of her system? She could regress to a point where she stares blankly at the TV and shrieks for more if we try to turn it off, or refuses to do anything that requires a sustained mental effort of more than 30 seconds. The flapping could come back full-force along with repeating phrases over and over.

In other words: I’m a little scared. I’ve seen her grow so much over the past few months, developing into a child who can now make friends at the playground, who can write entire sentences and read books and do math problems, and I don’t want to lose who she’s become. It’s already hard for me to accept that she will continue to be in a special-needs classroom for kindergarten next year (with some inclusion in a mainstream kindergarten), but the thought of losing even a little of this progress we’ve made…

Of course, it’s unlikely she’ll fall into that worst-case scenario. But it’s also equally unlikely Cordy’s behaviors will follow the best-case scenario, either. Which means we’re stuck somewhere on the spectrum (and yes, I’m including the double meaning of the word spectrum here), hoping to be higher than lower.

Her last pill is this morning, and then we simply wait it out. If she does regress, we will then meet with the study doctor to consider another medication that might produce the same effects of the last one without the unpleasant side effects.

Let’s hope this “detox” goes well for her or I may be the one needing medication at the end of these next two weeks.

Filed Under: Autism, Cordy, growing up ·


Apr 14, 2010

Baby Steps Forward

By ·

Part of the challenge of starting a new job has been childcare. I’m training on day shift for all of April, and while Mira’s preschool has flexible drop-off and pick-up times, Cordy’s school has a specific start and end. If someone isn’t home when her bus stops at our house, she isn’t let off. (And serious consequences happen at that point.) Right now, no one can be home at that time.

Last week was Spring Break, so we had a little time to find a contingency plan. The solution was latchkey, a program in the school designed to allow working parents to drop their children off early in the morning and/or stay late after school. Latchkey has teachers to provide activities, snacks and supervision for kids of all ages. There was an opening in her school’s latchkey, so with the (cautious) recommendation of her teacher, we signed her up, and her first day was Monday.

I was worried about how it would work out. When we met with the latchkey teacher, I explained Cordy’s issues and ways to work around her challenging behaviors. The teacher explained that as long as Cordy could follow the basic instructions and rules of latchkey, she would do fine. But that was my worry: sometimes the most basic rules are the hardest for her to follow.

Aaron reported that when he dropped her off Monday morning, she was a little resistant to going to the gymnasium and not her classroom. She didn’t want to put her backpack in the designated basket when she knew it belonged on her hook in her classroom across the hall. I hoped the afternoon wouldn’t bring a bad report and have us one step closer to looking for another childcare option.

That afternoon the teacher told us she did well. She had trouble in the afternoon during “homework time” and asked if we could bring in some activity books or coloring books to keep her occupied. No problem – Cordy will spend hours working on an activity book if allowed.

The second day is often harder than the first, but to our surprise Tuesday morning went smoothly. She put her backpack in the basket and didn’t complain at all. In the afternoon, the report was even better. The teacher said Cordy helped her set up the snack table for all of the kids, and was happy to work on her activity book during homework time. Her classroom teacher also said Cordy had a great day at school, too.

I think this might just work.

But school will be out for the summer in less than two months. So my thoughts have turned to summer camp. Trying to find a summer camp that is affordable and will accept Cordy isn’t an easy task. We could send her to the camp she attended last year, but it’s very expensive and the fast-paced schedule for her age group would likely be too much for her to handle. And let’s not even mention the daily swim lessons – I don’t want to relive that nightmare again.

I’m currently researching two summer camps for Cordy. One is a camp for children with varying levels of special needs (kids without special needs are welcome too), with therapists present to help with anything she might need. No worries about her being kicked out. The other is a mainstream Montessori that appears to be welcoming to children with special needs and could be a great way for us to evaluate a different curriculum method for her.

I’m so proud of how hard Cordy works to fit into the world around her. On a very basic level, she’s beginning to understand that she’s not like many kids, and I think it bothers her. Latchkey is just the beginning of introducing her to more mainstream opportunities, and it could be the next link in getting closer to Cordy being fully mainstreamed.

I hope this just might work.

And her sister will always make sure she doesn’t feel alone in being different.
Filed Under: Autism, Cordy, daily life, school, the J-O-B ·


Mar 30, 2010

New Blog Post, Now With MORE Evaluations!

By ·

Despite knowing that more than half of the adult world are parents, it’s easy to feel alone sometimes. Especially when your kid doesn’t follow that standard growth curve, be it physically, developmentally or socially. You want to talk to other parents about your child, but at the same time, you worry no one will understand. Or worse – they won’t care and instead judge your parenting in its place.

Which is all a long-winded way of saying thank you. Whenever I need advice, encouragement, or just someone to say I hear you, I can always turn to the blogging community for support. My previous post was mostly about me trying to process the news I had been given about Cordy, and all of your comments were very, very welcome. I was feeling a little alone and uncertain about what was the best course of action for her, so crying it out in a blog post seemed like a good way to work through it. It’s a lot of responsibility to make choices that could affect her entire life, and I often worry I’m making the wrong ones.

You’ve given me fresh ways of looking at the situation, new ideas to consider with her team, and a lot more hope that no matter what decision is made, it’ll all work out. This is the heart of blogging for me – the community – and I hope this aspect of blogging never goes away. I no longer feel alone; instead I’m empowered and know that I’m doing the right thing by carefully considering the options and continuing to educate myself more on each option.

At this point, a lot of my worrying is on hold until we find out what schools she’s offered acceptance into next year. Our school district has a lottery for schools, and we can apply for up to three. We’ll have to see what schools are even available to her. Depending on the lottery, she may not even have the choice of a special-needs classroom. Or if we really want to pursue that option, we’ll have to work with school officials to bend the rules to get her where she needs to be.

Instead, I now turn my attention to the question of summer camp. Cordy attended a mainstream summer camp last year with little difficulty (OK, there were a few bumps along the way…), but this year she’s old enough to be in the older kids camp, with a more rigorous schedule. I’m not sure if it would be the best fit or if we should consider a special-needs camp. I’ll be spending the next weeks researching all our options and likely doing more hand-wringing.

And then there’s Mira.

Not content to let her sister get all the attention, she had her own school district evaluation a few weeks ago, and just last week we received the results of that evaluation. A team of experts again convened around a table with me, and one by one they gave me their report on Mira.

(Spoiler: She doesn’t have autism. Not even a chance. At all. Nope, none. Just wanted to get that out there before we begin. Our purpose of the evaluation was to see if she qualified for further speech therapy.)

First, the psychologist explained that Mira scored on the high end of average range for social/emotional skills and adaptive behaviors. She knows how to play the social game, and she has a good grasp of imaginative play and daily living skills. No surprises here.

Then gross and fine motor skills were addressed. She is at the low end of average for both of these, but not behind enough to qualify her for special needs services. Both therapists explained that most of her problems with these areas were in motor planning, and depending on the results of speech would tie in with a diagnosis of speech apraxia.

Then the speech therapist started her presentation. She began with verbal comprehension, and explained that she’s never seen a child of Mira’s age score so high. She was easily working with concepts rated for a five- year-old, and the therapist said she probably could have handled the seven-year-old material but she stopped the test before that point, fearing that Mira would tire out before the other therapists had the chance to evaluate her.

At this point I was resigned to the idea of Mira not qualifying for any additional services. I was hoping she’d be offered some speech therapy through the school district, hoping we could cut back a little on the $100 a week we’re spending on her current speech therapy. But with such good evaluations – even possibly gifted in language! – it seemed unlikely they would want to help her speech issues.

But then the therapist brought up the area of articulation, which in Mira’s case she described as “a mess.” She drops a lot of consonant sounds, substitutes sounds for other consonants, and generally is very hard to understand. In terms of placing her on their scale, she ranked well below the cut off line for average.

Put the articulation and verbal comprehension scores together and she still is average, but in this case the therapist recommended the school district still provide services. They don’t want her to become frustrated at not being understood and then stop trying. We’re lucky that she’s a persistent little thing right now, repeating herself hundreds of times if needed until you understand what she’s trying to say.

So the final verdict was she has all of the signs of speech apraxia, which can be remedied by plenty of speech therapy. I’ll admit, I probably seemed far cooler about this news than they expected. But c’mon – a little speech delay? Pssh – that’s nothing. I can handle that! Did you meet my older daughter three years ago when she scared the school nurse with her violent meltdown? (Side note: the special ed teacher in the room DID meet my shrieking child three years prior, and still clearly remembers that day. She was the one who carried Mira into the building for me that day, and she’s ecstatic to hear of Cordy’s improvements.)

Our choices at this point for Mira are special-needs preschool or just speech therapy. They’re concerned she’ll be bored with her classmates in special-needs preschool, but the benefit is they can also offer her OT and PT to help those minor problems in gross and fine motor skills. Since it’s a half-day program, they recommended placing her in a typical half-day preschool for the other half of the day.

I’m leaning towards that option, only because they also promised me her teacher would be Cordy’s first preschool teacher, Miss Wally. (*Not her real name.) I may not have written much about her, but know that I’d walk through fire for that woman. She worked miracles with Cordy, and I remember last year we both cried – teacher and parent – on Cordy’s last day with her. She told me if Mira ever needed anything, I was to make sure they sent Mira to her. And now they plan to.

So it would appear I now have two children who are considered to be “not typical.” But I don’t mind. They are both awesome little girls, as different as the sun and the moon, and I’m glad I get to be their mother.

As a former quirky, nerdy girl who didn’t fit in, and possibly still doesn’t, these two girls couldn’t be more mine. Aaron would argue that he fits that quirky description, too. Which means we’re the perfect parents for them.

They may debate that statement when they’re teenagers.
Filed Under: Autism, being a mom, big issues, Cordy, daily life, love, Mira, school ·


Mar 22, 2010

Not The Words I Wanted To Hear

By ·

Cordy has been in a full-day, special-needs pre-K class (wow, that’s a mouthful!) for nearly an entire school year now. With only two full months to go before the end of the year, thoughts of kindergarten have been looming ahead of us. After winter break, the teacher started sending homework home with Cordy as an attempt to get her used to the kindergarten routine. I had no idea that kindergarten now has homework – whatever happened to practicing your letters and making crafts for your parents?

Cordy has been doing pretty well with her homework, and her teacher has praised how quickly she learns new subjects. So when it was time to attend Cordy’s transition meeting – to re-evaluate her needs and determine what services she’ll need for next year – my greatest worry was that she’d fool them all and not qualify for any services.

The meeting took place last week, and involved Aaron and I plus Cordy’s teacher, her OT, PT, and speech therapists, the school psychologist, and the special education coordinator. We all sat around a large table with papers scattered all over it. Each member of the team had performed a re-evaluation of Cordy’s skills, and we got the results in the meeting.

In terms of occupational therapy (fine motor skills), Cordy can do nearly everything. She has good fine motor control but still needs help regarding things that require strength or focus. They recommended she continue OT only to help with some adaptive skills that she lacks the focus to complete.

For gross motor skills, Cordy is doing well. She suffers from low muscle tone and therefore lacks the strength to do some things other kids her age can do, and she’s more than a little clumsy. She’ll also continue to receive physical therapy for next year.

Her speech therapist said she’s making tremendous progress in speech, with a lot of her scripting gone or so well refined that it’s hard to distinguish if she’s using a script or is answering a question on-the-fly. She has a large vocabulary, too. At this point, based on testing Cordy no longer needs to receive speech therapy. Hooray for graduating from one therapy!

Then Cordy’s teacher gave us her report on Cordy. She pointed out the academically Cordy is more than ready for kindergarten. She understands math concepts that are advanced for her age, and she’s at kindergarten-level ability for reading.

But socially, things aren’t so clear-cut. Her teacher is concerned that Cordy will not be able to handle herself in a mainstream classroom. She has little patience to wait until her needs are met, she doesn’t react well to changes in routine, and she would likely feel overwhelmed in a classroom with 20+ kids. She’s also a perfectionist who will shut down if she can’t do something perfectly on the first try. You also need to know just how far to push her when she does shut down – a little bit will be effective, but push too hard and you end up with a meltdown. A kindergarten teacher would not have the ability or the time to give her the one-on-one time and encouragement she needs.

Her teacher then recommended that Cordy not be placed in a mainstream kindergarten classroom next year, but instead in a special-needs classroom with the ability to spend a little time in a mainstream classroom each day. She said it would allow Cordy to have a one-on-one aide with her in that case, and the amount of time she spends in the mainstream classroom could be increased based on how well Cordy performs.

It was also at this point when the school psychologist chimed in to give us her assessment of Cordy. She referred to several tests that showed that cognitively, Cordy is gifted in many areas. Her ability to work with and understand non-verbal concepts is practically hovering on genius. But she lags behind on social-emotional concepts. The psychologist summarized that Cordy fits perfectly in the category of a child on the high-functioning end of the autism spectrum, possibly Asperger’s. She believes that with a gradual introduction to mainstream classrooms, Cordy will learn how to handle herself in the classroom and be a success.

I have to admit: I was heartbroken at the news.

Cordelia has made incredible progress since starting special-needs preschool and even in the past year she’s surprised me with her new levels of focus and understanding of the world around her. I started this journey through therapy with the hope and belief that Cordy would figure it all out and start kindergarten in a class of “typical” children. I even was prepared for the possibility she would continue therapy by being pulled out of class for her therapies as needed. But never, never did I consider that she might start kindergarten in a special-needs classroom, only occasionally visiting the mainstream class to get a taste at a “typical” education.

I’m sure I sound bitter, and I am a little. Actually, it’s less bitter and more scared. Having her remain in a MRDD classroom worries me. Will she be able to live up to her full academic potential if she’s not getting the entire curriculum of a typical class? And if she doesn’t get the full curriculum, how will she ever be able to transition into a mainstream class without that foundation to build on? Will we ever get to hear that she’s ready for a mainstream class? In her current classroom, she’s one of the highest functioning kids in the class and a lot of what they do is simple for her – will she really be challenged in a similar situation next year?

Beyond all of this worry is a feeling of failure on my part, too. Kindergarten was my line in the sand – I expected the official start of her formal education to follow that of her peers, with perhaps a little more support around her if needed. The what-if’s drive me batty – what if I had spent more time practicing social skills with her at home? What if Ohio’s health insurance system didn’t suck so much and deny her any coverage for necessary therapies, and what if we had worked harder and sacrificed more to pay for those therapies out of pocket?

No actual decision has been made at this point. As it stands, the team’s recommendations are only that: recommendations. As her parents, we have the right to ignore them and enroll her in a mainstream classroom. We know her abilities and we know what she’s capable of in many situations. But at the same time, these are the professionals who deal with this all the time. They see her at school each day, they know her well in that environment. Which of us really knows best as to what is right for Cordy?

I know that Cordelia is a smart little girl who tries very hard, has a good heart, and is out-of-sync with the workings of our world. Where that puts her in our education system, though, is a mystery to me. At the beginning of her formal education, this fork in the road looks awfully wide to me, and I can’t see the twists and turns each path could take to make the right choice. I’m willing to do anything for her to ensure she gets exactly what she needs to continue developing into the brilliant and cheery woman I know she can become, but at this point I don’t feel certain on which course of action to take.

Related Posts Plugin for WordPress, Blogger...
Filed Under: Autism, big issues, Cordy, school ·