Friday, June 26, 2009
- Walt Disney
Last night, Helena had a meltdown.
This in and of itself really isn't news. Helena, like many children on the autism spectrum, has frequent meltdowns. What's interesting is why she had the meltdown - she wanted a glass of water, and wanted us to get it for her because she was eating. We asked her to serve herself, and that started a good old fashioned, yelling, screaming, crying, foot stomping meltdown, which ended with Helena accusing us of never wanting to serve her anymore and uttering that she will never drink water ever again.
In fact, she ended up NOT drinking water - she had apple juice. But she served herself, which is what we wanted her to do.
Earlier this week Kristina Chew at Change.org talked about how her son Charlie, who is close in age to Helena, speaks few words, yet he does communicate in many different ways. Helena, by contrast, is highly verbal, with an excellent vocabulary. But her words often don't tell the real story, and we have to often search for what she is really trying to say.
Sometimes it's obvious. When Helena starts talking about what her favorite stuffed animal, Princess Johnson the Webkinz Persian cat, is thinking, it's easy to figure out that Helena is just using the stuffed animal to communicate her thoughts (for example, "Princess Johnson doesn't like being home alone" is Helena's way of saying that she is tired of the car trip and wants to go home.).
Other times, it's not as easy to figure out. Stimming is something done by many children on the autism spectrum, whether it's arm flapping or stretching one's fingers to the side or, as Helena does now, twirling your hair. One the surface, these look like annoying habits, but in reality the child may be saying that they are overstimulated, or not happy, or frustrated, and they either need to be redirected or otherwise removed from the situation. Same thing when Helena complains of a headache - we are never sure if she really has one or not, because she has often used this as an excuse to remove herself from an unpleasant situation.
The episode last night with the glass of water definitely falls into the latter category. It wasn't an isolated episode, but another display of one particular thought and fear in her mind -
Helena doesn't want to grow up.
At 10 years old, so many things are changing with Helena right now. Her schoolwork is more challenging and time consuming. Her baby teeth are almost all gone, being replaced by her "adult" permanent teeth. And her body is starting to change physically as well. In other words, she is starting to grow out of the childhood phase of her life, and Helena does not want to do that.
Her resistance to these changes is quite subtle. While her 8-year old brother and 7-year old sister have graduated to drinking from actual glass cups, Helena insists on using the plastic "children's" cups, like her 3-year old sister. While her middle two siblings have moved away from watching the "baby" shows on TV, Helena still watches them, and gets angry when you try to change the channel or turn the TV off. And last night was another example - having to pour your own drink at mealtime when your parents normally do that for you is a sign in her mind that you are outgrowing childhood, hence the meltdown.
If there is one thing that fatherhood has taught me, it's that even though we all grow up and have to assume the responsibilities of making a living, maintaining a home, and caring and providing for our families, we never can, as Walt Disney laments, forget the child we were, the child that still lives in all of us. My children have taught me to bring that child out again, whether we swing on swings, or play catch, or lay on the grass watching the clouds go by, and naming the shapes we see. Or watching our troubles float away in a blown bubble, to be popped out of existence somewhere downwind.
As Helena grows, that childhood she is so afraid of losing will always be there, ready to come out and play once more. The challenge is to communicate that to her in a way she will understand.
A challenge indeed.
Thursday, June 11, 2009
Thanks Tammy - I really appreciate the opportunity.
Wednesday, June 10, 2009
Today is the day, the last day of school. After today, Helena will be in 5th grade.
In many ways, this has been a challenging year for Helena. The school day was an extra half hour longer than before. The workload seemed to increase dramatically, and, early on, homework sessions stretched long into the night. There were monthly oral book reports, and oral presentations on each of the continents.
There was also a new school case manager to deal with, one that came on board only a few days before school started. A new teacher and larger class sizes too. Oh, and not to mention the expansion of the school that took away the primary playground space and all the playground equipment.
Of course, myself and the IEP team knew all these things were happening (aside from the change in case manager) and we tried as best we could to plan appropriately. Yet concerns remained. How would Helena handle all these changes and responsibilities?
Helena took to her new case manager right away, and quickly developed a great rapport with her teacher as well. The homework was a challenge at first, but as I met with the IEP team throughout the year we managed to come up with a strategy that helped Helena, to the point where homework was taking her about the same amount of time to complete as the other students. The playground was a huge issue, and still is. Recess was held in an open field without playground equipment, and while Helena occasionally participated in games with other children, most of the time she asked to be by herself. Definite sensory overload there.
Helena loved doing her oral reports. She especially loved making Powerpoints to use in the classroom.
In the end, she was a respectable "B" student in 4th grade.
All in all, Helena adapted quite well, thank you very much.
What becomes so apparent in repeating this process year after year is how much Helena has changed. Maybe it's due to familiarity, or a greater awareness, or maturity, or something else, or all of the above - I don't know. What I do know is that change does not affect Helena as much as it once did. I can remember how on the last day of school in kindergarten, and again in 1st grade, Helena had awful days, full of tantrums and other unacceptable behaviors. We all agreed that this was due to the last day being such a departure from the normal school routine that Helena could not adapt to it. The episodes were so bad that for the past two years we kept her home from the last day of school.
This year, though, is different. Yes, the school routine will be totally different as it usually is, but Helena is different as well. There will be parties and plays and overall fun today. And Helena will be a apart of it. There is no doubt she can handle it now.
So now, as of 2:30 pm this afternoon, 4th grade will be at an end. And on August 31, at 8:30 am, 5th grade will begin. In between, Helena will be attending summer school to help her with reading comprehension and some social skills, as well as just plain enjoying summer vacation. She already knows her new teacher, and she knows many of her new classmates.
There will be changes to deal with as always. The school will be bigger. There may or may not be a new playground in place. The old superintendent's office will be the new music room. She needs to learn how to use a combination lock. The school workload is again likely to increase.
My little girl can handle it. She has really learned how to adapt.
Thursday, June 4, 2009
My precious angel Helena turns 10 today. I can hardly believe 10 years have gone by since she was born. It all seems like yesterday to me.
It was only yesterday that she called me "Daddy" for the first time.
It was only yesterday that she danced, and played, and sang, and I danced and played and sang right along with her.
It was only yesterday that the dancing and the playing and the singing stopped, and autism took over.
And we cried.
And we asked God "Why?"
And we were told she would be a quiet girl, and that she had no imagination.
And we got angry.
And we got determined.
And the shadow of autism started to lift, and hope began to shine through.
And the dancing and the playing and the singing started again.
And I began to dream once more.
And I told God 'Why not!"
Helena is 10 today.
I marvel at how much she has grown through the years, and how much I have grown with her. While I have tried to raise her to be a proper little girl, she has raised me to be a better father.
Already she is transforming from a little girl into a young woman. Great challenges await her. Challenges that are complicated by autism. But these challenges are not insurmountable. Together, Helena, myself, and our family, we will learn from them, and grow because of them, and somehow find our way. It will be the road not normally travelled, but it will reach the same destination in the end.
And I will always dream, and always tell God "Why not!"
Happy Birthday, dear Helena, my precious little rose. Your Daddy loves you, and will always be here for you.