Wednesday, November 26, 2008

What I am thankful for

It's Thanksgiving Day here. I'm watching the Macy's parade while the turkey roasts in the oven, waiting to go over to my in-laws' house (just behind us) to eat. And playing with the new labrador puppy I got my husband for Christmas. And I'm catching up on my blog reading. An overwhelming theme, not surprisingly, has been "thankfulness." I have read posts by special needs parents who are thankful for what they have, posts by teachers who are thankful for what they do, and posts by others who are just generally thankful. And I decided to share one of the things for which I am thankful.

This may seem to get a little off-track, but trust me, it will all connect. This past summer I decided to hold a giant Birthday Bash in our classroom as a way to celebrate the ending of the summer term. We had several summer birthdays between students and staff and, well, it just seemed like a fun thing to do. We had a special lunch, I put together a fun birthday-themed music "therapy" session, one of the parents brought a pinata, and of course there was cake. It was a blast. About that same time I discovered the blog Micropreemie Twins: The Story of Holland and Eden and read this heartfelt post. A short while later I came across this post by Robert Rummel-Hudson, author of Schuyler's Monster and the blog Fighting Monsters with Rubber Swords. These posts really brought home to me the difference between being a special needs parent and a special needs teacher. For Eden and Holland's mother, the day they were born, their birthday, is one of the saddest, most difficult days of her life. She still struggles with the grief, guilt, and even disappointment of that day. And while her family recognizes and honors her daughters' birth day, they celebrate their Coming Home Day. How cool is that? One of my summer staff members who also worked as a nurse for her student's family, had recently complained about how the student's mother didn't really do much to celebrate the little girl's birthday and how unfair she thought this was. Prior to reading Billie's post I would have been a bit appalled by this myself. But Billie helped me see more clearly what this parent might be dealing with. She had a beautiful little girl who, she was told, wouldn't live long. And on top of that, she was told she was incapable of caring for her child herself and had to have outside help from critical strangers. Through Billie's words and willingness to share her own experience, I was able to empathize with this other parent and understand that her daughter's birthday was most likely accompanied by painful memories and tremendous guilt and grief.

Robert Rummel-Hudson put it very succinctly in his post and shared quote from a key note speech he gave (read the speech; whether you are a parent or a teacher, it is worth the time). I can't say it better than he does:

"It might be the most striking difference between our experience with the world of broken children and yours. As special educators and experts in assistive technology, you have sought out the monsters. You’ve armed yourselves with the knowledge and the tools to fight them, and you’ve gone into battle with your armor in place. For parents, the monsters have found us, in most cases sitting by the campfire in ignorant bliss, totally unprepared."

Wow! I had never really thought about it like that. From a professional stand point it can be so easy to be superior and critical about parents and how they choose to raise their special needs child. It is easy to forget that I went to school to learn how to work with kids with special needs, that I have had extensive training in all the latest techniques and "best practices," and that I have access to the resources that are available. Parents don't get that. Most of them find themselves with the world of disability suddenly and unexpectedly dropped into their laps, all those dreams and desires inexplicably crushed. It's hard enough trying to figure out how to parent a child, let alone meeting the often complex needs of a child with disabilities. I can't even imagine the difficulties of navigating the maze of medical institutions, diagnoses, treatments, side effects, therapies, services, early intervention, constant fear and worry,.... Oh, and taking care of the rest of the family, tending to the house and yard, maintaining a job, planning and preparing meals, walking the dog, and, when time permits, caring for yourself too. My 8 hour work day is spent dedicated to meeting the needs of that special needs child, every minute of every hour. I have few if any other responsibilities during that time. Believe me, when I go home at the end of the day, often exhausted, I am grateful for the fact that I can actually sit down and put my feet up. Not so for the parents I work with. They come home from a long day at work and have to reposition, toilet, feed, bathe, entertain, and keep safe their child with disabilities and tend to the needs of the other members of the family. These parents are consumed by this world 24 hours a day, 7 days a week. There is no break. And they always feel guilty for not following through consistently with school programs. So what? Their child is happy, healthy, growing, and developing. If I do my job right, they should see positive changes at home even if they aren't able to work very hard on it. And when I start to feel resentful about the time ROCKO takes from my "personal" time, I remind myself that those parents don't get personal time. It's a small gift I can give them, letting them know that their child is safe, well-cared-for, and happy for a few hours so they can squeeze in a little time for themselves.

So, back to what I am thankful for: the parents of special needs kids...

Thank you for having the strength to persevere through the surprise and shock of learning your child has special needs.
Thank you for choosing to bring your child into the world when you knew he would have special needs.
Thank you for choosing to adopt your special needs child.
Thank you for fighting "the system" on behalf of your child. It takes unimaginable energy and persistence to struggle against obstacles like pessimistic doctors, selfish insurance companies, and convoluted government programs.
Thank you for being a strong, vocal, loud, obnoxious, demanding advocate for your child. That advocacy makes me a better teacher and your child's education more effective. It makes the world that much better for your child.
Thank you for supporting me as your child 's teacher, and pushing me when I need that push.
Thank you for sharing your child with me. Thank you for your trust and your belief in me and what I can do with and for your child. That is such a huge risk for you and I enter every day well aware of the gift you give to me and strive to honor it in all that I do.
Thank you for including me in your journey through life. It is a true honor to walk side by side and hand in hand with you as we both love your child into the future that he or she deserves.

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