Open House

Aquatic Demonstration with Children -- Warm water is an effective treatment tool for children with neuromuscular problems. This demonstration will be with a 3-year-old child who walks on his toes and has subsequently become stiff in his legs and his trunk. You will see how this new kind of "play" in the water relaxes his muscles and allows him to have increased range of movement.

-- From Local Physical Therapy Open House Brochure

Back to Reality

I'm so thankful spring break is over. Erik had two weeks off school and his early intervention therapy home visits. I truly believe he missed it all. EI only comes to our house twice a month now. As he has grown, his needs have changed. Since I added hippotherapy and pool therapy, I cut his home visits in half. I have yet to contact the hospital about the music therapy there.

Brian took the day off yesterday and accompanied us to school. Erik seemed slightly thrown off by our return to the building and his classroom but seemed happy to be back. He did his usual peering into each office window as we made our way down the sidewalk along the front of the building, making sure he didn't forget to greet anyone. The shiny metal strip across the floor in the doorway that we previously conquered once again caused him to stop in his tracks and tentatively stretch one of his skinny, stiff legs to the other side to make sure there was not an unseen edge or dropoff there. Other than that, it was business as usual. He unzipped his coat using his new football zipper pull, to the amazement of the staff, and when I took his coat off halfway, he finished pulling it off. I felt a little guilty making him perform his new skills like a trained monkey, but I love to show him off!

Brian and I dropped Erik off and walked down the hallway to the library for parent group. Since we were the first to arrive, I chose my usual comfy rocker/ottoman combination. Brian sat beside me in a folding wooden chair, and we enjoyed our coffee together. Soon the room was packed with mothers and three infants and became the delightful, sweltering hotbox I have grown accustomed to. There was no set topic. We discussed Easter and how there was no longer an egg hunt for disabled children in town. We discussed the hotly debated autism-vaccination connection. We discussed the latest and greatest treatments for eczema, none of which seem to completely work for us. We discussed how parents with special needs children are sometimes cruelly mistreated and judged when they are in public with their families (appalling). Thankfully, Brian and I have not had anyone approach us with such sage advice or comments as, "You should spank your child. That would solve all of his problems" or the ever popular, "Why can't you control your child?" Even worse is the fact that some people feel like they have every right to blatantly stare without saying anything at all. It was unanimous that we would much rather have a stranger ask what is wrong with our child rather than say nothing at all and simply stare. Erik seems perfectly normal to me when he is sitting in a shopping cart, but Brian pointed out there are now times when Erik talks loudly in stores and makes it obvious something is different. That in itself doesn't seem to bother either of us, but I feel like I should at least try to be prepared for the first time someone says something rude to me so I don't "accidentally" (a) punch/mace/kick/slap anyone or, even worse, (b) burst into tears at the supermarket. I don't want to be blindsided, and those types of things usually happen when you are most vulnerable. However, people have been more than kind to us so far and seem to naturally fall in love with him.

Someone made a huge generalization about children with Down syndrome being "so lovable" and "happy all of the time," and I winced as I looked at the mother dealing with Down syndrome. These comments sounded slightly condescending to me, as if she were talking about fluffy puppies, not children. The other mother politely explained that her child has violent outbursts and bashes his head into the wall at times. I feel her pain, as people often view those with Williams syndrome as being happy 24-7 with no worries in the world. In reality, our children become just as frustrated, if not more, with things as any other child would. They are perfectly aware of the fact they are wrong when they are asked to solve simple puzzles or problems and are unable to make their brain see the answer. How frustrating would that be? Adolescence can be a desperately lonely time for someone with Williams or Down syndromes, and many have no close friends. Even in special ed parent group, there are misconceptions about each condition and syndrome from one parent to the next. I don't pretend to know much about Down syndrome, but I could definitely read this mother's body language and see she felt it was important she communicate that life at home was a genuine struggle at times. These kids are human beings like anyone else with complex emotions.

The typical babies in the room at parent group nursed, played, cried, and babbled during our session. They are all adorable. Brian and I marveled at how one tried to put one foot in front of the other when he was held upright at 6 months of age (something we did not see in our own child until much later). I chose not to hold a baby this time. The last time I did, I felt surprisingly emotionless about the brief experience, and my shirt smelled vaguely like fried food all day. Gross.

When it was time to leave, Brian and I went up to the classroom and found Erik in front of a little red plate that obviously once held chips and salsa. Bev reported that once he got into these particular chips, he ate with gusto. The boy is officially a salsa lover. It's perfectly natural, as I ate probably 45 gallons of it when I was pregnant with him (hot, of course).

So life goes on now. We have a financial planning meeting this evening, a home visit tomorrow, and hippotherapy on Friday. It's nice to have things back to normal again, and I am looking forward to a weekend at home.

Tubby Wa Wa

Erik's pool therapy began this week. I packed my old high school duffel bag with a towel, swim diaper, soap, washcloth, and granola bar, and we headed to the PT facility. There was a athletic-looking man with silver hair dressed in expensive exercise attire in the waiting room. He stared at the two of us and smiled as I struggled to juggle Erik and everything I was carrying. Just as my bottom hit the chair, a therapist came and called his name. He closed his magazine, stood up, and began walking out of the room, but his trunk rotated progressively in order to keep his stare fixed on Erik. His arm reached out towards him as if he was going to say something, but he seemed to change his mind as he began to round the corner. He finally turned to follow his PT, and I caught an almost confused but definitely pleasant smile still fixed on his face. I smiled myself. Erik seems to touch everyone in a way I can't understand. This man seemed to be caught off guard.

Ms. G met us in the waiting room wearing a black swimming suit, wrapped in a fluffy towel that looked fresh from a dryer. We followed her bobbing ponytail down the hall into a small area designated for changing clothes. We picked one of the two sides of this tiny space that contained a shower stall and a folding metal chair. I pulled off Erik's clothes and dressed him in the ridiculous Lion King swim diaper I had purchased at Safeway the day before. I was told I could choose to run errands and leave Erik there, sit in the waiting room, or sit in another metal folding chair on the side of the pool. I opted for the poolside seat, at least this time. The pool was between 4 and 6 feet deep, depending on where you were standing in it. In the deeper half, a woman with bobbed white hair and a tattoo of a gecko on her shoulder followed the instructions of her therapist standing on the side of the pool next to me. Ms. G and Erik descended the small set of stairs into the very warm water. Erik seemed immediately relaxed. The stiffness in his muscles melted away, and his legs kicked gently in the water behind him as she held him. As they played with the impressive selection of ping-pong balls, milk jugs, plastic boats, and party beads, I scanned the room. There were plastic fish schooling in a shower of colorful glass raindrops hung from the ceiling in one corner. There was the usual mysterious assortment of life rings and hooks designed for plucking people in distress from the water like fritters from a deep fat fryer. There was a giant metal hanger on a pivoting mechanism I guessed was for transferring patients unable to move on their own. The heat of the room soaked into all of my pores, and my hairspray threatened to fail. I closed my eyes and imagined I was on a beach. After a brief vision of me losing consciousness in the relaxing steam and pitching forward into the pool like a scene from Weekend at Bernie's, I decided to keep my eyes open. Erik's limbs were moving more fluidly now. Ms. G stretched him and trailed his legs behind him as she moved. I felt something well in my heart as I watched my son's legs work gracefully. He looked completely normal to me for once. I bit my lip and went back to my daydreaming. The other client in the room crossed our half to exit the pool, and on her way she looked up at me and said, "I just have to say that your boy is so cute! He is just so friendly!" Again, I had missed any sort of interaction between Erik and this stranger. He had claimed another victim. I smiled again in wonder at this phenonenon as the door closed behind her. The session continued. Before I knew it, an hour had passed, and Erik was being slowly walked up the steps. When he reached the top, I caught him in the hooded towel I brought and walked him back out, where I sat him on the slats of a fold-down wooden bench and rinsed the chlorine off in his very first shower. I dressed him and managed to stay 90% dry. On the way out the door, I was asked to make a payment and sign forms while I attempted to keep Erik from plunging his hand into the water feature (too late), running back down the hall, or dumping over the wheelchair in the foyer to spin the wheels. I was back to being edgy, but I left knowing his session seemed to be relaxing for him and would help keep his joints and muscles loose.

Hippotherapy begins Friday the 9th.