I cried this week. I cried twice, and both times it was out of happiness. A normal week was transformed into a week of extraordinary joy as a parent with a special-needs child, and all it took was a letter and a conversation.
I knew that the decision for the appeal of Ian's toilet seat was due to come at the end of September, so I had been especially vigilant about getting the mail recently. When I saw it in with the mail the other day, I caught my breath and tore it open immediately. I flipped to the end of the document, where the decision is stated (this isn't my first Medicaid appeal!) and skimmed for the statement of whether I'd won or lost. I read the sentence, " The agency did not properly deny the Petitioner's PA request" and a huge smile spread across my face. It wasn't until I flipped back to the first page and read the whole decision that the crying started. After paraphrasing the "state expert's" statements denying Ian the toilet seat, the judge then paraphrased my testimony, and in that paraphrasing I could see that she really got my point when I was explaining to her why this toilet seat absolutely is medically necessary. Here are a few of my favorite excerpts from the judge's paraphrase of my testimony:
"There is no evidence that his cognitive skills will prevent him from independently toileting."
"The Petitioner's mother strongly disagrees with the Department's assessment that the Petitioner should be using his bed for his bowel program. She testified that it is an issue of dignity for the Petitioner, that he is almost 5 years old and it is degrading and offensive to be changed in the bed where he sleeps. She feels this is not an option for a 5 year old that is cognitively intact."
And here's my absolute favorite part:
"The evidence is clear that the Petitioner requires the use of a toilet chair with back and side supports in order to participate in a bladder and bowel toileting program at home. The Petitioner is cognitively ready and able to participate in a bladder and bowel program. While the Petitioner continues to need some physical assistance to transfer to the toilet chair and needs to learn the catheterization and enema process for a bladder and bowel program it is difficult to understand how he can learn these skills without using and practicing with the chair." (YES!)
"Based on the evidence, the Petitioner has demonstrated that the requested toilet chair is necessary to treat the Petitioner's disability, it is cost-effective and it is the most appropriate equipment for the Petitioner."
BOOM! A wave of happiness washed over me, followed by a wave of relief. Finally, someone saw it my way, and made it possible for me to make the best decision for my son. The "state expert", who had denied Ian the seat and instead suggested that we do his toileting in his bed, had been overturned, her decision deemed the incorrect one. Finally. It was one of the most rewarding feelings I've ever felt. That is why I cried happy tears.
Then, while still on the happiness high from the appeal decision, I received more great news from Ian's teachers at school: Ian is doing great in 4K, and is even making friends! His teacher told me that he can identify all the letters - upper and lowercase - numbers, colors, and can write his name without help. I, of course, already knew all these things, but now she knew them too - she knew he was as smart as the other kids in his class, despite his communication difficulties. Can he sing the ABC song? No. But does he know all the letters? YES! That his teachers worked around his challenges to find out what he really did know sent my heart soaring!
And if all that wasn't enough, both of Ian's main teachers also gave me positive reports of his interactions with the other children in his 4K class. One of my biggest fears about Ian starting mainstream 4K was how he would be received by the other kids in his class. Would he just be "that kid in a wheelchair", or would he be completely accepted by the other children? Would kids flock to him just for the novelty of his wheelchair, or would they truly be interested in his friendship? Would they ask him mean questions, or tease him for not being able to do everything they can? I've worried about it all summer, especially after an incident at a playground where another boy about Ian's age got about an inch from his face and said, "What's wrong with you?", and then ran away before Ian could say or do anything. I envisioned the 21 other students in Ian's 4K class doing the same thing to him, and it was a very unsettling feeling. My fears were eased by Ian's teachers, who told me his classmates are completely accepting of and helpful to him. They sit with him in the classroom, include him in playtime, and help him when he can't reach something. Another huge wave of relief washed over me - it was almost too much relief for one week!
All of these burdens being removed from my mind and my heart were enough to warrant a cathartic, happy cry. Being the mother of a special-needs child can often lead to a good amount of sad, hurt, and frustrated crying, but it's those sweet, relief-filled, happy cries for your child who has cleared the hurtle, made progress, or defied odds that make it all worth it in the end.
Saturday, September 8, 2012
|Ready to play!|
This morning, Ian played soccer for the first time. He played with other kids - even an actual scrimmage! He scored goals! It was a proud moment for him, and for Justin and me as well.
Ian's teachers told me about the TOPSoccer program when he was in school last year, and once he turned four over the summer he was old enough to play this fall. TOPSoccer brings the fun of soccer to children with disabilities. Besides teaching the game, the program also teaches kids teamwork, self-confidence, and the importance of physical activitiy. Luckily for us, the closest program is only a 15 minute drive from our house, in a local school's gymnasium. The kids have all different abilities - some are in wheelchairs and some are not. Each player is paired up with a volunteer buddy, and the fun begins! The wheelchair kids were allowed to use their hands, and Ian couldn't get enough of throwing the ball into the goal net. After he would make a goal, he would pump his fist in the air and yell, "Yeah!" loud enough for the whole gym to hear!
|Ian with his buddy, Willy|