Saturday, March 31, 2012

Who Can You Trust?

In the past two days I've stumbled across two stories that have made me sad and angry. The first one I saw yesterday on a spina bifida group I am part of on Facebook. It was making the rounds because, though the boy in the story has cerebral palsy, he is in a wheelchair, which is a commonality for people with spina bifida as well. It was a picture posted by his mother, showing him at a choir concert with his class. His class is up on the risers with the choir teacher in front of them, and the boy, whose name is Alex, is off to the side, not at all a part of his class. His mother explains that she expected the teacher to position her son with his class after they were up on the risers, but instead they just started singing the song while he sat off to the side. In the audience, she felt there was nothing she could do to help her son without embarrassing him while his class was up there singing. She didn't want to make it worse for Alex, so she waited until after the performance and then complained to the teacher and the school. It looks like she's getting some local press for the story, and possibly some national attention too, according to her Facebook page.

The second story I just saw today, also making the rounds on the spina bifida group page. This story, reported by ABC News, is about a fourth grade boy with cerebral palsy who was being mistreated at school. Not by fellow children, but by a teacher and an aide in his classroom. Grown adults who were supposed to be teaching and caring for this boy were putting him down and ignoring him while teaching the other children in his class. The teachers were initially suspended, but after the suspension was up they returned to the same school, but were assigned to a different class. The boy's mother, finding this unacceptable, pulled her son out of school until the teachers were again taken out of the school and put on suspension until their ultimate fate is decided by the school board.

Both of these stories infuriate me and pull at my heart, as I would expect them to for any mother, or any human, for that matter. As a mother of a special needs child in a wheelchair, they scare me. Right now Ian only goes to school half-days, but someday he will go all day. Both the mothers of these two boys said they thought their sons were being completely included and cared for while they were at school. Just when you think you can trust the teachers you leave your child at school with every day, a story like this makes you doubt who your child is spending their days with. It's difficult for any parent to entrust the care of their child to a person that isn't them, but for parents of special needs kids it can be even more difficult. Our kids have more needs and more challenges than others. As their parents, we have to take these in stride. No matter how much we love our kids, we can't force other people to love them, not even their teachers and/or caregivers.

My takeaway from these stories is that, as Ian's parent, I must be extra vigilant in monitoring who is with my son while he is at school. Over the course of this school year I have gotten to know all of Ian's teachers, aides, and therapists, and am 100% confident that they are taking good care of him and doing a great job teaching him while he is at school. He is happy to go to school in the morning and happy when I pick him up again. Many of the people who are working with him this year will be doing so again next year when he is in 4K, but there will also be new teachers and aides in his life as well. When the school holds its open house in August before the start of the term, I will be the first one there waiting to meet them and introduce them to my wonderful son. After that, all I can do is keep a close eye and step in if something doesn't seem right.

Friday, March 23, 2012

Cuts, cuts, cuts

This week we had Ian's IEP (Individual Education Plan) at school to go over what he'll be doing next school year when he is four years-old.
Some background: for three year-old kids with special needs, our school district offers the Early Childhood program. Ian goes four half days a week and it is a small group of special needs kids with a child/teacher ratio of 2:1. The next year, at four years old, the EC kids can move up to 4K, which is half days five days a week, if they are ready. In addition to 4K, which is all "typical" kids and a class of 25 kids with one teacher and one aide, the EC kids can also return to the small group EC classroom for the other half of the day to get more attention and work on particular skills with the EC teachers. This is what we assumed the plan would be for Ian next year.

So, at the IEP, we learn that the EC classroom is being cut out of the program for EC kids going into 4K next school year. The plan for Ian was to put him into the 4K classroom with about 25 other kids. The end. He would still get his therapies as usual, but all in the context of the 4K classroom only. I do want Ian to be in the mainstream 4K classroom next year, but I also want him to be able to have time in the EC classroom where there are fewer kids, more teachers, and more time to work on skills, as well.

Then, we found out that Specially Designed Physical Education is also being cut out for 3 and 4 year old EC students. SDPE is Ian's favorite part of school, and he absolutely loves his teacher. This teacher gets Ian to work like most people cannot, and we've seen so many gains in his upper body strength since he's started the program that the department developed for him. To find out Ian would miss out on this beneficial program next year in 4K was so disappointing.

After I sat with this new information for awhile, I decided that it was unacceptable to be cutting programs from these kids who need them the most. I looked up the e-mail address for the Director of Pupil Services for the district and sent her an e-mail explaining Ian's situation and my disappointment in the decision to cut these programs for him and other EC kids. She responded by asking me for my phone number and then we had a phone conversation in which she explained why she had made these changes. I disagreed with her on almost every point. She's never met Ian or any other of the kids in the EC program. She made these decisions without the input of the teachers or the parents of these children. To me, that isn't right.

The next day I talked to some of the other parents with children in Ian's EC class and asked them to contact the Pupil Services Director to let her know that they also disagreed with the cuts to the program. That afternoon, I received a call from her. She told me she had spoken to Ian's teacher and during their discussion decided that since Ian and the other EC children had been told they could have 4K plus EC classroom when they were four, they would receive that service. The same was true for SDPE. Obviously, I was happy about this news, but I was still concerned about the future kids that would be coming into the Early Childhood program. Would they be able to have 4K plus EC in the future? Of course, she wouldn't answer me and would only tell me what Ian would get, not any other children. I took that answer to mean "no", so the battle will still continue on that front, but it was definitely a win for Ian and the other EC kids going into 4K next school year.

It felt good to get a win.
Ian's first day in EC classroom

Sunday, March 18, 2012

6 Things Parents Want You to Know About Our SB Kids

One day, out of curiosity, I posted a question on a spina bifida page I'm part of asking what parents wanted others in society to know about their kids. These are the responses I received, including one I wrote myself, of course:
  1. You can let your child play/talk to my child. He won’t break and it’s okay to ask questions. Ushering your child away when they approach my child only teaches your child that kids like mine aren’t people to be friends or playmates with. Plus, it’s hurtful to my child.  – Nicole, mom to Ian
  2. People don't need to say they are sorry my child has a disability. I want them to understand that my child is amazing and perfect, and not someone to be pitied.  – Jamie Lynn Veprek, mom to Madi.
  3. I wish people would understand that he is a person just like everyone else, has feelings, and is just as capable to do things. Even if he does them slightly different.  -- Kirby Winward, mom to Tanner. www.raynstarwinward.blogsp​
  4. Please don’t ask very personal questions about my child in front of them. They can hear you and they understand you.  – Jamie Lynn Veprek and Star Kirby Winward collaboration
  5. Their life is worth living. They are happy and just as valuable to society as all other people.  -- Dawn North James, mom to Elijah
  6. Perhaps one thing people need to know is to watch their toes because Trevor is rolling in!  -- Dave Conklin, dad to Trevor
So, there it is world!

Tuesday, March 13, 2012

Potty Time!

Today brought another fun-filled day at spina bifida clinic for Ian. By some miracle, I was able to get my husband, Ian, and 11 month old daughter to the hospital clinic building by 7:45am for Ian's renal ultrasound and x-rays. I think we were all still half asleep, but we were half asleep in radiology on time!

The clinic day was successful, by clinic standards. What I'm really happy about though is the progress we're on the cusp of making in the urology department. Since Ian was two years old, I've been asking his urologist when we can start potty training with him. The answer has always been that he isn't ready and we have to get his bladder schedule under control before we starting thinking about potty training. Today was different. Today, I went into clinic prepared to hear those words again, but to tell the urologist that I was going to potty train him anyway. Ian's bladder doesn't contract properly to let him empty himself, so Justin or I use a catheter to empty his bladder four times a day. "Potty training" for Ian basically means he would cath sitting up on the toilet instead of laying down in a diaper. I think he's ready, with the right seat, of course. He needs a potty seat with lots of support so he doesn't fall off. I questioned other SB moms to find out what worked for their kids and found out about a seat that looked perfect for Ian. I took that information to clinic today, prepared to battle for the right to potty train. And...his urologist said it was a great idea and wrote up an order for the seat I had requested. No problem.

I can't wait to get the seat and get Ian started on it. Until it comes, I plan to work on getting Ian excited about using the potty. I see some potty-related story time in our future!

Sunday, March 4, 2012

Boy on a...Bowl!

This past week we finally got a snowfall that stuck around for more than 12 hours. On Saturday, we took Ian sledding around our yard. He can still fit in the 12-18 month size snow pants and boots that we got him more than two years ago. He’s a real money-saver in that regard. We put him in an infant sled (the kind that has a rounded backrest and a seatbelt) and pulled him around in the fresh snow. He liked it a lot, until he dumped out of the sled and went head first into the snow. Then, he liked it just OK. He really started having fun once Justin started making snowballs and throwing them at the basketball hoop. He loved the “thunk” sound they made as they hit against the backboard. And the explosions, oh!, the explosions! The explosions of snow when they hit was just gut-busting to him! Hearing him laugh hysterically about a snowball hitting a basketball backboard made my day; he gets such pleasure out of such simple things.

Today we took Ian bowling for the first time. One of my good friends told me about a bowling alley in our town that has ramps for little kids to use to roll the ball down the lane. She thought it would be perfect for Ian to use from his wheelchair, so we reserved a lane and all went this afternoon. Ian loves Wii bowling, so we were pretty sure he’d like the real thing. It combines two of his favorite things: balls and things getting knocked down. He watched both Justin and I take our turns, and then we pulled the ramp up to the lane for his turn. He eagerly wheeled up to the side of the ramp and pushed the ball down when we told him to. Each time the ball hit the pins he would pump his arms up and down triumphantly! (See his cute little video here) He got a couple of strikes and even beat his own mom both games! Afterward, he was tuckered out, but proud of himself for bowling like the rest of us. I was so proud of him; I love seeing him get to try new things and really enjoy them. Some days it’s hard not to think about all the things spina bifida and his wheelchair could hold him back from being able to do. Having days like today when he can participate and have a lot of fun make those other days a bit easier.