Thursday, January 31, 2013

Three Little Words Reprise

A little over a year ago, I wrote a post about Ian's slow speech progress. At the time, he said only 3 words. Now, a year later, he has more words than I can keep track of! He's come so far over the past twelve months, thanks mostly to a combination of school, speech therapy, and a little sister entering the picture. I was thinking about all the different things he can say now that he couldn't just last year, and what motivators were in place to make him say a particular word or phrase.

1. The Love - I believe these words were motivated by Ian's love for particular people. He saw how happy it made Justin and I that he could say "mom" and "dad" to us, and he worked hard to make others in his life happy by saying their names too. He now says Dia (his sister, Lydia), Bapa (grandpa), Gaga (grandma), Noah (his best friend in 4K), Niki (his EC teacher), Em and Al (aunts Emily and Alyssa). There's still plenty of family and friends to learn - hopefully by next year he will be able to say many more!

2. The Want - There's no better motivator than just plain wanting something. Though whining, pointing, and signing had been working for the most part, Ian has learned to say the words that can express what he really wants. I believe the first one was "Bobby", which is shorthand for SpongeBob. After that he said "iPad" and "DS" (as in Nintendo DS) - his two most-requested objects. Next, we started working on asking for things with a full sentence, and last week he mastered saying "I want _______" and then signing "please". That was a big break-though.

3. The Mimic - Ian is both lucky and unlucky that his sister is a little jabber-jaw. She started talking early, and once she started, she never stopped. She overtook him in the speech department easily, but the upside is that he is now copying some words she says. If Justin or I leave the room, Lydia usually follows us, yelling "Wait! Mommy! Wait! Daddy!" After a few weeks of her doing this, Ian suddenly said "wait" one night as I was walking out of his room at bedtime. Now he tells me to "wait" almost daily. His words for his grandparents (bapa and gaga) were actually coined by Lydia, and he copied her in saying them.
A brief moment of brother/sister love
4. The Academic - This category is probably the most important - words/sounds Ian is trying really hard to say for school. He can say almost all the letters, (C, L, Q, W, and Z still allude him) and almost all the letter sounds. He can say the numbers one, two, eight, nine, and ten, (the others he still shows on his fingers) and the color white. He still uses Proloquo2go a lot at school, but he's got a lot of these basic speech concepts down, and I just know more will follow.

The best part of all is that Ian is becoming more conversational with his speech. He says "What?" when you say his name, and "I do" or "I do not" when you ask him something. My hands-down favorite though, is "you too". When I drop him off at school in the morning I say "Have a good day" and he says "You too". I say "I love you" and he says "You too. Bye Mommy." It's not the full "I love you" that I've been waiting to hear for almost 5 years, but for now it's close enough, and I cherish it every time he says it.

Here is a little video of him showing off his words:

video




Friday, January 25, 2013

Inclusion/Exclusion

A few weeks ago, Ian came home from school with a flyer for little league in his backpack. It listed three days in January that you could register your child, and it listed the teams by age groups. I saw that there was a T-ball team for 4 and 5 year-olds. OK, perfect, he can play T-ball with his peers. Further down the page, it listed a "special needs" division for ages 6-18. Alright...well, he's not 6 yet, so he'll do the T-ball...right? I wasn't sure which division Ian should belong to, so I went to the leagues website for more answers. There were none. The website listed the same information as the flyer - no descriptions of any of the teams, not even the "special needs" league. Luckily, there was a contact page, so I was able to get the e-mail address of the T-ball coach. I explained the situation we are in with Ian, and basically asked if Ian should play on the 4/5 T-ball team, since he was not yet old enough for the special needs division.

Long story short, the league went back and forth - never telling me Ian could play for either team. They were checking to see if a 4 year-old could play on the special needs team. I questioned why he couldn't just play on the T-ball team - neither the website nor waiver form I downloaded said anything telling me he couldn't play on that team. I thought other kids from his 4K class would probably be on the T-ball team, and I wanted him to be able to play with them. It's just T-ball for 4 and 5 year-olds...it's not serious baseball, right? He's just a kid in a wheelchair - he can still play. After weeks of waiting around for an answer, the league finally told me that Ian couldn't play on the T-ball team, but he would be allowed to play on the special needs team. By the time they got around to figuring that out, all the registration days were over. I told them that, and they responded that we could register Ian anyway. By then I was so frustrated from the back-and-forth that I didn't even want to deal with the league any more. Maybe next year.

I'm feeling torn on this issue. 

On one hand, I want Ian to be able to play with his friends, on their team. I've made my peace with the fact that Ian is not destined to play MLB baseball, but why can't he just play on the T-ball team with the other 4 and 5 year-olds? Why does he have to play on the special needs team? I feel that Ian is being marginalized by only being allowed to play on the special needs team - especially at this young age. 

On the other hand, it's probably a small miracle that a special needs team even exists. Kids who otherwise would never have the opportunity to play baseball can experience the game and a team in a no-pressure atmosphere. I shudder to think that Ian would feel uncomfortable on the T-ball team because he is not physically on the same level as the other kids. I want him to be on a team where he feels normal and accepted. 

I guess, at the end of the day, I wish that I as the parent could choose the team for my son. Honestly, I probably would have chosen the T-ball team for him this year. If he didn't seem to like it or feel part of the team, we could have tried the special needs team next season. 

It's wonderful that special needs programs exist - especially for things like sports, which can feel impossible when up against a physical disability - but it also seems like it can be a way to pigeon-hole kids like Ian. It doesn't really feel like full inclusion when you're forced onto a certain team because of a difference. It's double-edged sword, really. 

Today a soccer mini-camp flyer came home in Ian's backpack. It's only 5 practices for kids from 4K to first grade - just to learn the game and have fun. Even though Ian already plays TOPSoccer, I'm tempted to just sign him up for it and take him on the first day to see what happens. 



Wednesday, January 16, 2013

Not There Yet

For a few months now, I've been kind of avoiding the spina bifida online groups that I used to frequent. It wasn't a conscious decision, just something that happened. When I first discovered them, I couldn't get enough - I asked tons of questions, read through hundreds of others' questions and responses, and sometimes even chimed in with my two cents. I felt a sense of community - these parents are going through what my family is going through. These parents "get it" when I bring up hydrocephalus, or chiari, or shunts. They understand cathing, urodynamics, HKAFOs, and IEPs. I would read the threads for hours at night after the kids had gone to bed - gobbling up all the information I could from other parents who'd been where we are now. Then, I stopped. 

I never really gave a lot of thought as to why I stopped visiting and participating in the group, but I was talking with someone about the online support groups recently, and that conversation gave me the opportunity to really think about everything. What it came down to is something I don't like to admit - what it came down to is that the other parents in the group seemed to be in a place of acceptance about their child's spina bifida, and I wasn't there yet. 

I wasn't there yet as far as accepting and being "OK" with my child having spina bifida, and I'm still not there. Five years into this ride, (Ian was diagnosed at 20 weeks in utero in January 2008) I'm still mad and sad and worried about my child having spina bifida, and I just can't seem to relate to other parents who are so accepting of it. I don't believe God gives special children to special parents. I don't believe God only gives you what you can handle. I don't believe God is testing me. I don't believe God has anything to do with it, whatsoever. I have nothing against those who do believe those things - I just can't relate to that. I still need to work on accepting Ian's spina bifida on my own terms, and I'm not there yet.

If I had a question I needed answered, I wouldn't hesitate to go to the group and ask - it has been very helpful to me in that regard - I just realized that I cannot use the group as my main source of support. I'm not there yet. I'm glad other parents who are dealing with their child having spina bifida can accept it and make peace with it - I'm not there yet. I hope to be there someday, but I'm not there yet.



Tuesday, January 8, 2013

Tidbits II

Just a few things to share:

This week I got my Parents magazine in the mail, and was delighted to see the adorable Emily Keichler on the cover. Emily is 3 years-old and has spina bifida, like Ian does. When I showed Ian the cover, he immediately pointed to her walker, then said "Ian" and pointed to himself! He identified with her! It was a pretty cool moment.

Ian checking out Emily on the cover of Parents

According to an interview with Parents editor Dana Points that I read on another special needs blog I follow, this is the first time a child with a visible disability has appeared on the cover of a national parenting magazine. What's even better about it is that Emily isn't on the cover because there's an article about spina bifida - she's just on the cover because she's adorable! She's a real kid, just like any other - disability or no. It would be awesome if other magazines and advertisers would jump on the Parents bandwagon and show more people with diverse abilities on their pages. Doing so could go a long way in furthering social acceptance of people with disabilities.

While I'm on the subject of social acceptance, I'd like to mention the International Day of Acceptance on January 20th. This day of spreading knowledge, love, and acceptance of people with disabilities was started by a great company called 3E Love. Last year was our first year participating, and we had a great day filled with lots of love and support for Ian and our family! This year we will be wearing our 3E t-shirts, pins, and bracelets to show support and raise awareness! I can't tell you how many people have come up to me and asked me what the symbol means when they've seen it on my shirt or car. I'm so happy to be able to spread the message, and I hope many others out there will join us as well!




Last, but not least, I wanted to share a very moving video that I watched this morning via Love That Max. It's about a high school teacher who does a lesson each year on what it's like to care for his 12 year-old son who has special needs. I think that whether you have a special needs child in your life or not, this video is worth a watch.



Tuesday, January 1, 2013

Rolling Into 2013

Happy New Year! I hope your holidays were both fun and stress-free (if that's even possible). 

I wanted to do a post about what I'm looking forward to for Ian in the next year, but I ended up going back and looking at past posts - reliving the ups and the downs. Here's what I thought were a few of the highlights of 2012:


Happy One Year of Blogging to me! I wasn't 100% sure I'd be able to keep up with it when I first started, but it's been fun - and even helpful - for me.

Who knows what 2013 will bring for Ian and the rest of our family, but here are a few things on my radar for the next year:
  • Completing Ian's IEP for Kindergarten in Spring
  • Ian's 5th birthday in June - we're going to try a party with friends this year
  • Ian starting Kindergarten at a new school in September
I hope 2013 brings more independence and progress for Ian. He's come so far this past year, and I'm so excited to see where another year will take him.