Thursday, December 29, 2011

Sister for Sale

Ian's little sister, Lydia, is going to turn 9 months old next week, and is currently going through a very draining stranger-danger plus separation anxiety phase. Christmas was especially hard; we were away from our house, off our schedule, and with a lot of extended family she didn't know well. She wouldn't go by anyone else, not even my mom, and wouldn't be set down at all. By the second day I was at the end of my rope, at one point calling our situation "Fatal Attraction with a baby".

At home on a normal day, Lydia is a completely happy baby, as long as I don't try to put her down anywhere. I cannot empty the dishwasher, put in laundry, or make any meals without her wailing, even if she is in the same room as me! Ian has taken to plugging his ears with his fingers when Lydia is crying. I feel bad for him because while I'm constantly holding or occupying his sister, he is having to occupy himself. Ian is very easy-going, so as long as he has an activity he doesn't mind being left to his own devices. I just worry that I'm not giving enough of my attention to my child who probably needs it more than most. Hopefully Lydia will grow out of this phase soon!

Today, Justin put together a toy Lydia got for Christmas, and once it was up and going, she was very interested in it and sat on the floor at my feet and played with it for a little while. She kept looking up at me to make sure I was still there, but her butt was actually touching the floor, so it was progress! Ian seemed to like the toy too, so we put him on the floor beside his sister and they played together long enough for me to take a few pictures and a little video. It was a special brother/sister moment, both for them and for Justin and me.

I hope that as time goes on, Ian begins to see his sister as a playmate and friend, instead of a loud, crying, annoyance. She's still too young to play with him most of the time, but when they were playing together today it felt like maybe we were getting a little glimpse into the future...it looked pretty good.

Wednesday, December 21, 2011

Home, Accessible Home

The other day, Justin showed me a page in the newspaper highlighting a house for sale. I wasn't really that interested in looking at it, but then he told me that the house was custom built for a family that had a child with special needs, so it was completely wheelchair accessible. The pictures in the paper looked really nice, so we went online to look at the listing. That was when we saw the price. Out of our price range. WAY out of our price range. We're talking almost three times what we paid for our house two and a half years ago. It was disappointing, but also a little expected. The house was large, new, and on a huge plot of land.

We bought our current house when Ian was a little over a year old, and it took us forever to find because we were really specific with what we wanted and needed. The house had to be one-story and we wanted hardwood floors to make it easier for Ian when he got a walker, wheelchair, or whatever mobility assistance he would need. Now that we're here and Ian has a wheelchair, we're finding that our house leaves a lot to be desired in the way of accessibility. All of the entrances have at least two steps to enter, making it impossible for Ian to get into or out of the house himself with his wheelchair. This problem has an easy fix because we can build a ramp for him. The problem that will be more pressing in the coming years is the bathroom. Besides having a counter, sink, and a tub/shower that will not be accessible to him, it is long and narrow. Even if he could get into the room with his wheelchair, he wouldn't be able to turn around to leave, or be able to open any of the cupboards or drawers while being in there. While this isn't a big deal now since he isn't toilet trained, it is something that will eventually need to be addressed as he grows. And not only will he grow, but his wheelchairs will also continue to grow, so the space problem will only get worse over time.

It has always been our dream to build our own house, but since we've had Ian the dream has changed to include a house that is totally accessible for him. Hopefully we can make it happen before he turns 18!

I'd love to hear about other's experiences with building and/or buying a handicap accessible house!

Monday, December 19, 2011

An Apple a Day...

Christmas is less than a week away, and no one is more excited than Ian's grandmother, my mother. She decided to get Ian an iPad for Christmas, and no amount of reasoning would change her mind. She has one herself and Ian just loves playing with it, so she could not resist getting him one of his own -- both to benefit him and to get his grubby, little hands off hers! I personally think a three year-old having a $600 electronic device is crazy, but I'm not in the business of telling my mother how to spend her money. She bought the iPad before Thanksgiving already, so she's been bursting at the seams waiting for Christmas ever since.

While Ian's main attraction to the iPad is the fun games (he is a true Angry Bird prodigy, I think), I am looking forward to all the learning apps we can use to help him not only learn letters, numbers, etc., but also boost his fine motor skills. Ian has trouble handling a spoon and fork well, and usually resorts to eating with his hands, so if he can work on his hand strength and coordination with his iPad, then it will be worth it. We're also looking into a program called Proloquo2Go, which is a touch-to-talk app that would help Ian to communicate what he cannot sign. To keep him from going overboard with it, we plan to have him earn his time on it by displaying good behavior, namely not hitting and not throwing temper tantrums.

I know Ian will be so happy and excited to open that iPad on Christmas day. Justin and I purposely didn't get him many other presents because we know he will be disinterested in all other presents once the iPad arrives -- and we can hardly blame him! Hopefully it proves to be a helpful tool in his development, and not just an expensive Angry Bird player!

If anyone else uses an iPad with their child (special needs or not), I'd love to hear about your experience and apps you like!

Saturday, December 17, 2011

Training Wheels

As with any child, new freedom is both a good and challenging thing. On the one hand, new freedom lets the child grow, move on to the next step in life. On the other hand, new freedom is many times extra work and frustrations for the parents of the child. This is a situation we're entering with Ian. He's had his wheelchair since August, but its use has mostly been restricted to school and our home. Since his maneuvering has improved so much in the past months, my husband and I decided it was time to introduce the wheelchair to more everyday life situations. Like Target...on a Saturday...in December.

So, with our eight month-old daughter perched in the cart basket and my sister-in-law in tow for extra adult support, my husband and I wheeled Ian into Target to pick up some essentials and finish our Christmas shopping list. Ian has been in our local Target store enough to know where the good stuff is, so as soon as we were inside the entrance and had our hands off him, he started for the back of the store -- where they keep the toys and electronics. Once there, we found that it was very crowded, so we wanted to get out of there as soon as possible. Ian apparently had his heart set on seeing the wall of TVs, so he took off down the aisle in that direction, showing no concern for the people crossing back and forth in front of him. Most people are very surprised at the site of such a little boy in such a cute, little wheelchair, so they mostly smile and jump at the chance to get out of his way. Problem is, we're trying to teach him to be considerate with his wheelchair in public. When we stop him from going where he wants to go, he sometimes screams and puts up a fight, much like any other child would in that situation. Things are sometimes different for us with Ian, but many times they are the same as they are for anyone with a young child.

I look forward to the day when Ian can wheel beside me in a store or at the zoo, instead of me pushing him to keep him on track. I know the day will come. If anyone has been there or has any stories or tips, I'd love to hear them!

Friday, December 16, 2011

Getting to Know You

Hello!
My name is Nicole, and my Boy On A Roll is Ian. He is three and a half years-old and has Spina Bifida. Becoming pregnant with my son changed my whole life, and then finding out he would be born with Spina Bifida changed it again.

It has been a long, difficult, rewarding, and awesome journey so far, but there's still a long way to go; he's only three! Ian began using a wheelchair this past August, which was a huge change for both him and me!

That's all I can say for now; I have to go pick him up from school!