That Sweet Head of Hers

Caleigh's head positioning is something that I think about daily. This is something that we have been working on from the beginning. I've posted about it here on several occasions. Caleigh's head is usually down and leaning to the left. 

It's visual, it's sensory related, it's a learned habit and she doesn't do it all the time. It is what it is.

Just in the last 6-8 months Caleigh has really started to mouth things. Her progress with all of her equipment slowed to a stand still due to her licking and chewing. She would just hang out and chew. Her day would be complete and she could care less about anything else except that sensory input. Sure, she could hold her head up nice and straight, but why would she if she can get that wonderful sensation from mouthing what's right below her?

We've talked about it with her. She says "feels nice," "good" and "I feel happy."

Why would I want to take away what makes her feel happy?

All of her equipment has a chest harness, and that is what she chews and licks on because it's easier than making her arms and hands cooperate. My major concern with this came when her habit of mouthing things carried itself to our van. I drive around praying we don't get in a wreck because her head is almost constantly down chewing and licking the harness in front of her. When her favorite songs come on the radio she perks up and sits up straight. I feel like the head lift DJ everywhere we go; trying to find the perfect song that makes her hold her head up. It worries me. So when this all started happening I began ordering neck collars to support her head while we are in the van.

We ordered and returned several rejects before finding one that would work with her car seat, and allow her head to be safely back against the head rest at the same time.

This neck ring is made by Danmar and it's called a swirl collar. The listing talks about allowing the user to still be able to move which was a bonus in our case. Caleigh moves a lot and she likes to be able to lean her head to the side. I called and talked to the company about the product just to make sure it would possibly work. They were extremely helpful, and even offered a custom neck collar if the standard, off the shelf version, didn't work out.

I can't tell everyone enough how much I just love this collar. It took a little bit for Caleigh to get used to wearing it. The collar basically sits on her chin, sternum and collar bones. The area at her neck doesn't have any material touching it. It's soft, and easy to clean. Caleigh can still hold her head down and turn from side to side. Eventually, we may look into a custom version, but this one really seems to be working.

Caleigh's doesn't mind it at all. She says that she likes it and that it helps her when her head is tired. I was thinking it would be a hard transition taking away the mouthing but she's done well with it. We've added in extra oral motor time for her as well.

It's allowed her to use her stander more appropriately. She's finally taking steps in her walker again. It gives her a chance to interact with what's going on around her instead of going to her comfort zone. Most importantly she's safer in our vehicle. As strange as it may look fashion wise, it's a keeper.

If anyone needs a neck model for accident and injury lawyer commercials.....our girl is open to reasonable offers....

RISE Adaptive Sports

This past weekend Caleigh went kayaking for the first time! We have been planning this day for over a month now. RISE Adaptive Sports is a local non-profit organization that provides inclusive adaptive recreational sports. Name the sport and they adapt it. Most of all, participating is completely free to families. This particular day was their Kickin' off Summer Bash IV; where we got to see and try out most of the sports that they offer.

The day was perfect. It was beautiful, but seriously windy. We started by checking out the petting zoo, kayaking, then took a boat ride. We then ended our day by talking to some of the vendors that were set up.

Caleigh was very excited about the whole thing. After all, we have been talking about it forever. Eric and I love to kayak. We've talked about taking Caleigh out on the water so many times, but we always chicken out. The how's and what if's were too many. Maybe the fear of "what if" was too much. With the reassurance of the volunteers we were set to go. Caleigh loved kayaking the most when I asked her. Probably because she was the most fresh and awake. The further we got through the day the more tired Caleigh was. She had missed her much needed nap and the wind was taking its toll. 

The event was pretty large. There were a lot of people of all abilities that came. Young and old alike, it was a neat feeling of belonging. Although, I had several people, who are also wheelchair users, ask me if Caleigh has CP. I guess even in the wheelchair user community there are sub-categories that everyone needs to be put into. It was an interesting dynamic, and not really necessary at all. All within human curiosity I suppose. I think the only other time we've been around so many individuals, that use wheelchairs, was at the Abilities Expo. It was really nice actually.

Now that the opening of the season has started we will be able to take Caleigh weekly for whatever sport she wants. Kayaking is definitely on her list.

We talked to the power chair soccer person and plan on attending some of their practices. Maybe someone else giving Caleigh driving tips will be beneficial. Along with seeing other users in action, we will also be allowed to get in a chair and play with her. Something I can honestly say I haven't done.

We had a great family day and we were all properly exhausted when we got home. What an amazing organization for us to utilize. We can't thank them enough. This summer will be a great one for sure thanks to RISE Adaptive Sports.