Tricky Heads

We have spent a long time trying to figure out something we could do to help Liam with his head control with no luck. And faced with a classroom environment for school this next year, we really need to do something...anything.

Working with the DME (durable medical equipment) company in our area, while they try to be helpful, can frustrate even the most saintly of souls. We have had two PT's, the mom, and the preschool teacher trying to figure out what was available, what we could trial, and eventually use permanently to help Liam with head control and we got no where over the last 3 years. Yes, heads are a tricky thing when it comes to equipment (not all head control issues are alike), but having spent the last three years only trialing out one thing is a sad testament to the state our children are in: needing adaptive equipment and not getting what they need. We are getting nowhere. Liam's not an isolated case here. And it's frustrating for everyone involved. I'm not exactly sure where the breakdown occurs, but when you know there is equipment out there that could help your child and not only can you not try it out, no one seems to be able to know how you could go about doing so, you tend to get fed up after a while.

With that in mind I decided to just go ahead and get Liam's Head Pod myself and not wait for medicaid/DME/school, etc to figure this all out.

There is only one licensed distributor in America for the pod and it ended up being cheaper than I thought. Still pricey at $330.00 but when compared with Liam's neoprene chest strap on his wheelchair (you can see it in the picture below) costing $375 to replace, you can see how the Head Pod is a steal!

It took us about an hour to get it put together and situated just right for Liam. It's not difficult, it's just having to piece together everything and figure out what sizes he needs and where it all goes.

Liam was patient and tolerable for the first half hour but the second half he started to get upset. The strap kept slipping off the back of his very flat head and I was afraid the Head Pod wouldn't work right due to him not having a nice bulging occipital lobe.  We found out that if you strapped it tight enough, he starts to look like a Shar Pei. And even though his forehead is covering his eye balls, his head is up! We're looking on the bright side of things here.

The device comes with several adaptors for the unit to be used on different pieces of equipment. We still need to adjust this area because it isn't ideal yet and the unit will come apart when Liam bounces around. But this is a definite step in the right direction for Liam and proper positioning. His PT and preschool teacher saw it for the first time today and they loved it. Ideally Liam should be spending copious amounts of time in it each day to help him build his muscles and strength and stamina. I got two hours out of him today so he's already getting used to it and making progress. He can even sit at 90 degrees with his head up for periods of time without using the pod.

The video testimonies on their website are compelling. Liam is different, as always, in that with his CP he moves a lot. He does calm and relax after a while and after having his PT and preschool teacher work with him in it yesterday, the results are pretty promising.

Don't Miss This!

Liam could NOT do this before stem cells. You can see how much of a struggle it still is for him and how he naturally keeps his head down, but the fact that he even tries and can lift it at all is a miracle! NO way could he ever lift his head to save his life before now. And in full disclosure, I am helping him facilitate lifting by rubbing his back, but he is lifting his head entirely all by himself here!

It's decided...

I am grateful to have had a fantastic preschool teacher for Liam for the last two years who was not only comfortable with kids as immensely challenging as Liam is, but also was willing to try new things, ask questions, and say she didn't know the answers but would find them.

We are going to dearly miss Ms. Lori next year. Liam will be leaving the preschool program and will be heading to Kindergarten. I posted before about how Liam really could go either way with his education; continue it at home having therapists come in or have him try school in a special ed classroom where he would be able to receive his services at school.

After a 2 1/2 hour IEP is was determined easily and without issue that Liam would benefit most in a classroom with his own 1:1. We are going to start out slow and Liam will only be going from 9:00-12:30. But even with such a short time, it is imperative that Liam have the appropriate help necessary in order to help him progress and grow not only socially but educationally as well. He desires to play and learn but can't quite accomplish tasks without the help of two people for the most part.

I have no idea who the one to one will be but I am praying now that the Lord would send someone amazing into his path. Someone whom Liam can learn from and who can learn from Liam.  I am not joking when I say Liam teaches everyone he meets. Everyone who works with him says that. He truly does teach us all
and this next school year will be a learning experience for everyone all around.

Rubber neckin'

An open letter to all you rubber neckers out there:

We can see you staring. I can see you out of the corner of my eye, that place I don't want to look because I know you won't stop staring. Even though I don't give you direct eye contact I can still see what you are doing. I won't look at you because I don't want you to think that by my meeting your gaze I have approved of your irreverent stare. It is times like this that I am thankful my son is so near sighted and doesn't care about social eye contact. But you see, I don't have vision issues and I can see you staring, practically gawking. Do you think we can't see you or did no one ever teach you manners?

 If I hadn't had to throw my trash away I wouldn't have even given you a second glance, but I had to walk by you to get there and you just couldn't leave well enough alone could you. You just couldn't stop at staring. You had to go to the next level and ask a stupid question. Why? Do you have the same disorder? Then you should understand and start out by saying so and after relating to me I might be inclined to carry on a conversation with you. Does your sister, brother, uncle, friend, or cousin have a condition that looks similar? No? Then you are just asking to satiate your curiosity.

We are not out in public to answer your questions. We are out as a family, even though it's difficult, so we can experience some normalcy like everyone else. We are not here to answer your questions about what disorder my son does or doesn't have. I am all for education but not when we are at dinner. And not when you have been staring so impolitely. And not when you say, "What does he have?"  How insulting. How about a hello first? What do you mean what does he have? That is a big box of alphabet acronyms that you couldn't even translate let alone understand.

If you are so inclined to indulge in your curiosity, might I make a suggestion? In the future, when a person who is different catches your eye, they would be more interested in talking to you if you didn't stare so openly, if you didn't talk about them where they can hear and see you, and if you approached them in a manner they wouldn't find offensive. How about beginning a conversation with one of these starters?

•  A simple hello is a perfectly normal, typical, conversation starter. It goes a long way.
• What's his name?
• How is he doing?
• How old is he?
• My friend has some issues very similar to your son and I was wondering if they were the same.
• I noticed your son was having trouble, is he alright?
• Your son is adorable! I don't mean to sound rude, but I was wondering if you wouldn't mind sharing a little bit about him.
• Ask my son something yourself! He might not be able to speak back to you but you just acknowledged him as a fellow human being and that goes far in my book.

This note might sound snarky and while in a way it is, it is almost certainly an acknowledgment of the fact that I wouldn't ever mind speaking about my son and educating others about what issues he faces if I was approached in the right manner. Don't just blurt out *"What does he have?" as I'm walking by. You would never approach someone with no hair and assume they have cancer and shout out, "Whatchu got?"

* After he asked me what Liam had I asked back, "Who?" He then replied again with the exact same question. I felt like I gave him an opportunity to converse with me in an appropriate manner by giving him a second chance to rephrase or engage but all I got was the exact same question again. Liam was holding a stuffed otter and I reallllly wanted to say, "He's got an otter!" and walk away. Obviously I knew that wasn't the info he was after and I felt a tiny bit of education was in order. So I gave a very simplified response and said, "He has cerebral palsy." He immediately turned to the other guy he was with and that guy said something about so and so having that too. I waited. He didn't say anything else to me and frustrated, I just walked away.