31 May 2013

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!

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23 May 2013

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.
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17 May 2013

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.

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08 May 2013

Bye Bye Preschool

Liam is hitting a big milestone this month. He is finishing up his preschool years and will be leaving behind the slew of therapists and teachers we've come to know and love over the last few years. We will be saying good-bye and starting a new adventure with new therapists and new teachers when he starts KINDERGARTEN this fall.

We have had some tough decisions to make as to what is in the best interests of Liam for his education. I have felt pressure to put Liam in the school setting for numerous reasons, with the most important reason being that he would be able to learn (which he loves to do) and be visited by therapists better than what he could receive at home. If we decided to homeschool Liam like we do our other kids, Liam would only be able to receive minimal services from already overloaded therapists who would have to take their primary caseloads first then fit Liam in if they could. UNLESS Liam would be determined medically unfit for school, then he would be a primary student for them and would receive proper amounts of services.

Liam isn't medically fragile though. It can be said that there is a definite safety concern because he does have an airway issue that remains a high concern for me. He also has a tiny issue I might have mentioned here before: he throws up a lot. Last year, I felt that the teachers and therapists didn't feel Liam needed a one on one and was told it's very unlikely he would get one (that it's very rare) which had me very, very concerned about sending him off to kindergarten. After that IEP I let the school year transpire with out much concern about kindergarten. I knew I wouldn't feel safe leaving Liam without a one on one and figured I would be telling them as much when the end of this year came around.

We are now gearing up for a final big meeting to prepare everyone for Liam's arrival. There are a lot of reports to go through. His file is huge. He isn't a simple placement. He could honestly go either way: home bound or in a special needs classroom. We could surely have the airway concern and vomiting issue be such an issue that it allows Liam to be home bound. Or, we could insist on the one one one so that Liam is getting the proper care while receiving an education that Liam deserves.

However we decide, there has been numerous therapists, teachers, psychologists, and us parents going over all of his files and wanting to do what's best for Liam.
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