Didn't see that coming.

Holy diagnosis, Batman!  I got an email to log into our Blue Cross Blue Shield account because new information had been added for Liam. I've never gotten a notice like that so I logged in to check it out. I found a page that I didn't even know existed. It's a list of everything that Liam has ever been diagnosed with. It's creepy scary. 

A personal health record, with line after line of issues.  Some of them aren't even true and when I click on them I am able to say he either no longer has the issue or delete it entirely. Like 'cerebral brain deterioration'. What the... I don't even know how that's there. His brain isn't deteriorating, nor has it since the day we brought him home. That's NEVER been a diagnosis that I was aware of.

Delete.

Tooth loss? He's not even lost his first tooth yet.

Delete.

TB-related miliary fever?  Nope.

Delete.

Complication of medical care?

How is that a diagnosis??

Delete.

 It's also interesting to look at who listed each diagnosis in his chart. Some are the medical supply company, the medical equipment company, some the therapists, some his doctors, and some are even from the pharmacy.  The pharmacy? I don't even know how they can list a diagnosis.

What's funny is that years ago, if I would have seen this list, I would have freaked out. I would have been sad, looking at a bunch of terms that the world has to use to define my son. It's a lot of medical terminology and scary sounding words (muscle wasting, anyone?). But I look at this list now and I don't see each individual diagnosis. I see an amalgam of terms that can't even begin to remotely describe my boy. He is not defined by his diagnosis, we certainly don't define him that way. He is unique, wonderfully created, and so much more than a sheet of terms could ever describe.

Halloween-n-dreams

I wish I could plan something in our community for the special needs kids at Halloween. This holiday can be the toughest of them all for our children. There are numerous issues that can impact a special child's ability to enjoy this day:

• sensory issues (not able to wear a costume)
• non-verbal (can't say trick-or-treat or say it well)
• motor planning issues (can't get their hand into a bowl)
• fine motor skills (can't pick up the piece of candy)
• wheelchair bound (can't even go door to door to participate)
• vision impairment (self explanatory)

Just one of these things can seriously impact a child's enjoyment of this holiday let alone having more than one thing on that list (which is by no means exhaustive).

Liam has several of the issues on that list that prevent him from enjoying Halloween. We try to make the best of it, but there is not a neighborhood anywhere around where he can go from door to door in his wheelchair and participate in trick-or-treating (narrow paths, steps, uneven walkways, etc. not to mention Halloween decor that he will grab and take with him). And everything is so dark he can't see what's going on very well either.

If I were able to plan a Halloween for our kids I would love to have trick-or-treating take place in the mall. It's bright, open, wheelchair accessible, and could give many special needs kids a safe place to trick-or-treat. There could be numerous ways in which to give kids a chance to go 'door to door' inside a mall (have booths set up, tables, refrigerator boxes for houses, etc) and let them experience Halloween in an environment better suited to their needs. How cool would that be for them...

We took Liam to our church's fall festival this year instead of going with his older siblings trick-or-treating. He wasn't having much fun though and had been coughing, getting progressively worse as the evening progressed. By 7:15 he was conked out and running a fever. So much for showing him how much fun Halloween can be by getting gobs of candy and sharing it with his mom...

He's the Doctor.

Doctor Who?

A witch, the 11th Doctor, the Tardis, zombie, & a hobbit.

The Doctor is out.

Special needs kids truly have unique, different needs that can be misunderstood and overlooked. In the midst of the chaos of trick or treaters, costumes, and candy, are a large minority of kids who just want to participate but can't.

Books for special people

By being considered legally blind, even though Liam has some aspects of vision, means he qualifies for a program called the Seedlings Braille Books Book Angel Program.

Every year, qualified kids like Liam, can apply to receive two books completely free of charge. These books have been outfitted with braille type in order for blind children to have access to books that they can read.

They have a large list of books to choose from and I usually check with Amazon to see if any of the books listed would be visually appealing to Liam. Because Liam is 'blind' he loves to look at bright books, books with out busy backgrounds or pale colors and books that have a sensory aspect to them (noise or touch).

This is Liam's second year to receive the braille books.

We received Good Morning, Good Night which has textured pages and big pictures of animals which Liam loves to look at. And What Do You Say which is right up Liam's alley because he knows all the animals sounds.

You can see the braille type on the photo if you look closely.

Liam loves to feel the braille. I have to hold his arm in place so he can explore with his fingers but he loves to take his fingers and touch it. Whether he needs to read braille someday or not, with this book program it gives his senses something else to explore.