A little piece of heaven

So much going on.

So much more to do.

So much hard work ahead of us.

So much to be grateful for.

We’ve ditched the wheelchair. The last few days, we’ve only taken Nathan out in his Pony Walker. Why push him around when he can get himself around???!!! It may look like we’re pulling him, but I pinky swear we’re not…we simply hold the leash to direct him as otherwise he crashes into things. But he’s the one moving it.

Yes, he has a long way to go. Yes, his gait needs a lot of improvement. Yes, he still has to learn how to direct it. But the way I see it is…he finally got the concept of reciprocal stepping…finally figured out how to overcome his spasticity and hypotonicity to get himself moving…finally developed the DESIRE to figure it all out…now he has the rest of his life to get stronger and perfect his gait!

Making the car crash is still his favorite page on the Dynavox. Just in case I had people telling me he wasn’t smart enough to figure it out, I want you to observe how he looks at it, then, when he hears the words, he looks at me and smiles, waiting for his reward – the cars crashing.

Notice how he moved his head when he made his selection…he knows exactly what he’s doing, and you can see the effort in his face as he’s “holding” his gaze to make the selection. Notice also that I moved the “car crash” to the other side of the screen, to show that he can get both sides of the screen just as easily, and that he’s not just accidentally hitting the same one over and over again.

Here’s an even cooler thing…he started looking around and exploring various pages…he found the snacks page, and proceeded to ask for his bottle. Sure enough it was snack time and thhe protein smoothie is his afternoon snack. He asked for it twice. So I went and got it and made him do it again so I could film him and share with you guys. He drank it with such GUSTO.

He also started music therapy, and as you can see by his expression, he LOVED it. With his Feldenkrais practitioner, we’ve been working on having him open his hands. You can see that it’s working!

Even with his “bad” hand!!!! The therapist tried getting him interested in other instruments, but he kept looking at the guitar and saying “mo” “mo” “mo”.

So much fun to be had.

So much rejoicing to feel.

So much to be amazed about.

So much to be grateful for.

On Monday we had the IEP meeting with the school district and Nathan’s education team. It was an interesting meeting. I left feeling exuberant…until shortly after I realized that we were still pretty much in the same boat.

In the meeting I expressed my concerns about having an experienced AAC expert working with Nathan, as well as my lack of understanding about why they were doubting Nathan’s cognitive abilities. The team explained that nobody had been able to get a consistent yes/no response, which made it difficult to determine how much he does/doesn’t know.

There was a lot of talk and brain storming and strategizing. The advocate was a wonderful mediator.

What it came down was this: Nathan was labeled incorrectly when he started the program. Apparently he needed to be labelled as “OI” – Orthopedically Impaired. Instead he was labeled as “MD” – Multiple Disabilities. By having the MD label, he did not qualify for OI services, including an Adaptive Technology assesment or services.

Here’s where it gets really fussy for me. The school claims that someone, somewhere, sent them the referral as MD. However I remember his Early Intervention team wanted him in the OI class, not the MD class. In fact the school had already decided placement for Nathan before Nathan’s first IEP – they sent me a letter well before the first IEP meeting announcing that Nathan would be in the MD class, which I think might’ve been illegal. The school administrator said that she didn’t know who sent the incorrect referral. So they took the referral and immediately placed him in that class and kept the “MD” label.

Of course I didn’t think of asking this during the IEP but my question as soon as I got home was – why didn’t they do their OWN assessment to determine what the correct label was?

The school agreed to do a new assessment with the school psychologist and an AT assessment. Once these assessments were made, then we could see about changing the MD label to OI, which would then include the AT expert in his team and it would give him access to new services.

It is SOOO frustrating to me that none of this was done before. I guess it took having an advocate involved. I am glad we are taking steps in the right direction now.

Other than the administrative issues, the team as always was fantastic. His teachers shared their ideas for helping and teaching Nathan. Everyone brainstormed ways to help him. We talked about the Dynavox and how to incorporate it into Nathan’s routine.

The most exciting part was that we incorporated new goals into Nathan’s IEP. There are now 4 new goals – all requiring use of the Dynavox. Once I get a copy, I will list the new goals here. His teacher worked really hard on setting up the goals correctly and I was super excited to know that she’s committed to helping him with the dynavox.

The moral of the story: Ask your school district about how your child is labeled and find out how the label will affect his services. This could make a huge difference. Find out if there is a lawyer or advocate near you to make sure everything is taken care of appropriately from day one, so you don’t waste unnecessary time.

Today has been a day of gratitude for me. Of appreciation for how far Nathan has come along.

So I wanted to take today to appreciate all of you. Your prayers have made this possible. Your support. Your friendship. The love you send our way. The advice. The emails. All of it means so much. We appreciate you very much.

And on the same note I want to apologize. I have not been a very good friend lately. I have not been supportive or responsive. And I feel so sorry for that.

Many of you have emailed me asking questions, supporting us, giving us advice. I get facebook messages and emails and phone calls and text messages…and most of them go unreturned. And it’s eating away at me. I don’t like being this way.

But the truth is I am overwhelmed and barely holding it together. There is so much going on in our lives and it’s all I can do to get through it all. So when I have a small pocket of time at some point during the day I tend to use it to write on the blog. And in the meantime the emails pile up, my voice mail fills up, the text message inbox gets so filled it becomes another email inbox.

Please forgive me for being unresponsive. I am tired. And so busy. And have I mentioned tired?

But as tired as I am, I am grateful. And here. And when I get through this…when I get more than 2 uninterrupted hours of sleep…when I don’t feel like the days are a train wreck….I hope on that day I can catch up with all of you!!!