Thursday, November 15, 2012

IEP meeting and BATHS!

Yes, you read that right. Sammy is now willingly taking baths! Finally! We had to trick him a bit, but it has been working. We have started putting Elijah in the bath first, not saying a word to Sam about getting in. Eventually, Sammy decides for himself that, HEY! That looks like fun! And he comes over to join his brother. Only because it was his own idea. I have never known a more independent person than Samson David Porta.

I posted this photo because you can see Elijah's lazy eye here. We especially notice it when he's not wearing his glasses, but it occasionally happens when he is wearing his glasses, as well.

Dan and I attended Elijah's Evaluation meeting and also his IEP meeting this afternoon. I always get nervous about these meetings because sometimes it is hard to hear about all of the things that are "wrong" with our boy. These meetings get much easier the older he gets, and the more I get used to attending them. Back when he was really behind in every area, they weren't so easy.

Today's meeting was good. Dan and I are so proud of how far Elijah has come. As we sat and listened to everyone talk about concerns and areas that need improvement (and ALSO how smart and friendly and likable he is), I remembered where he was at three years ago. He has come so far. Incredibly far!

The nurse who attended the meeting said the most perfect thing. She had read through Elijah's medical records (which we very much appreciate), and she said that people who have valve replacements need a lot of time to function at full capacity after the replacement occurs. For the first few years of his life, he lived with a temporary valve and also with very low oxygen saturation in his blood. As the nurse said, HE IS JUST BEHIND. He started late for good reason and he is just behind. This is what has been on my heart so strongly for the past six months. He had such a late start, so it is understandable that he has so many delays. 

There are literally 26 pages of information about Elijah that we went through today. We are so very grateful to have such amazing and focused care for him. His "team" is seriously awesome, you guys. We are blessed beyond words.

In a nutshell..

Elijah's academics are a non-issue. He is above average in this area. He is finally interacting with his peers at a "normal" level, which is music to our ears. 

Concerns: His fine motor skills are very delayed and they are starting to get in the way of his productivity in class. For example, he needs helps twisting the glue cap open and closed and turning pages in a notebook, so he spends his time asking for help instead of accomplishing tasks. Winter is almost here, and he is unable to snap and button and zip and tie. That means that time will be taken away from other important tasks as he tries to get these things accomplished.

As has always been the case for him, gross motor is a concern, as well. He is unable to keep up with his peers. We were encouraged to hear that although he cannot keep up or physically participate in the way that his peers do, he adapts well! He can't jump while turning in a circle, but he can do his own little circle dance and accomplish it as best he can. He can't sit unassisted for the entire circle time, but he leans and adjusts his weight and body as he needs to. He can't keep up with the kids while they walk to the library, but he does his little half-run that gets the job done.

And the other main concern was Elijah's distractibility and his need to constantly repeat things and have things repeated. Dan and I can relate very well to this concern, as we remind him to do things CONSTANTLY at home. Repetition is a major theme for us. 

So there it is. Elijah is behind, but he is making progress. He has very good reason to be behind. We support and love him and we will do anything in the world to help him continue to catch up and be the happiest person he can be. We feel so incredibly thankful that he has such a caring and competent care team. Honestly, they are the best. Elijah is one lucky little guy. 

And our Sammy. We love him so very much. He is a cute, smart little boy. My most recent prediction about him is that he is going to have a love for music. He can tell me the name of any instrument just by sound and he has this natural, deep little singing voice. He still loves to snuggle, and every night he has to sleep with his blankie ("bebe"), blanket ("banket," which he likes for me to cover his back with when he goes to bed), cow ("Cowwy") and bear ("Baloo"). He often talks to and cares for the stuffed animals in our house, which is the cutest thing.

I love these precious boys!

Thanks for checking in! Have a great weekend!


jencooper said...

Glad to hear good news for Sir Elijah! He will continue to make adaptations that work for him.

Thanks for the pics of such cutie pie boys!

Cecilia said...

Well done, Elijah!!!

Your two little men are so beautiful and adorable!