It finally happened...

Gross and fine motor skills are not Noah's strong point. He's always been delayed, and it seems that the older he gets the more delayed he becomes. Yesterday Noah's cousin came for a visit and it was apparent that in many ways he is as advanced, if not more so than Noah. He was better able to tackle playground equipment, better able to manipulate toys, had better posture, and while Noah clearly has a larger vocabulary, a greater variety of sentence types, and just more to say in general some of Simon's sentence structures ("Simon wants the ball") were eerily similar to Noah's. I knew this day would come, and it's not as traumatizing as I thought it might be. It's still a little sad, though. At least Noah's still a little bit bigger than his almost 3 years younger cousin. That's going to be a hard day, I think.

Scars

Today Noah noticed one of his scars and asked about it.
Most of Noah's scars don't bother me. The little white spots on his hands, feet, ankles and arms are a reminder of how hard he fought and how much he made it through. But then there's the red scar on his one cheek not really noticeable to anyone but me from when he coded the first time and in their rush to extubate they ripped all the skin off his cheek. I don't like that one. The scar he asked about today is large and I remember the look of pain on his face when I came in for a visit to find that his IV had given out and medication was burning a hole in his arm without the nurse noticing. I still feel sick to my stomach when I think about it.
Noah will hopefully ignore his scars the way I ignore my birth marks. I forget they're there until someone asks about them. Maybe as a little boy he'll be proud to have more scars than all his friends? Who knows. Thankfully he doesn't have to carry the memories of how he got them. He doesn't remember the painful experiences, even if he's still daily affected by them.

Testing

The IEP is done, and so is all the testing that goes with it. I'm sometimes not sure how much I believe test results. None of the tests are standardized for deaf-blind kiddos anyway. But I think things are fairly accurate this time around. I have been told that the age equivelant scores aren't the best ones to look at, but I'll take what I can get for now. Here's the deal...


Sensory Profile:
Noah scored "more difficulty than others - probable difference" in the visual and behavior sections and "much more difficulty than others - definite difference in the auditory, movement, and touch sections. He had a definite difference with registration and seeking and a probable difference with sensitivity and avoiding. If you don't know what any of that means, be thankful. Sensory issues are not fun.


Sensory processing measure:
Noah didn't score typical in any area. He scored "some problems" for social participation and "definite dysfunction" for vision, hearing, touch, body awareness, balance and motion, and planning and ideas.


I think there is no doubt based on these results that Noah still has pretty significant sensory issues, but surprisingly this is actually a huge improvement from where he was a year or two ago. His OT made tons of sensory recommendations (in addition to the huge AT workup she did a few months back). She definitely is a keeper as a therapist and it stinks that we'll lose her when we go to the new school district.


CASSLS test (simple sentence):
36-42 months for language structure and use
30-36 months for use of questions
24-30 months for conversational skills
4.5-5 year old for listening skills (using the complex sentence test)


Meaningful Auditory Integration Scale:
40 out of 40


TACL-3
4 years 3 months vocabulary
5 years 3 months grammatical morphemes
3 years 9 months elaborated phrases and sentences


Bracken Basic Concepts Scale
4 years 8 months school readiness scale
3 years 3 months direction/position
3 years 9 months self/social awareness
3 years 4 months texture/material
less than 3 years quantity
3 years 7 months time/sequence


TOLD-P
less than 4 years picture vocabulary
5 years relational vocabulary
6 years oral vocabulary
4 years 6 months syntactic understanding
5 years 3 months sentence imitation
less than 4 years morphological completion
could not test* word discrimination
7+ years phonemic analysis
less than 4 years word articulation

* This test involved Noah stating whether words were the same or different. While he was able to accurately repeat each word pair (indicating that he heard the differences) he doesn't yet get the concept of "same" and "different" so he wasn't able to answer the questions accurately.

Notes from Noah's therapist: Noah is an excellent user of his cochlear implants [yay!] and auditory skills are his strength. Noah demonstrates the unusual pattern of a significantly stronger expressive vocabulary than receptive vocabulary. Vocabulary items related to descriptors are particularly challenging, and this is largely attributed to Noah's limited vision.

Conversation

It's so much fun now that Noah is starting to learn how to have conversations, but little boys talk about the weirdest things.

Noah (as we pull into a parking lot): Where are we?

Mom: We're at Lowe's.

Noah: I like to ride in the race car at Lowe's, but no puking!

Mom: I like the race car shopping carts too.

Noah: Do you know what puke means?

Mom: What?

Noah: It means to throw up all your food on your clothes and have to put your pajamas on.

Mom: Do you need to throw up?

Noah: No thank you. I want to ride in the race car!

a busy week

This is what our week looks like next week:

Monday: AV therapy
Tuesday: Closing on our new house! :-)
Wednesday: Field trip to the strawberry patch
Thursday: Company arrives for the weekend and annual IEP
Saturday: Painting party and then birthday party
Sunday: Noah turns 5!

We were thinking of moving on Memorial Day, but we pushed it off to the weekend for the sake of our sanity.

Happy Mother's Day!

Being a mother is not easy.

I visited my baby in the NICU for the first 186 days of his life (3 hours away for most of that time), and then had to give him back to the PICU 3 days after he came home.

I watched my baby code twice and made the decision of whether he should live or die many more times than that.

I sat in a waiting room hoping for a good outcome for 4 different surgeries. Would he live? Would he see? Would he hear?

I have (often laboriously) fed my child for the past 4.5 years, many times only to see that hard fought meal come right back up again.

I have driven thousands of miles taking my child to therapies that he needed that couldn't be had locally and then spent many many hours working on therapy homework and making it seem like play.

I have gone to numerous conferences, some far away, to learn more about how to better parent the mystery that is a verbal deaf blind child.

I have done everything for my child, but sometimes I forget about me.

Take today and do something just for you!

Happy Mother's Day!

moving update

We have a contract... the school has been notified... my house is full of boxes... I feel like I'm losing my mind. I guess that means it's official!

The SPED director and principal have both said Noah can finish out the school year even though we'll probably move a week or two earlier. I've e-mailed the new county's SPED director, but haven't gotten a response yet. I'm hoping that she doesn't blow me off since Noah's not starting 'til August, because it takes a lot of work to get ready for Noah's arrival.

In other news, our AV therapist is doing lots of testing on Noah. I don't have an official report yet, but the results have been interesting to me. On the TOLD P-4 Noah's subsection age equivelant scores ranged from <4 to 7+. He's got really strong strengths, but some major weaknesses too. On another test that he's doing now, he got a school readiness age equivelant of 4 years 7 months. That's only a few months behind his current age, and if we were still correcting his age for prematurity would be right on the mark. What's interesting is that when you look at the subtests he scored very high on the letters, colors, shapes, and numbers, but only got 4 questions correct on the size comparison section. That's pretty much how it is... What he's good at, he's really good at, but his deficits are pretty significant. Hopefully the JTC will know what to do with him, because no one else seems to!