Today we had classes about educational law and IEPs. We're parents to one of the oldest kids at JTC this session so we've attended more than our fair share of IEP meetings. IEPs can be really stressful, but they don't make me nervous the way they used to. Through the years I've met some great contacts and found some great resources to help and I've also found the courage to ask (nicely) for what I think Noah needs to get a FAPE. School districts can't read your mind, so if you don't ask then it's not going to happen. Here are a few of my favorite online resources:
Wrightslaw: This website is really great at explaining the federal laws and can be helpful when you want something that you KNOW your child needs but the school hasn't done before. Finding just the right bit of law that supports your request can mean the difference between an easy conversation and a long fight.
Virginia DOE: This website has a listing of all the SOLs by grade and subject which can be a big help in trying to come up with IEP goals. Under the special ed. section there are also guidelines for working with kids with various disabilities, which in my experience the school districts are not particularly familiar with. I imagine that other states also have similar websites.
I'm determined: I'm a big fan of this VA DOE initiative that teaches self-determination skills and gets kids involved in the IEP process at a young age.
Hands and Voices: This website is a great resource for families of deaf/hoh kids no matter what communication modality they choose. There are lots of great articles about everything from eligibility to mainstreaming and the "pop up IEP" can be really helpful if you're not getting the answers you want from your school district.
Speaking of Speech: For some reason I always struggle the most with coming up with speech goals for Noah. The IEP goal bank on this website isn't particularly navigable, but it is fairly exhaustive - just what I need.
DB Link: Anything and everything you need to know about deaf-blindness can either be found of this site or using the links contained on it. It's great for educating IEP team members who just don't grasp the implications of a dual sensory impairment.
Wednesday, July 28, 2010
Monday, July 26, 2010
Take Me Out to the Ballgame (and other language opportunities)
Besides all of the wonderful care Noah is getting from his teacher and SLT, just being in a new place has done amazing things for Noah's vocabulary. Walking from the apartments to school each day Noah sees palm trees, an emergency phone, a security keypad, scaffolding, and a homeless man. Each new experience is an opportunity to learn more language.
After the first week at JTC we headed to Disneyland for a day of rides and meeting some of Noah's favorite characters. There wasn't a whole lot of new vocabulary to learn (since he already knows everything there is to know about all the Disney movies) but he really enjoyed conversing about some of his favorite topics with many of the cast members there.
Thanks to a very generous John Tracy donor, Noah learned a ton of new language at his first baseball game. He is now quite the Dodgers fan and has been singing "Take Me Out to the Ballgame" and "We Will Rock You" quite regularly. It was hard for Noah to see the action of the game, but that just made him more eager to learn new language so that we could describe things for him.
We spent much of this past weekend at two of the museums in Exposition Park. At the Natural History Museum Noah learned all about camouflage and mimicry during an "animal talk" and had lots of practice with his listening skills as I described the upcoming animal for him to guess in the galleries. He was really good at guessing most of the standard animals but needed pretty detailed hints before he was able to guess others (apparently Noah best knows opossums for lying dead on the side of the road).
The best part of the California Science Center for Noah was definitely the dress up rooms. He used some of his emerging conversational skills while playing "TV studio" "rocket" and "forest" with other kids. Noah also learned lots of new vocabulary thanks to the "Ecosystems" exhibit. There were so many hands on things to see and do and he loved every minute of it.
We're now into our final week at the JTC and I'm wishing we could stay longer. I can't imagine where Noah would be now if he had spent the last 3 years at a school like this one, and I know that I will be a better parent and advocate because of the things I've learned. I'm forever grateful to Mrs. Tracy for her vision and for all of the donors who keep the programs running.
After the first week at JTC we headed to Disneyland for a day of rides and meeting some of Noah's favorite characters. There wasn't a whole lot of new vocabulary to learn (since he already knows everything there is to know about all the Disney movies) but he really enjoyed conversing about some of his favorite topics with many of the cast members there.
Thanks to a very generous John Tracy donor, Noah learned a ton of new language at his first baseball game. He is now quite the Dodgers fan and has been singing "Take Me Out to the Ballgame" and "We Will Rock You" quite regularly. It was hard for Noah to see the action of the game, but that just made him more eager to learn new language so that we could describe things for him.
We spent much of this past weekend at two of the museums in Exposition Park. At the Natural History Museum Noah learned all about camouflage and mimicry during an "animal talk" and had lots of practice with his listening skills as I described the upcoming animal for him to guess in the galleries. He was really good at guessing most of the standard animals but needed pretty detailed hints before he was able to guess others (apparently Noah best knows opossums for lying dead on the side of the road).
The best part of the California Science Center for Noah was definitely the dress up rooms. He used some of his emerging conversational skills while playing "TV studio" "rocket" and "forest" with other kids. Noah also learned lots of new vocabulary thanks to the "Ecosystems" exhibit. There were so many hands on things to see and do and he loved every minute of it.
We're now into our final week at the JTC and I'm wishing we could stay longer. I can't imagine where Noah would be now if he had spent the last 3 years at a school like this one, and I know that I will be a better parent and advocate because of the things I've learned. I'm forever grateful to Mrs. Tracy for her vision and for all of the donors who keep the programs running.
Wednesday, July 14, 2010
John Tracy Clinic
We have completed two days at the JTC summer program so far, and it is so worth all the hassle and the stress involved in preparing to travel cross-country while moving. I highly recommend it to anyone thinking about going, but start saving now. The program is free, but 3 weeks of travel can get pricey.
Noah is quite enjoying his class and keeps tabs on where everyone is at all times. You can't go see the SLT or audiologist without Noah informing the teacher that you're missing. He loves his new classmates but I'm wishing they all lived closer. We might have to plan future trips to Denver, Dublin, and London after we're done here.
My first happy mommy tears came yesterday when the teacher told me about Noah and another student playing on the playground talking back and forth on Monday. That pragmatic language is always a struggle for Noah, and hearing about a successful peer conversation on day #1 was amazing.
So far the parent classes are fairly basic in terms of what I know, but I think Brian is probably learning a lot. I'm looking forward to some of the later topics, and right now am totally enjoying hearing other family's experiences and learning from them. Day #3, here we come!
Friday, July 2, 2010
No teefs!
Yesterday started as an ordinary day. Noah woke up way too early, got his reflux meds, his ears, and a fresh pull up and headed downstairs to stare at the blank TV screen, willing it to play cartoons. As is also typical at some point in the morning he fell down. He doesn't have the greatest balance or much peripheral vision and he enjoys spinning in circles, so falls are fairly common. They're more frequent later in the day when his muscles get tired and his gait gets wonky, but they do still happen in the morning. He's rarely upset when he falls, and it's not at all uncommon for a new bruise or scrape to show up with little fanfare.
I remember him falling. He was a bit startled and headed to daddy for a hug before going over to read a book. About 10 minutes later as I was helping Noah to get dresses I pulled his hand out of his mouth and noticed that his fingers were bloody. Further inspection showed bleeding and bruised gums, one tooth that was very loose, and another that was loose and not in it's normal position. After talking to the dentist it was agreed that he did need to be seen but that it could wait until after VBS (which Noah didn't want to miss).
The dental appointment was traumatizing as ever, but Noah was very brave. He cried uncontrollably the entire time but stayed as still as possible and tearfully agreed to cooperate. An x-ray showed that Noah's roots were barely there, probably indicating that this fall was the final straw in a long line of fall related tooth trauma, so out came the teeth. Noah now has lots of presents and a little yellow treasure chest with his two teeth in it. We weren't quite ready for introducing the tooth fairy, but it's just as well because I think it would break his heart to have to give up his treasure. Hopefully next time Noah can lose his teeth in a more natural manner.
Sunday, June 27, 2010
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.
Tuesday, June 15, 2010
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.
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.
Tuesday, June 1, 2010
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
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.
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