Friday, February 15, 2013

Appointment Updates

We had a good meeting.  I got a bunch of paperwork to give to the school for their upcoming IEP in the spring that basically says NO to ADHD, but rather they have:
Apraxia of Speech
Language Impairment
Phonologicial processes Disorder/Developmental articulation disorder 
(yes, I just typed that reading it off the paperwork next to me!)

The reports state the boys do not meet the criteria for a clinical/medical diagnosis of ADHD. It says the teachers need to work differently with the boys until they work through their disorders. The psych and speech lady gave specific examples of how to help the boys in class for the teachers to read.

I found the boy's IQ scores to be interesting. The average score is 90-109.
Both boys fell into the average range, which is FABULOUS. I guess I assumed Jax would score higher than Brady given his communication, but the doctor said that communication has nothing to do with IQ. Jax scored 98 (smack dab in the middle of average) and Brady scored 104. The doc said that it's like when we travel to a foreign country... we may not be able to speak the language and communicate, but it doesn't make us any less smart or suddenly make us stupid (I was surprised to hear the doc use that word in that kind of facility, but whatever) - so that example made tons of sense.
So I said, GREAT they can be doctors if they want to be! And the doc said, "I don't know why they'd want to do that, but yes, they can". Ummmm you are a peach Mr! He finally laughed and said that they had way too much personality to be doctors. Mkay.
So their cognition is perfectly fine and that's what every parent can ever really hope for. They may not be able to speak, but they have their minds and can communicate other ways as they grow (like Brady and his assisted device).

The psych was telling us stories of the tests she gave the boys and how they did certain things that were major flags of not having ADHD. She said that they brought in their Mario/Luigi characters. She told them that they had to sit on the table and to not be touched even though she knew the child wanted to play with them. They each put them up there, and while they looked at them off and on, they never touched them even when the testing got boring. I have no idea what that means or why it's a test, but she gave that example.
She said they give tests that others would view as a child being 'naughty' or 'defiant', when they look at it clinically to see if it's a disorder.  I guess that all makes sense.

The boys both scored low-average for fine motor coordination and obviously all communication aspects. Which, is not shocking to us at all! The meeting was positive and light, and they said the boys will be able to work through all the hurdles with continuous practice and help, but they will need to be evaluated and watched for other problems arising. 

We are so lucky that they are mild mannered, social and friendly because that takes a lot of the issues out of working through a lot of this. Many kids with these communication disorders have Autism, and it's much harder to work through the issues if the child doesn't WANT to socialize or talk to other people, so it's a hurdle on top of a hurdle, so it could always be harder. 

The doc explained that Apraxia is NOT from the boys being premature. He said that growth issues and Jax's lung disease are, but the Apraxia isn't. Interesting. He thinks Jax's feeding issues are obviously from his tube-dependency and GI complications, but his continued struggles to learn eating are Apraxia. They joked that he has better speech, but extreme feeding issues - which is totally unseen in the medical world when the ID twin has no feeding issues and the more affected speech. They brought that up before, so apparently that really boggles their minds. Ohhh to be a doctor and think about this stuff all day.

Anyway, we have our diagnosis' for the boy's IEPs and I was given phone numbers to call the hospital for an OT to talk about Dyspraxia and also summer speech programs. They all agreed that Apraxia of Speech can easily affect other bodily functioning, but we'll see what doctors in that specific field think. 

I like positive meetings where problems are identified, but they're not seen as lifetime limitations. The speech therapist said she'd pay a million dollars to see the boys at 16 yrs old and hear the stories of what they do together, and the trouble they make with their charm. Um, hilarious, and no, my babies will never age past 5 yrs old!

The boys both saw the pediatrician today and that went well too. Brady is definitely on the mend and will probably have a cough now for the next week or so. Jax seems to have picked up his bug for sure, but his lungs sounded CLEAR, which tells us his bug is like Brady's and more where Croup can come into play and not really his asthma which is in the lungs. So the doctor prescribed some steroids to have on hand at home, but so far he hasn't needed them.
We realized after talking that Jax most likely has been having tummy-troubles because he's constipated. The doc thinks all the extra food/protein is backing him up. His poo has been looking like rabbit pellets, so we're giving him Miralax in his formula for the next 2-3 weeks. 
He's rather pukey right now because of this bug though, so we're getting creative on how to get his food into him.
We're hoping Jax doesn't get as bad as Brady with this illness, cross your fingers for us tonight! 

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