Friday, February 14, 2014

Note From Angie

Tomorrow we get to see Angie. Judah has been constipated every other day for a while now. Tomorrow would be constipation day. If this happens it will interfere with his session. We had to miss music therapy last weekend due to weather. Music therapy is important for him, his speech & his brain. It basically works a different area of your brain. This part of your brain supposedly helps with speech more so than the speech area of your brain. We have a good music therapist (Angie) - obviously that is key as well. Below is a note she sent recently in response to some concern I was having over his most previous session. I want to share it to lend you all some info & to give you an idea of the connection he has with Angie. There's nothing in this that I disagree with or wouldn't see as helpful advice. I'll add more to this entry later, m.

Hey, Molly.
I'm so sorry for not getting back to you before now. We don't have wifi in our new house yet, so I read your message on my phone and kept meaning to reply the next time I was at the studio. Sorry! I'm wondering how the week has been for Judah?
My thoughts: I see a lot of two steps forward, one step back progress with autism. As Judah learns to communicate better and grasp the expectations others are placing upon him, our guess is that it probably feels really great to be praised for this work. Everyone is happy, he feels proud, gets lots of hugs and praise. The next step is to find out how to keep him challenged and push him just the right amount - we don't want things to be too easy or feel boring and we don't want things to feel so challenging that they seem impossible. In my experience, this differs for every child - their personalities really come into play here. Some of my kids want a lot of 'old stuff' in our sessions...the easy songs that they know really well. Other kids are bored by 'old stuff' as soon as they master it. Judah seems like the type who needs continuous pushing, but that's honestly just my impression from seeing him once a week. In addition, Judah seems to really seek out kinesthetic engagements - he likes to move and touch things and doesn't want to just sit there. He may work best if everyone incorporates movement and touch into all his activities. I have kids who literally practice their ABCs while jumping on a trampoline. Their world isn't right if they're not moving! As a mom, I'd definitely explore and experiment and advocate for Judah when it comes to his sensory and kinesthetic needs. I think that teachers, caretakers, and therapists need to accommodate his needs and be flexible in their approach with him. I hope that makes sense. I have a book, 'The Reason Why I Jump' that I'd be happy to loan you. It isn't Judah's situation to a T, but it might provide some insight and is a quick read. 
That being said, I'd love to start incorporating whichever parent is here into our music therapy sessions more. I'd love for you or Scott to be hands on and prompt him, model for him, squeeze him and provide deep pressure as we attempt to meet his needs. I don't use this approach with very many of my kids, but I think it will really help with Judah. Do you remember the little blonde girl, Tymme, from a group session? Her grandma, Liz, is deeply involved in our sessions and provides the sensory feedback, prompting and modeling that Tymme needs. Liz is always asking about Judah - I think because she saw that he was similar to Tymme in many ways. I'm wondering if you'd be ok with Liz joining us in one of Judah's sessions so that she can show how she supports Tymme during our sessions. It's hard for me to show because I'm usually holding a guitar or an instrument. Please let me know if you're ok with Liz coming in for one of our sessions. If that feels uncomfortable, please just let me know and I'll totally understand. We could also do a small group session if that feels more comfortable, but my recommendation is to have at least one session with just Judah.
Finally, I'm hiring a new insurance professional who is going to look into Judah's case. I'll keep you posted. We're hoping to get things rolling by tomorrow!
See you soon. I hope this helps a little.
Valentine's Day! The kids woke up to a small arrangement of gifts set out on our plastic heart covered tablecloth. Their names were displayed on their gifts & Scott made a small "Happy Valentine's Day" sign for them too. Willow got a wiener dog (she loves dogs!!),  m&m's (she asked for chocolate the entire day today) & a Minnie Mouse phone (she loves it when Minnie asks her to go shopping! haha). Sebastian received a huge Spiderman coloring book, candy (his favorite part) and a movie that he immediately told us he already has at Gramma's. Judah received the Filmore car from Cars (huge interest), a Cookie Monster movie about foods (no interest) and bubbles (little interest likely because we weren't blowing them).

Mommy received a ginormous box of chocolates from Daddy & Sebastian after Daddy realized that the box he had given me this morning didn't have nearly the amount of chocolates in it that one would assume it would. Scott also gave me some gorgeous roses - their petals have dark patterns on them.

Sebastian had an awesome day at school. He came home wearing a beaded red & purple necklace he had made & carrying a big white paper bag covered in hearts. His bag was full of a huge variety of Valentines. People are way more creative with Valentines now a days. Wow! He brought a bag of apples to school this morning (I snuck it into his backpack to see his reaction, haha). His class made fruit sundaes using all red fruit.

Willow & Sebastian begged for chocolate all day. Judah had some interest in looking at the chocolate, opening it up & handing it to someone else saying, "Eat!"

We had a family dinner. Judah flung his baby food across the table, hitting Willow, the blinds, the wall and the wooden case behind the table. Pixie was licking EVERYTHING. Willow was apologizing to Sebastian for being hit with baby food (he wasn't hit, she was). ? It wasn't long before we were taking Judah's food away from him & feeding it to him. Adding chips to his dinner helped some, it's less messy when you crush things on your head instead of flinging colored mush across the room. Sebastian had a very hard time eating his carrots, lots of refusal. Scott ended up putting salt on them. Sebastian loves salt.

Sebastian was a handful today.. I wonder why!! (chocolate) He was incredibly loud & uncooperative, not doing what he was asked to. I don't even know what got taken away from him tomorrow - I think he can't play Skylanders tomorrow (he's been asking to for 2 or 3 days).

Judah seemed sad tonight - no idea why. We are supposed to do ear wax removal drops a couple of
times a day in addition to giving him ear drops (to fight his ear infection) a couple of times a day. He hates it. I hate that he has to do all of this crap.. drink fish oil, get ear drops, wear an eye patch, the constipation horror, etc. It's so much. I can't imagine how sequestered that must make him feel.

Michelle is coming by in the morning to cut Judah's hair. I shampooed it twice last night & was unable to fully remove the "gak" (Elmer's glue & borax concoction) on the top of his head. We'll wash it again in the morning. Hopefully Michelle can even out his hair, so the part Mommy had to chop during preschool isn't noticeable.

Judah got Sebastian's Cars suitcase out tonight. After I opened it for him he hopped in and the other 2 dragged/pushed him around. He is the first one to ever even think to do this. Sebastian was hesitant about having his suitcase out, but once Judah made it fun Sebastian was all for it!

Pixie wouldn't come out of her cage this morning- stayed in there for 2 hours after her usual wake-up time. Do dogs get depressed on Valentine's Day? ;)

Judah is carrying the tall car ramp toy around the house as if it were a small toy. It's about a foot shorter than him & probably 3 feet wide. He takes it from area to area, wherever he wants to play. He brought it into the bathroom today! Yesterday he put it in the kitchen. He plays with it all of the time now! That was a Meemaw & Granddad gift. Perfect gift for him, he loves it!! Caillou is also a current interest - no idea why.

I've been having headache issues all day today - still having them.

Judah supplements - Today he took all of the usual plus one dose of Miralax. The usual being fish oil, 2 doses of folinic acid, a probiotic, vitamin D 2000 and 7.5 mL L-carnatine. He started ear drops yesterday, Oflaxin OTC 0.3%. Today he started Debrox (earwax removal). He was diagnosed with ear infection the day before yesterday (Wednesday), but doesn't seem to be having pain. Doctor couldn't see a tube in that ear (or maybe it was both). We are being referred to ENT. We had not done anything about his leaky ear because we had called the doctor's office & were told by a nurse that it would basically heal on it's own & not to come in unless we saw blood.

Judah refused milk most of the evening until bedtime (not like him) & refused a home made smoothie (he's done that before & drank it the next day). He seemed sad this evening. No bowel movement today - many accidents while wearing underwear. Was very excited to get out of the house with Daddy on his lunch break.

No comments:

Post a Comment