Head Buzz - Aug 2016

Of course with the start of school comes many considerations. What's currently keeping me up at night...

Schedule. How do we switch to not be overwhelming with school and focus on his current top needs... which are socialization, communication and behavior challenges. He's wiped after the day at school and his schedule is so crazy I'm not sure we are putting his energy resources into the appropriate places. We need more Social Skills, integrating heavy social communication skills. Also, his hitting and powering through behaviors are escalating, which means we need more BI support during the week so we can actually go about our life and learn how to help him navigate it all. To actually go out and do something, like shopping for school items or something like that often it's a major scene. And to be honest, just too much to handle between Lila's whining and Ian's behaviors. And Lila is not wanting do go many places with him because of it. Which can not happen... makes me so sad. So, I need to focus on more behavior support during the regular week.

And social skills has to be a priority. Would love to do a Social Skills class with kids from WISH. I'm going to work on how to get that going. Need just the right facilitator/therapist. There's a fab woman who does classes in SM but I'd rather work on skills down this way, unless i can't make it happen.

Do we drop some PT&OT? I put a temp hold on our Tuesday sessions but they won't hold it for long. He's just so tired and having both Monday and Tues aftrnoons with both PT & OT is tough. But we've worked so hard to get these amazing therapists and they are so good with him.... what to do?

And AAC... have been working on including a new therapist, Rachel Maddel, into his team. She's really hard to get time with but she's amazing! She comes to the house and will work with him in the community as well. So we can really have social communication support when we are in the real world.

Regarding that, I'm also confused about if I"m using the right program for his AAC needs. Have been trying to program some social scripts for school but it just seems wrong to try to predict what he'd like to say. My friend Tina uses the PODD for her son and it seems more intuitive. And another SLP friend mentioned AACorn, which I'm also looking into. Tina and I are having an AAC date this week to go over what we use and how it works for both of us. I know there's something better, just need to find it.

Also, customizing voices is something I've thought about for a while. Saw another story on a sister doing this for her little sister. He can speak so we could use his voice maybe. I'd love to have his voice as the output for his device. I think he'd love it to. Would be so much more natural. Have emailed the company who does this. Not sure how much it will cost or if it could work but will check it out.

They have him typing on a label maker to fill out his school work. Which is awesome because he knows how to type. It's been so cool to see what he says! I just wish I could be a fly on the wall and see how much prompting they do. Supposedly, they are trying not to do too much so it's all him. Can't wait til I can work in the class and see it first hand. I'm going to try next week but not sure if it'll be too distruptive for him.

Dentist needs, we have to get back out to see Dr. Sami. She's so expensive and it's always such a chore to get out there, wait forever to see her, and then have him freak out about whatever they are trying to do. But he needs it and she's amazing. So we will try again.

His testicles still have not yet descended. And I've heard from more than one doc to get the surgery done as soon as possible. The urologist had said we could wait until he's stable medically. Guess that would be now. Knock wood. So I made an appointment.

Shoes and feet, still doesn't have much of an arch but at least there's a slight one developing. Should I get orthotics or not. Dr. Kay doesn't seem too concerned but with our family history of foot/ankle problems I'm very nervous.

Liver ultrasound... need to make an appointment to make sure no tumors are developing. Just a precaution because more risk with Mcm.

Supplements, still on the current plan with Dr. K and Dr. H. Havne't been super consistent. Need to be.

Medical Cannibus, still really beleive this will help him. Although haven't found the right person to dose and support me on this. Both Dr K&H aren't certain it will but my gut is telling me otherwise. Did a trial for a while but not sure the right strain or dose. Want to try again.

Piano... his prior one on one and teacher, Peter, teaches piano and i've always thought to do this with him. My friend just posted how great it's going for her kids. Thought I'd try so starting next week.

Swim... he's finally kicking on command sometimes. It's such a slow process. Would love to have more time in the pool. Just not enough time int eh weeks.

Service dog... our precious Bella had to be put to sleep. Still having horrible visions of it all. Can't beleive it did it even though I know it was the right thing to do. A friend who has a child wih CP at WISH brought her service dog with her to school yesterday. Got me thinking. Ian's tendancy to run out the door and into the street, etc, is not getting cognitively better. We can restrict him with gates, doors, locks but he eventually figures it all out. Also his stealing food is the same issue. Maybe the key is a service dog to help support him? Or is that too much. Not sure how it all works but checking it out.

Working on getting him to realize to eat safely. Again, the locks and gates on the kitchen and fridge can only work for so long. He really should be able to go in the fridge/cupboard and get what he wants. But it's always too much of the wrong thing. Like a whole bunch of bananas, Or a box of cereal, loaf of bread, etc. Really need to work on the behavior of it rather than restriction. We have been but I think we need to step it up as he gets older/bigger.

Potty training... what the heck?! I'm not sure what to do here. We gave it a solid super consistent try and still nothing. He can walk around with a full diaper with 1 & 2 and not say a word. Really need help here. Need to seek from other sources.

Ripping plants up. Not sure where this began but now he will grab and rip plants up regularly. I use "gentle" "makes the plant sad" "plant needs leaves/flowers to live" but he still does more ripping than gentle. Where did this come from. Hope it's a phase!

To close... love, love, love this amazing boy. Don't mean to complain. Just what I'm working on to further his development, etc. Like to keep note of it. Need to start making this a regular thing.