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Tuesday, October 9, 2012

Sleep Meds/ Shriners/ Resources/ Preschool

Carter has not been sleeping very well lately or rather, for months now.  He has been waking up at 5 a.m. and now sometimes wakes up between 3-4 a.m.  Ridiculous!  I finally got his doctor to put him on Trazadone to see if that would help him sleep.  We are still seeing if it works- we may have to try a few things.  Melatonin has not worked in the past, in fact it caused sleep terrors I think.  As much as I hate adding another medicine, I need my sleep to be a good Mom.

He went to Shriners today for his annual orthopedics appointment and his xray looked great.  The doctor was pleased to hear he is close to crawling and is getting on all fours.  Way to go!

I have posted on this blog quite a few resources I have found but I kept thinking it wasn't relevant to those outside of Utah.  I wanted to be able to share my information with others it could help.  Since there aren't many in Utah with 1p36 I decided to share my list with a friend in the ward that has a severely disabled child.  She had no idea about most of the resources and was excited at some of the things I shared with her.  I felt so good that I could help someone out!  Then she had the GREAT idea of typing up my list and giving it to her son's therapist.  Now that therapist is passing it around to all the families she serves.  I know it's not a lot, but it is something.  I was glad to hear my hours of research could help benefit other families.  It's hard enough having a special needs kid, so every little bit of information helps.

Lastly, we had Carter's preschool meeting last week with 5 women to get the information about preschool for Carter.  His testing is this month and IEP (individualized education plan) next month.  We are also going to take tours of the schools to see which we like best.  So we have two options, because Carter sees physical and vision therapy.  He can go to the elementary close by us by bus, 1-4 times a week for 2 hours.  It would be from 9-11:15 and would be a class of 10 or so with 1 teacher and 2 assistants.  The class would have a mix of peers so kids like him and kids more progressed than him.  He would be able to feel included but also watch and learn from the kids that can do more than him.  They would include him at everything- so if they were on the floor he would be too.  Our second option would be DSPD which is the school of the deaf and blind.  It sounds pretty intense but it serves kids with all visual delays not just blind.  That school is a little further away and has transportation by a van.  It would be 4 days a week all day, with smaller classes and a teacher and nurse.  The nurse would help with feeds etc.  He would have the opportunity to nap if he needed to. 

My first instinct was the all day school because Carter gets really bored at home with just me and baby sister and seems to crave more stimulation.  Plus at the DSPD he would get more OT, probably time in his stander and more services.  The only thing I'm worried about there is that it's so long and he won't have a variety of peers.  At Columbia I wish it was a little longer and I wonder if he would get enough attention in a bigger classroom.  I do like the mix of peers though so Carter can watch a variety of people.  Carter loves going in the car, is good in his wheelchair so I felt like he would do good either way.  I think once we take a tour I'll have a better idea of what is best.  I would appreciate any input from other families making a similar decision.  The ladies from the schools were almost fighting for Carter because he is so cute.  It made me feel good.  They really liked him and his sweet smile and personality.  They asked if I had any concerns and I said none.  They said that means we are both ready for this and I think we are.  I do want Carter to have time with his baby sister but I also think getting out more will be good for him as well.


  1. Hi Heather, wonderful to hear how hes coming on and love the cute photo. Is there any chance he could combine the 2 school placements? My Uisneach 3 years old attends a special pre-school 3 mornings a week where he also gets input from physio, OT and speech and language therapy and his classmates all have a comparable intellectual disability to his own (most actually have Down Syndrome) and two afternoons a week he goes to the early start pre-school in our local mainstream school. In this class there are 12 children but just himself and one other boy have any disabilities so its a wonderful opportunity for him to mix with typical children and I think its important for him to have lots of good models for speech especially. I feel the mix gives him the best of both worlds. I was terrified when he started in the mainstream school because of the bigger class size but its worked out really well, the teachers were very eager to learn about special needs and even began an evening course in sign language to help them communicate with him. It's an important decision but you will make the right one for Carter and it will open up a whole new world of stimulation for him. Miriam

  2. Great idea! I didn't even think about combining the preschools. I know with an IEP I can tailor it more to what I want. I hope. I do think he models other children so being in a mixed class would help as well as the more therapy and smaller class.

  3. NeVaeh did a combination of 3 days at the specialty school and one at the public preschool when she was 3. It helped her as she got opportunity to be with regular functioning peers. They however discovered she needed a one on one or would be out the door down the street or laying on the floor tantruming without one. They needed to have the ability to leave the classroom and do sensory activities with her at any given time at that age her attention span was only a minute or so for certain things. Her behaviors are good right now at age 8 but part is because she has the same teacher and 1on1 for the past 4 years so they know her like the back of their hands. Shes in a self contained class room. Spends a little time in the classroom and with specials. Now in second grade. Full time in the public school.
    Her behaviors were the worst in kindergarden till they got a constant 1on1 and got her on a strict pec schedule and her tonsles and adnoids came out so she started sleeping.

  4. I was very grateful for the help! So glad you said something.