Hi Mary Grace

I can't really share Luca's feelings with you because I don't know what she's feeling.

But the best you can do is exactly what you are doing. Arm the teaching staff at the school with as much info as possible (without confusing them) and an action plan for if Kathleen gets upset; then let Kathleen go. It's very hard sometimes as a parent to let our kids go. But once you've done all you can do, have some faith in Kathleen and what you've taught her, she might surprise you.

Sorry I can't be of more help.
Mark

Hi there,

We are very new to Moyamoya so I can't comment on the school program yet as this just happened to our family on the 17th of April with our 8 yr old daughter.
However ..7 days after Mike's stroke they had sent in thearpist to start working with her. Although she was on bed rest, wasn't eating solids yet, and was still going up and down in recovery. For example on Monday we had a right arm ..Thursday it was gone. I said. No more.Enough. Right now we have no idea where Mikeala is at with regards to what she can and can't do. Please no more thearpist coming in here till we have a stable child with a base line to go from. The following week when they came in I just made the rules clear. Mikeala needs rest..she will nap from 1-3pm. She will have an hour break inbetween physip and speech therpay.
Who else is going to advocate for your child if YOU DONT. The doctors and nurses have all taught me the past few weeks that my husband and I know our child best. We've given Mikeala a board to communicate when she has a headache, when she's tired, when she feels sick to her stomach. Now she's talking more this week ..but next week we may need it. I think as a Mom ..no matter what the situtation or illness I would be going to the school ..having a meeting with everyone that would be involved with my child and saying ..this is it. Draw the line. This is what I want you to do and this is when I want you to stop..and let them know the drastic consuqences of what can happen with stress and not stopping when they see the signs.
I don't think it'll take long or much encouragement and they'll pick up on them as I already do with Mike. A sigh, a swipe of her brow, a flushed face, a yawn, a a distant " I wish this would end look".

As I said ..were new to MoyaMoya ..but I hope from a Mothers perspective I've added some useful advise.

Take Care and good luck to you and your daughter ..
I bet she'll DO GREAT!
The Baird Family

Carmel, We must ahve posted at the same time.I jsut read your respons and it's great so know that your quickly becoming your daughter advocate.I learned quite early in Kathleens life that I needed to do this for kathleen since she was born with down syndrome. No one will advocate like a mom will.this doesn't mean they will always listen right away,some professionals tend to think that moms are overeacting or overprotective. So I try to make sure they truely understand her and have a plan.My worst fear is that they will interpret her reacions as a behavior issue as apposed to a health issue.This has happened in the past.this is why I look for fact from others, there isn't anything written about these things it all comes from experinece and sharing our stories.Sounds like your taking control and becoming your daguhters team leader.We ahve team meeting every month with staff that works with Kathleen and this is invaluable.I had to have it written in her IEP because it's not something they do automaticall even though it makes so much sense for everyone to get together and share what's going on.Thanks for responding and your daughter is very lucky to have you by her side. I'm glad you found this group.
Mary Grace

Carmel, just a note that might put your one fear at ease. I have found that at all the hospitals Luca's been in (South Africa and UK) the ICU staff are THE BEST. If I could have had Luca stay in Paed ICU with the ICU staff, I would have been very happy.

Mark (Luca's Dad)

Mary Grace,
     Robert too will be making the transistion to middle school and Julie and I have many the same fears that you have, and some additional ones as we live on a Island the middle school is on the main land which means a ferry ride and a mile of water seperating us from our son.

We are fortunate that Robert was in a split 5th/6th Grade class, His Teacher  of (2 years)saw what happened when Robert became fustrated,stressed rush, ETC. With the experts saying that everything needed to be as stress free as possible  his teacher came up with a good idea, Robert did e very other problem, and then if time was there he went back and started the the once he originaly skipped , to be clear Robert is very intelligent, and was maintaining good grades to begin with and the teacher just needed to be able to Evaluate him,

Also Robert gets a seperate classroom and no time limit on Standardized testing (MEAP/ACT) this is all set with the schoo district and State.

We do not come from a large School District and I dont know if this would work for you but his Teacher plans to have a sitdown with us  and Roberts new Teachers next school year to help ease the Transisition