Comments for Emilie's Blog

Comment on Happy Birthday Maddie! by Teresa

Teresa — Fri, 13 Nov 2009 05:19:33 +0000

Happy Birthday Maddie…from The Eberharts in Colorado and Emma’s grandparents in South Dakota..they were checking you out on the AS calender. Hope things are going better for Maddie. Will so miss your input on the listserve but am definatley keeping your email close by!

Comment on Medication Update by Nana Donna

Nana Donna — Thu, 12 Nov 2009 15:26:05 +0000

Emilie,

Talk to the doctor about using Clonidine for Maddie. It is such a mild drug that clearly works for Miss Emma and so many other angels. Originally she used it to assist with relaxing enough to fall asleep but now the neuro has her taking a 1/4 tab. for school. It is safe yet so effective. I saw where Chance Evans is using it now and he is seeing wonderful success with his behaviors. So it is worth trying. Email me if you have any questions and I will answer them for you. Maddie so deserves a break….and I honestly beleive this may just solve her issues as she enters puberty. Hormones are an ugly awakening for even typical children. Hugs to all…xoxoxo

Comment on Happy Birthday Maddie! by Nana Donna

Nana Donna — Thu, 12 Nov 2009 15:17:25 +0000

Maddie,
I could not pass up the opportunity to wish you the happiest of birthday’s. I am so proud of you and all that you have accomplished. 12 yrs old and still reaching for the stars is something to be proud of. You gave and continue to give us hope for Miss Emma each and everyday. Without you and your momma sharing your life, we would never have imagined and pushed for Miss Emma to accomplish all that she has. Thank you from the bottom of my heart & soul for being there now and in the future years to come. We will always follow your lead girlfriend, always. xoxoxox

Comment on Medication Update by emma

emma — Wed, 04 Nov 2009 14:22:31 +0000

Interesting about the flax seed oil and B supplements, who suggested them? Our neurologist has said something about omega 3/6 supplements for behaviour after I had told her we weren’t happy with risperdol – I think flax seed oil has omega “something”?

Risperdol is the only drug prescribed to children for behaviour problems here in Greece, although I’ve heard of concerta from other parents. Hope things go well.

Comment on About by Paula Evans

Paula Evans — Wed, 04 Nov 2009 02:55:22 +0000

Hi Emilie,

My name is Paula, my daughter Ainsley is 5 del+. We’ve met at the St. Louis conference and I’ve emailed with you in the past. I would like to speak with you about something if you have the time. Could I contact you or vice-versa?

Comment on who’s really autistic? by Brandie

Brandie — Sun, 01 Nov 2009 03:26:07 +0000

After working in a classroom for children with disabilities, I can more assuredly say that autism is wayyy overdiagnosed. It’s sad.

Comment on To medicate or not to medicate, that is the question! by Heather

Heather — Sat, 31 Oct 2009 20:04:40 +0000

Hey Em

It’s a hard decision. I tried to take Chance off meds because the side-effects were so terrible, but without them, his behavior is sooooo bad. I’ve contacted Darren Humphries and he’s got a contact with ASSERT in the UK that produced a 28-page booklet and DVD on dealing with difficult behaviors in Angelman. I’m waiting to see if I can get my hands on a copy. Have you seen it?

Comment on To medicate or not to medicate, that is the question! by Jennifer

Jennifer — Sun, 11 Oct 2009 02:42:18 +0000

I feel your pain (((((HUGS))))). It’s a tough decision. We are going through this decision with our boys right now. They have Fetal Alcohol Spectrum Disorder (FASD) and drug exposure, and it’s at the point where, we can handle it, but would it be better for them to have better control of their actions and have better brain clarity??? They get in trouble constantly and I also, like you, want to be the nice Mom, not the B*@*h that’s yelling at them all the time, because that’s how I feel quite often. It also affects the other kids because it affects my mood, and they have to listen to it too. Would they like to remember what is said to them, yes. Would they like to think before they act, yes. Would they like to get a sentence out in less than a minute, yes. And like someone else told me, if they had diabetes, would I be against medicating them? Because it’s almost as serious of an issue. They said that I’d notice within days if it works and if it doesn’t we can change it or whatever.
I’m sure someday we’ll be at the same point with Peyton that you are with Maddie. Peyton likes to get into everything, pull hair, scream, etc. and we all think it’s so cute. Someday, when she’s Maddie’s age, it won’t be so cute anymore.
Anyways, you have my support in whatever decision you make. It’s a tough one, like many decisions we special needs parents have to make. These little people are counting on us and we don’t want to screw up. And these days you don’t know who you can trust because no two Dr.’s seem to agree on anything anymore, so that helps about as much as a kick in the head.
More (((((HUGS))))),
Jen

Comment on article: fully inclusive classroom by TrainyBrainy » Blog Archive » Posts about Special Education as of October 9, 2009

Fri, 09 Oct 2009 18:42:54 +0000

[...] disability. With a moderate disability, the child will require some help with ambulation. article: fully inclusive classroom – mcdj.wordpress.com 10/09/2009 Jump to [...]

Comment on To medicate or not to medicate, that is the question! by emma

emma — Fri, 09 Oct 2009 15:27:42 +0000

Difficult descision, but yes at the end of the day if it is affecting Maddie’s life by restricting where she can go etc (as well as the lives of those around her) and no other solution has been found then I think medications have to be considered.

Dimitri has taken risperdol, but we took him off it after a few weeks as he seemed “rather than calmer. We came close to considering it again this summer, but for now things are running smoothly (although I’m not looking forward to adolescence)