Denise Gionet's Comments

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At 2:04pm on August 25, 2010, Suzanne Desmond said…
It's a shame in this country of the USA that parents of special needs children need to fight so hard to get the education that our children deserve & need. Sounds like you been through alot as well. God Bless, Suzanne
At 2:24pm on August 23, 2010, Suzanne Desmond said…
I will get as much information as I can & get back to you asap. I can't believe they would not give your other son the services he needed based on the fact he never had services before. That makes me so angry. Talk to you soon.
At 1:36pm on August 23, 2010, Suzanne Desmond said…
To be honest I don't know either. I was introduced to a group by a friend who had gone to one regarding her son. The advocate group I go to here in Buffalo is called Agapa. I could ask them how to find one in your area if you would like? I know your a teacher by trade, but I think an advocate group would be very helpful to you. Parents don't know all the educational laws that are out there & who has time to read all that. I will get this info for you. Maybe even Jill Anne Castle could tell you what steps to take, I don't know. God Bless, Suzanne
At 12:31pm on August 21, 2010, Suzanne Desmond said…
Not sure on the date for spring 2011, but this year they ended on June 24th I believe, take a day or two. It doesn't get hot around here until the last week of June so it's not so bad. Ever since I can remember school always started after Labor Day. Labor Day weekend is a big holiday in Buffalo, we consider it our last summer weekend. I don't blame you for being nervous, but just ask questions where needed & always make yourself available to speak with in other words a hands on Mom/parent. That way they know you care & above all are keeping an eye on him & them his educators. Have you gottn in touch with an advocate group?
At 11:56am on August 21, 2010, Suzanne Desmond said…
He was in a Summer School program that ended August 13th. The new school year starts up September 8th for him. His brother & sister start September 7th. In Buffalo they start school after Labor Day. Is Brian all set for school?
At 9:34pm on August 18, 2010, Suzanne Desmond said…
Unfortunately this diagnosis does not give us the luxury of waiting. Do what you have to for your son when you have to. I hope and pray that they come around. God Bless
At 9:26am on August 17, 2010, Suzanne Desmond said…
Glad to hear that. Hope all goes well. ~~ How is everything with your with your husband & mother-in-law in regards to them accepting your sons diagnosis?
Suzanne
At 11:13am on August 16, 2010, Suzanne Desmond said…
Hi Denise,
Just wanted to know if Jill Anne Castle help you out in any way?
God Bless,
Suzanne
At 3:33pm on August 6, 2010, Suzanne Desmond said…
The bottom line is that your husband & mother-in-law just might not be in the same place that you are right now. Give it some time & keep educating yourself & doing what you feel is right for your son, yourself & your family & I'm sure they will both come around. Hope I helped. God Bless :)
At 3:27pm on August 6, 2010, Suzanne Desmond said…
Sorry to hear about your struggle with your husband & mother-in-law. Me & my husband went through our denile as well, took me less time to accept the diagnosis than my husband Steve. He still struggles with the diagnosis, but has come a long way. He did not go to appointments for a long time & I have taken that roll on more than him, but last summer he went with me to Cincinnati's Children's Hospital Medical Center for a few days of appointments & I think he learned alot about himself & Francis I guess what I'm saying is he is trying to cope with it.
At 11:39pm on August 5, 2010, Lisa Anderson said…
That is great news that the doctor didn't see any weakness. Small wins!
At 10:47am on August 5, 2010, Suzanne Desmond said…
No 2 doctors know the same things or are educated in the same things. Just like no 2 MDA clinics are the same either. Thank you for letting me know about this. I already knew about it & in fact have told the whole family about it as well as some close friends & babysitters about this subject, just in case an emergency comes up & I'm not with him at the time. Not all doctors are aware of the this problem.
At 10:02am on August 4, 2010, Suzanne Desmond said…
Glad he is doing well. So glad you told me about this.
At 10:02am on August 4, 2010, Suzanne Desmond said…
Yes it is a relief, but I'm not going to get to relaxed, because anything could happen.
At 10:28am on August 3, 2010, Suzanne Desmond said…
I hope I have helped you with your situation.
At 10:24am on August 3, 2010, Suzanne Desmond said…
I have to say I have never seen this. To be honest I never heard of that either, but I'm glad you brought it to my attention. When we go to Cincinnati Children's Hopspital Medical Center next month I will bring it up with Dr. Brenda Wong, his Neurologist.
At 10:18am on August 3, 2010, Suzanne Desmond said…
He is allowed to go to school until he is 21 if needed in his school district due to his disability. He is also allowed to go till he is 21 there as well under my understanding.
At 10:15am on August 3, 2010, Suzanne Desmond said…
Fortunately in my case my attorney charges the school for all her fees, not the parents. I think that is awesome of her.
At 8:37am on August 2, 2010, Lisa Anderson said…
Connor is 7 and we have not seen this. He has had cramps in his arms (that is how we finally ended up at the neurologist who diagnosed Connor b/c I knew he couldn't get arm cramps from "toe walking" that he would "outgrow") Our neurologist actually found that Connor has not very much weakness in his legs but he did detect some in his arms. Lastly, to my fear, our neurologist told us that there is not a razor sharp line between Beckers and Duchennes. It is really kind of like a guess as to how each individual will progress. Connor was diagnosed by genectic testing so our neurologist told us that he can say that Connor has Beckers with 92% accuracy. To be more certain he will watch how Connor progresses over the next couple years. Connor goes to UN Chapel Hill in Aug. I will be praying for your son and family.
At 10:58pm on July 29, 2010, Suzanne Desmond said…
Hope you find answers that you are looking for & find a place that will help him in all his education challenges. Don't give up. You may have to hit alot of brick walls, but that only means that is not the right place for him. I'm here if you want to talk. Suzanne

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