I am the mother of 3 boys, Nixon, age 11, Hunter, age 8, and Jacob, age 7. Nixon was diagnosed with DMD at age 3. I have learned many lessons on advocacy but it seems I know nothing. I really hope to make some connections who can help me be a better advocate for Nixon.
In my spare time, I love to run but most of all, I love to spend time with my boys!
About my family:
Married to Shannon
Have 3 sons, Nixon - 10, Hunter - 8, and Jacob 7.
My family is very active in Cub Scouts/Boy Scouts.
Name(s) of child(ren)/individual(s) with Duchenne:
My name is Emily Gregory. I came across your page as I was keeping in contact with someone else and saw that private school didn't work for your son. Just curious as to why it didn't work....we are planning on sending our children to a private Christian School here in Birmingham. We are also zoned for a great school system, but we go to church where the school is and we are really desiring to send our kids there. My son with DMD is Beau and he is 3 1/2. Just wanting your thoughts and maybe some specifics on why private didn't work for you. It is really hard to plan for the future when we don't know what Beau's needs are going to be.
Thank you for your input!!!
Brandon has a a little bit of a learning disability. He has always been a little behind in reading and writing....but has improved greatly. He is in 7th grade, but I have him on the 6th grade level in English and Reading. That is another thing that is good with homeschooling...you can go at your own pace. Sometimes we will double up on a lesson in a subject or two; thinking maybe I can catch him up to his true grade level if possible.
Ga requires you to sign a "Declaration of Intent" to homeschool, send it in and monthly send in attendance sheets. That's it. And every three years they have to test...but we haven't gotten to that level yet. I spoke with a lady that goes to church with my parents and she gave me alot of info on homeschooling. There is a store in Alpharetta called "Homeschool Hangout" and you can go there physically and buy your books, instead of trying to pick the correct website to order from.
I have also heard of online schooling where it is actually all "online". How they respond, instructions....but have not checked into it as of yet. I'll keep you posted. My sister-in-law uses it, so I plan on just asking in case we decide to do this at a later date.
Yes I do homeschool. I started when he was going in 6th grade; he is now in 7th. It got to be too much in public school. We started Brandon in a private school at the beginning of 6th grade; but ended up pulling him and homeschooling him. Brandon actually developed a colon disease also (speak of lightning striking twice!). So bathroom issues were definitely starting to build.....another reason we felt homeschooling was best.
We will definitely get the boys together soon! Brandon is very shy at first also; and he also just needs a little time to open up, so they are really alike in alot of ways.
Hi Deidre! I am so glad to find someone close to me! My son is 12 so they are very close in age. Maybe you would like to sometime get our sons together. Isolation from other kids bothers me so much; it is just the way children are; they don't see the REAL person inside. Do you homeschool? Just wondered; please write back!
Great to hear from you and thanks for your kind words. I wish the same for your Nixon! Have you seen the movie? Can you help us spread the work throughout the PPMD community? Darius and crew are trying to sell one million DVDs this year. If they succeed, they will raise $17 million for DMD research!!! Please send folks to our website to purchase one or more DVDs. And since you're so close to Athens, bring Nixon here to meet Darius some time! Take care.
Welcome Deirdre to PPMD Community. I am sure you will find the support and help you need here. I am so sorry you are having such difficulty with your insurance company for Nixon's surgery. Keep calling your insurance company and write a letter of appeal. I don't really have any other suggestions but be persistant and keep trying. It is riduculous how much we have to fight but we do it for our boys to give them the best life possible.