Lorie Ann
Student Diva
Unless your name is Google, don't act like you know everything.
Posts: 208
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Post by Lorie Ann on Jul 12, 2011 16:01:58 GMT -5
Just wondering if there are any other scrapyland scrapers who have a child(ren) with medical or special needs? Abby, who is 8, has Asperger's, Anxiety, Dysgraphia (trouble getting thoughts onto paper and trouble with hand writting), OCD tendencies, and Sensory Processing Disorder. Matthew, who is 5, has Autism, Sensory Processing Disorder, is SBS, failure to thrive, has severe allergies, pulmonary hypertension, Osteopenia, Moderate MR, and an unknown rare genetic syndrome. His blood has been in New Zealand for almost 2 years for an MLPA Gene Study where the entire X chrom is looked at. A grant paid for it! It originally went there for Synder Robinson Syndrome but came back negative. Genetics and Neuro said they must have spotted something because labs just dont go ahead and do the MLPA since it is very costly. We should have word by Dec (we hope!!!!!) Thought it'd be nice to have a weekly check in to see how everyone is doing and maybe have a place to vent or ask questions.  |
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Post by Basketlady on Jul 12, 2011 20:13:37 GMT -5
Wow, Lorie Ann. You sure have your hands full!
DS (14) had an Asperger diagnosis that was removed just over a year ago. He was reevaluated after we moved to Boston and no longer qualified by about 5 points. He's very high functioning and was always borderline. It's a testimony to good therapy and a lot of hard work on his part.
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Post by pixie on Jul 13, 2011 7:45:01 GMT -5
I have spina bifida, but I don' t have any kids. Wasn't something I was willing to pass on.
Barbara
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Post by mulchlady on Jul 13, 2011 8:12:15 GMT -5
I have a 23 year old special needs daughter. She has Turners Syndrome and has been diagnosed as Multiple Handicapped. She now lives in a group home due to behavior problems.
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Post by chili on Jul 13, 2011 12:07:33 GMT -5
i have worked with special needs kids for 8 yrs now as an educational assistant [which means we usually have the kids  ] and have dealt with all that you have mentioned..... we even have one child coming up to highschool in 2012 that has that special x - his mum and dad both work at the school as well....... i have always enjoyed my time with 'my' kids sometimes it is hard, but i know a lot of parents have tried special diets, prayer etc and the love that a special needs child can show in return!!! oh my goodness!!!!  you know it is from the heart my hubby used to work at the child development center before we moved out here and is now a youth councilor in the school system i know that it is totally different to work with a child than it is to live with one, but i would love to learn from the parents so that i can do my job better so if you want to start something like this on the board and it is allowed, i would definitely like to read thanx blessings |
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Post by crazy4pink on Jul 13, 2011 12:57:26 GMT -5
3 of my siblings have seizure disorders. As childred growing up they had problems, but now they are controlled with medication. My youngest sister was in a car accident about 5 or 6 years ago when she had a seizure while she was driving. She is fine now and driving again. Cindy |
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Post by luv2scrap on Jul 13, 2011 19:49:23 GMT -5
Lorie Ann, You certainly do have a full plate. It makes me re-evaluate the load I carry. Our issues we deal with our much less than what you have and with the harder issue we have 24 hour care in place. Thanks for posting Lorie Ann, I'd love to be in touch with you and offer my support to all and when times do get rough have someone to relate with. Take each day or at times each hour one at I time. May you be blessed on your journey. A Mom like you has to be very special.
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Post by susie on Jul 13, 2011 21:22:13 GMT -5
Hi Lori, My heart goes out to you as you obviously care deeply for your children and are in the midst of navigating a very complicated system. Do you mind sharing where you are from? Our son, Christopher, was diagnosed with autism (classic) when he was 18 months. We live in Madison, WI where he was the first child in the school district to receive the "autism" label. This opened the door to many unique services that helped teach me how to teach him. He is now 22 years old and we have been so fortunate in receiving excellent care for him. He didn't talk until almost 5 years old and although he is cognitively disabled but learned to read (via discrete trial method) and loves the computer! He loves water & goes swimming 365 days a year which helps modify his obsessive compulsive behaviors. He loves routine.... Because Christopher is older I am not as knowledgable about current therapies etc. But I can provide hope as I have learned lessons from Christopher and others who have cared so well for him & our family. That is enough for now but know I would love to hear more about your children. blessings, susie |
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] and have dealt with all that you have mentioned..... we even have one child coming up to highschool in 2012 that has that special x - his mum and dad both work at the school as well.......
