where parents of kids with special needs connect

Fragile X and autism

Hi, I'm Bonnie, I have twin boys with Fragile X Syndrome and autism. They are 6 and have around 6 hours of ABA therapy almost every day. They just finished kindergarten. I also have a (typical) daughter who is 8. Anyone else with Fragile X children?

Tags: Fragile, X, autism

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Permalink Reply by Mary Torgusen on November 30, 2011 at 7:52pm

Hi Bonnie,

I'm Mary from Mankato and have twin adopted daughters Caitlin and Courtney and they have FAS and have just been tested for Fragile X. I won't know for another week what the result is. I also have a 29 year old birth daughter. My girls have sensory obstacles along with developmental delays and one twin was born with club foot and left calf muscle underdevelopment and left butt cheek, cloacal anomaly, imperforate anus, and some other interesting features, as I delicately call them. I've read some about Fragile X. Where do they attend their daily therapy? I've been looking at a Special Education Private School in Plymouth. It would mean moving, but I'm beginning to think it would be worth it, after dealing with another DD child the last 8 years in the public school system, who is in my childcare. I hope things are going ok for all of you.

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Permalink Reply by Bonnie Korman on December 1, 2011 at 3:05pm

Hi Mary, I'm originally from New Ulm and went to college in Mankato, I'm quite familiar with the area! That's quite a list of things your daughters are dealing with. My boys have been doing ABA therapy for about 3 1/2 years but we are in the process of ending that and going with OT and speech therapy at Courage Center. I really love Courage Center, we went there for awhile before we started ABA, too. I am in Dakota county and I'm told this is a great county for special needs services. I am sorry, I don't know much about services anywhere else. We were pretty lucky to be living here when the boys were diagnosed.

It is wonderful to meet you!

Please email me at bkkorman@aol.com to chat more, and if you want to you can check out my blog too at www.fragilexfiles.com.

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Permalink Reply by Heather Amy Price on December 25, 2011 at 7:50pm

my twins have autism but not fragile x. Here, to get ABA you have to leave public school and take the autism scholarship ($20,000). $20,000 gets you full tuition at exactly 2 schools, one of which doesn't offer a lot of ABA (just a little-- not worth switching schools at this point)... the other is far from us. The schools that DO offer a lot of ABA are $70,000 + and the scholarship will only cover $20,000. So I WANT ABA for one of my twins but have no way to afford it right now.

So my twins are in public school with PT, OT, speech, special ed, and no ABA. I wish I had a crystal ball to know if I'm making the right decision.