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Children with Developmental Delays

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Need support!

Elizabeth - posted on 08/21/2010 ( 2 moms have responded )

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My precious angel is almost 5 years old. We have been through more tests than I can count, genetic, neurological, etc. We have been to developmental pediatricians and no one can find a diagnosis for him. All I know is global developmental delay. I first noticed a problem when he would hyper-extend his legs within the first couple of months of his life, which was due to low muscle tone. He was significantly delayed in everything...and still not potty trained. He can follow many directions and understands much of what I say to him. He can follow simple directions. He has some slight sensory integration issues...example-stepping from concrete onto grass. He doesn't mind physical contact...he loves it. He is VERY loving and full of personality. He would hug anyone who came up to him. Other than requiring glasses, he does not have any other medical problems. (He had problems swallowing when he was a baby and we had to thicken his liquids, but he has since grown out of it). They say he does not have autism. He goes to school at a developmental center and receives OT, PT, and Speech. I have a WONDERFUL family and friends, and although they want and try to be very supportive...and are, they don't really understand what I am going through. No one does unless they have been through it. My husband had been in denial and just recently accepted the situation. He tries to be supportive, but he is a man who holds alot in and always tells me my son will be fine. I would love any feedback from anyone...especially someone who may be dealing with similar issues.

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Catanna - posted on 08/29/2010

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this isn't a big help I know but I thought I let you know that you are not alone. I am only at the beginning of this process and at times scared that they can't figure out what is all going on with my daughter. She is almost two and is far be hind, she just started walking last week she walks like a drunk though. There is no speach and no understanding of what I'm saying or doing. The only thing I can get from a few people is that we might be looking at autism. I wish you the best of luck and I'm always on if you just want to chat.
Also I wanted to say my dad is in denial about his granddaughter and when we do say something all he can say is I knew something was wrong with her when she was born. He really hasn't talked to be since.

Julie - posted on 08/24/2010

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Hi Elizabeth,
I'm a pretty similar situation, my son is 5, he has global developmental delay also, like your son, he has had blood tests MRI scans on his brain and spinal cord, genetic testing etc etc but they can't find anything significant enough to make a diagnosis. My son also has hypermobility and low muscle tone (which is gradually improving). He is currently functioning at around the developmental level of a 1 year old, he doesn't walk, although he is now standing at the furniture and cruising a little, so hopefully won't be too much longer! He doesn't speak, just makes baby sounds, he understands a little (more than he lets on most of the time I think).

Also like you, my family are amazing and try to understand and are so supportive, but it's not something you can understand unless it is your child!

I think having a child like this is a mixed bag, sometimes I feel so lucky to have my special little boy, who is so loveable and sweet natured and has a smile that just melts my heart. Other days I get a dose of the "why me's", but these days are becoming fewer!
Don't know if this will help much, but at least you know you're not alone!!! Feel free to message me!

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