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Raising Special Needs Kids Raising Special Needs Kids

is this normal?

Posted by on Sep. 1, 2014 at 11:13 PM
  • 10 Replies
So my son was born with a lot of complications. Some range from mild to severe. I'll just tell you all just what they are. He has 2 chromosome abnormalities weaver syndromesyndrome associated with brown growth abnormalaties an micro deletiondeletion which is associated with learning disabilities. Former plagiocephely. Pendcitis. Severe scoliosis. Left foot calvognasos. Vesicouretal reflux. Genetic councling. Hypotonia. Prenatal hydronephrosis. He also has a abnormal brain MRI. He has physical therapy every week. I feel so overwhelmed with everything going on. Not for myself but for my son. Is this normal? Is it normal for microdeletion to really be associated with learning disabilities. Like can you beat it? He already has delays now. I wanna know how to help prevent his delays. Learning wise. I dk really how to do it. He is only 13 months.
by on Sep. 1, 2014 at 11:13 PM
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Replies (1-10):
mandee1503
by Amanda on Sep. 2, 2014 at 5:17 AM
I don't have any idea how micro deletion effects kids. I'm sorry. But you have a lot to deal with and it's overwhelming some times. *hugs*
darbyakeep45
by Darby on Sep. 2, 2014 at 5:53 AM

Welcome and big hugs mama!  My son has several brain abnormalities including hyper-myelination, enlarged ventricles, and scars all over his brain.  He also has a 16p Chromosome Duplication, Aarskog Syndrome, Cystic Fibrosis, Autism, and a few others.  Trust me...I get it.  

Take it one day at a time.  That's all you can do.  Focus on all the good that comes from your son.  Focus on his happiness and not on the things he can't do.  

Cindy18
by Gold Member on Sep. 2, 2014 at 6:30 AM

I agree with Darby. Take it one day at a time. 

Learning Disablitites aren't really something you "beat", IMO. It's something that can be worked around. You learn how to compensate for them, you learn alternative ways to learn. You always have the issue but you don't let it stop you. Does that make sense?

Bluecalm
by Silver Member on Sep. 2, 2014 at 7:43 AM
Microdeletion on which chromosome? Some are associated with a learning disability and some are not, plus each person is different.
Momof4AEMW
by Gold Member on Sep. 2, 2014 at 10:47 AM

I agree with Darby.  Two of mine have ID from syndrome or brain injury.  We celebrate all they can do, provide needed therapies, and hope for the best outcome.  Positivity will take you both a long way.  hugs!  Welcome to the group!

Quoting darbyakeep45:

Welcome and big hugs mama!  My son has several brain abnormalities including hyper-myelination, enlarged ventricles, and scars all over his brain.  He also has a 16p Chromosome Duplication, Aarskog Syndrome, Cystic Fibrosis, Autism, and a few others.  Trust me...I get it.  

Take it one day at a time.  That's all you can do.  Focus on all the good that comes from your son.  Focus on his happiness and not on the things he can't do.  


arkansasmama08
by Gold Member on Sep. 2, 2014 at 9:26 PM
Hugs mama!! I can see why you're overwhelmed! I agree with Darby. Take it one day at a time and tackle each issue as it comes up. Yes, I know that's hard to do, but it helps.
luvnature
by Member on Sep. 3, 2014 at 7:40 AM

What exactly does his brain MRI say?  Did the doctors tell you how his brain is shaped? 

I am asking because my dd has an abnormal brain MRI too and I am curious to see if someone else's child has the same brain deformity as her. 

MamaLauri
by Bronze Member on Sep. 3, 2014 at 8:33 AM

Hugs.Hearing your doctor telling all this has to be scary.

The brain is highly plastic. Almost all children can learn. Some need more and different support. My kids were both born with challenges. My oldest was obvious at birth. He needed surgery, but needed to be big enough to do the surgery. No doctors in my state were willing to do the surgery.

In the end, things worked out. But there were lots of challenges and joys along the way.

It is normal to feel overwelmed at times. After a while you need to shake it off and be his best avocate and teacher.

The group collectively has enormous experience. What delays do you want to work on?

dawncs
by Dawn on Sep. 3, 2014 at 9:25 AM

As a mixed family on inherited genetics, I got it on both sides. It is a royal pain to deal with at times. It took me 45 years and a day to get diagnosed with a metabolic disorder because I was slow moving thanks to having a gene that prevented really big complications. The diagnosis happened the day after my 45th birthday. Trust me. Mine is no fun to deal with at all, and I am barely controlled on my current meds.

Linagma03
by Gold Member on Sep. 3, 2014 at 6:46 PM

Welcome to the group! I know how scary this can be. I wasn't able to get a doctor to consider the possibility that there was something wrong with her even tho she missed every milestone by months and months. When she was finally seen she was almost 2.5 and just learned to walk and still needed to hold someone's hand to keep her balance. She is almost 11 years old now and is doing a lot of things that I was told she most likely wouldn't be able to do, like read or write. She can read some sight words and it took until about 6 months ago for her to be able to write her letters correctly. She can write sentences if it is written for her to copy. She learned to button another skill that she just accomplished it took her 6 years to master. I celebrate all the little things because that means that she is doing something that at one time they thought she wouldn't be able to do or wouldn't be able to do very well. She has some scar tissue on her brain also, she has 2 chromosome abnormalities they are heavy duplications on one gene range she has 20,000 to many base pairs, on another she has 2,000 to many base pairs she is the only one currently known with this combo so we don't know what to expect we do know that she has developmental delays, she has issues with her heart, kidneys, liver & digestive system, she has seizure disorder, and is developing sensory issues. 

The learning issues are hard to say because each kid is different and just a very small change in the deletion can affect the entire range of abilities. 

Take it one day at a time and celebrate the small accomplishments as they come and don't let anyone tell you that he CAN'T do something because it may take a long time to do it. 

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