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My son who is developmentally delayed

Michelle - posted on 06/22/2010 ( 15 moms have responded )

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I have a 20 month old son who is developmentally delayed. He has torticollis, optical nerve hypoplasia, and has an enlarged ventricle in his brain. We just recently had an EEG and he is having mild epileptic episodes and was placed on seizure medication. He seems to be adjusting fine to the new medicine. We are getting ready to have botox treatments in his legs to help him stand and learn to walk. I have heard many success stories about these treatments. Sometimes I feel depressed when I see other children his age doing things and he is not able to do. Does anyone else feel this way? I am glad I found this place to see that there are other parents who are dealing with issues similar to mine.

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Mary Liz - posted on 06/28/2010

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I too understand. My son has 1p36 duplication, absent cavum septum pellucidum, optic nerve hypoplasia, cerebral palsy... the list can go on. I have my son in therapies, alternative therapies, and I'm doing what I can for him... so later down the road, if there's something he can't go or can't do as fast as other kids, we will know at least we try our very best. My son wears glasses and AFOs and often other children will ask him why he's wearing them. I teach him to answer politely and simply say "they help me see" or "they help me walk". I often see parents try to hide their kids or shelter their kids.... I try not to do that, I try to teach him that he is a little different and that he may have to try a little harder than other kids but I believe that it helps him be a stronger character. -Mary

Melissa - posted on 06/26/2010

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Hi My son is almost 20 years old. he has CP due to a underdevelopement of the right hemisphere of the brain. i agree wholeheartedly with summer parker. I have always held to the fact that God will not give us anyting we cannot handle with his help. My child has been through many terrible torments and trials over the past 20 years and i have shed many tears, but there has ALWAYS been a blessing in the end. it may be a smile from him or hearing mama occasionally but it is always there. Corey has been a blessing to everyone who has ever met him. I have become a much stronger person and a better person for having been given the blessing of caring for Corey. I would have never taken anything for the years i have had so far. I pray for many more, but God is in control. He has always brought me through and i believe he always will.

Katie - posted on 06/26/2010

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My daughter is now 9 and i used to feel the way you do but a little less now as i watch her get older. I found out at 2 she has Di George Syndrome, Her speech and physical and mental ablities are behind kids her age, I felt bad for a long while and then i noticed that she noticed that i felt bad for her. She started to feel bad for herself. I realized i had to think of all that she can do and all that she will do and all that she overcome. She still isnt doing as well as the other kids and she never will. Every day that she she wakes up im just happy that she is here and enjoying the things that she is able to do even if its not as well as the other kids.

Renee - posted on 06/23/2010

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My son is 13 and has Cp,OI and mental health issues.I don't listen to oh he'sonly such and such age from specialist.I treat him accordingly.He's in a regular ed classroom with 1 on 1 para and learning. Nigel's come a long way and that's what I focus on.Tests shoe his IQ is 71/borderline but we all know He's not retarded.He understands way to much.
It. may be a little easier for me because I'm also a person with a disability I have surgery controlled Epilepsy and I had massive stroke at 15.we're involved in Self-advocacy and disability rights movements.Nigel has pride in being disabled.

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Lakshmi - posted on 12/14/2011

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Hi Michelle,
I am new to this site. I have a 18 month old son with 1P36 deletion syndrome. He is not able to walk by himself ... neither does he talk. Life seems cruel sometimes...I can totally understand you as I feel the same when I see children of his age. Would be nice to know if you have done that botox treatment to your son.

Michelle - posted on 06/28/2010

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I feel so much better knowing there are othe parents out there that are dealing with similiar problems. We just put our trust in the lord and we know he will get us through these times. My son is doing better. His therapist say as long as he is going forward, that is always a good sign. Thanks again for all of your encouragement.

Rebecca - posted on 06/26/2010

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Hi Michelle I to am a mother with a child that is developmetally delayed he is 20 years old now and I was told by the doctors that he would never walk talk read or write and thank God he can do it all so just keep your head up and when you feel depressed because he can not do what other children do. All I can say is just put it in the hands of the Lord because through christ all thing are possible and pray that God will one day let hime run and play just like the other children in your neiborhood I will make sure to pray for your son every night that god will make him strong and keep you strong as well, I know that with out god I would never have made it with my son.

Linda - posted on 06/25/2010

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my now 16 yeaar old grangdaughter that i have full gardenship over had simler problems with water on the braine and the ventrcle was enlarge could't walk till she was 3 i took her 5 days a week 40 miles rt. for pt. she still walks with a gate but she is walking she can't raird a bike and will never drive but i love her and i don't see her as a spical needs child but she is god bless my with her. don't give up things will work out with god in your life

Michelle - posted on 06/24/2010

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Thank you for all of your support. We are truly blessed to have such a beautiful baby boy.

Iridescent - posted on 06/23/2010

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My 3 year old daughter just got her casts off her legs this morning! She has Congenital Short Achilles Tendons. We had initially been told our only options were casts and surgery, and her metabolic specialist informed us she knows a much better ortho in her clinic that treats it with Botox. Today when her casts were removed she was so wobbly, weak. She had good improvement though, and it appears she will be ok without it but we won't know for sure for several months. She needs PT twice a day on her ankles, and will have AFOs on for 6 months minimum. I hope things go well with your child! My daughter has done better from birth than all doctors have expected.

Carrie - posted on 06/23/2010

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My son is 5 and has the developmental ability of his 3 1/2 year old brother which is great because they play well together and learn things together, but it is hard when he is with other kids his own age who are not in his special ed class. Unfortunately, sometimes you get used to it and sometimes you don't. There are times I feel I am okay with things and then they change.

Summer - posted on 06/23/2010

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My son was born at 32 weeks. he too had Tort of the neck, he missed all his milestones and is delayed as well. We have just been told after having a MRI at he has spastic CP in both legs. He also is being seen by a genetic's team and possibly has 2 separate genetic syndromes. I know its tough, when you see children surpassing your child and trying to teach them the simplest thing that most children can grasp easily. But I have to believe that everything happens for a reason. My son has taught me patience, new respect for those with disabilities and and a new level of love that I never knew I could feel. He is my hero. Everytime I get down, I look at him and realize that I have nothing to complain about. We are given these children because we are choosen to and lucky enough.
All the best

Julie - posted on 06/23/2010

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I can relate completely. My son is 5, but developmentally he's about 1 year, seeing children his age doing things he can't doesn't bother me as much as seeing younger children, well babies really, doing things that he can't, I'm beginning to get used to it, I think you have to, but it still breaks my heart a little everytime! Saying that, although it is hard sometimes, I wouldn't change him for the world because then he wouldn't be the boy I fell in love with!

Meg - posted on 06/22/2010

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I know just what you are going through... my daughter who is now 5 did not walk untill 2 1/2.... not even four months later her baby brother started to walk. I am so happy to see her develope phys/ & devel... but it seem to be right before or after her brother or his friends hit the milestone... so I still wonder if she will ever catch up to her age... (the only thing she seams to be ahead of/or on target w/ is reading and spelling : D )
let me know if you want to chat...

Donna - posted on 06/22/2010

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I understand how you feel. I have a 7 yr old son who is the age 4.5 in his mind. He will be in the 2nd grade this year. Other kids his age can be so mean, but then so can the teachers. They do not understand. It is hard to see your child suffer at the hands of such hatefulness. I like to think he doesn't see it, but I know he does. He is really smart in many areas of life, but all in all, his mind is still that of a 4 year old.

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