Post

Our Daughter Was Born With Spina Bifida

On October 13,2008 or daughter Abby was born. Abby's hole was  the L5 S1 area. Within 48 hours after being bon Abby had the hole closed and had A VCUG shunt placed in her head. Since then we have had many specialists and therapists see Abby. Currently we have aphysical therapist twice a week, a speech therapist once a week, a developmental therapist twice a week and are working on getting an occupational therapist. She can point to objects that she wants but she is unale to speak. We are waiting on school officials to get back to us so we can place her in the best program for her needs. We are apprehensive about sending her to school being that she could not walk or talk on her own yet. Any feedback from anyone with a similar situation will be greatly appreciated.


                Thank you! 
Redman34 Redman34 31-35, M 3 Responses Aug 21, 2011

Your Response

Cancel

Hello,

My son Noah is 15 and he was born with L5S1 Myelomenegeocele he had a VP shunt place at 5 days old(revised 5x's first revision at age 12) Bladder augment + ACE+ CIC every 3 hours. He began walking at age 3.5 years. He is in 9th grade at a very small charter high school.

I will not sugar coat for you that school is going to be a long hard battle. there will be teachers, administrators, special educators, school nurses, social workers(get the social workers aka cps far away and fast!) they will make you feel like you have no clue! Always remember YOU KNOW Abby the best! You are the only expert about your child. The school cannot deny what you feel is best for her. know your rights. If you do not agree then it is the school districts money that you can use to get testing done by someone you choose.

It is very emotional and you need to keep calm when in meetings,be patient, listen to every reason they give for stuffing your child in a box that they put all of the children that they have no real resource or compassion for. DO NOT SIGN the IEP or IFSP if pre-K. Even if they insist do not sign. Take it and use the plan to work around. If you think there is a program that is right for Abby you can add the name of it location and how much time she should be ready for. Then find your PT OT Speech teachers and they can be "push in" class or "pull out" services. If your district claims that there is no room for Abby. You can get the district to pay for her private schooling. It is her right to a Free Appropriate Public Education in The LEAST Restrictive Enviroment. She may or may never talk but she should be with her peers. I know it will be tricky with the kids as well. If you are a presence and they are all educated about empathy through honesty. Abby will have the best shot that you can give her to land into a well adjusted college/votech/career/advocate student just like Noah. His first quarter report for high school looked like this...Spanish I=A-/Algebra I=C+/English Comp=B/English Lit=B-/History=C-/main Lesson specialty blocks C and a C+/Choir=B not bad for a guy who cannot score above a 98 on an IQ test. Trust your self and contact me anytime if you feel frustrated. I will talk you down. Oh yes I almost forgot Noah has been performing Shakespeare twice a year since 6th grade, even though he still needs speech therapy due to isues from low pressure hyodroceph.

Go Team Abby!



Sincerely,

Amy

My son was born the same year. He has SB in the L5 S1 region too. How is your daughter doing? Did you decide to try out school?

We are meeting some resistance..there are 2 programs available and the school is leaning towards the program less beneficial to Abby. We have to go back to the school the firs week in september. Are you meeting the same kind of resistance with your son and the school system?

i am so sorry you have had to go through so much with your baby But i can see abby has loving and caring parents and imo nothing can beat that i wish you and you lovely daughter all the best for the futer



love bluebell2