My “Special Need” Kid

My son was born with a hereditary condition which causes the connective tissue in his body to be very loose.

The connective tissue can effect the body in multiple ways. Presently, he stands 5’2 inches tall and he is not yet 11 years old. His arms and legs are longer than other children his age. The overgrowth has made him klutzy because he has very low muscle tone.

Since he was a baby, he has had constant check-ups by the cardiologist, orthopedist and ophthalmologist since the heart, eyes and skeletal system are often most effected. He has been wearing glasses since he was 2.5 years of age because he is nearsighted in one eye and he started to wear a body cast for scoliosis starting at 3 years of age.

Even though this is an inherited condition, we did not know our son had it until we did a very extensive blood test to confirm that he had the mutated gene. Once confirmed, we knew that the scoliosis (60 degree) that he had was from the condition.

As stated, starting at 3years old, he started to wear a body cast that would wrap around his torso. We had to do “dry showers” for months. The cast would be changed every 3 months and he would have two weeks of freedom. The cast was supposed to correct the curve, but it only corrected it when he was in the cast. The curve would bounce right back once out. We casted four times – each time having to put him under anesthesia. He would be spun like a rotisserie while they put plaster on his body. We finally gave up after he was in Kindergarten and put him in a brace throughout his 1st grade year. In June of his 2nd grade year, he was operated on. Magnetic rods were placed in his back and he had to be out of school for the remainder of the year.

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The reason why I wrote this is to tell you what I did for him so that school was little “easier.”

• First – he had home instruction that whole month of June, into July from the school. The Principal was great and accommodated us so that he wouldn’t miss out on his school work at all. He even called us when he was in surgery to check on him!
• Second – we created a 504 for him. Unfortunately, the condition also affects his “fidgetiness” and “inattentiveness” so I included some modifications that I wanted for him.

Before he entered Kindergarten, I composed a letter, which I signed and sent registered mail (not necessary to send registered, but…) to the Child Study Team. I wanted a full child study team evaluation so that I could get him classified. They denied me at that time because they didn’t feel that it was making an “educational impact.” I agreed to a 504 plan. But, finally…..

• Last year – My request was granted and I had him evaluated for an IEP. They wouldn’t test traditionally because, academically, my son is doing very well, but I got them to consider classifying him under “Other Health Impaired” (OHI). A 504 was great, but it wasn’t enough for me and I wanted more for him when he transitions to middle school. Now he has things in his IEP like (keep a set of books at school and at home – for his back). Could that have been written into a 504? Yes!

I am happy to report that he is doing very well, but we have a long road ahead of us. He will need surgery again to “fuse” his spine and we will again need home instruction.

I wanted to share this story to help in case you are going through similar (not necessarily scoliosis) and not sure exactly how to navigate through the school to help your child. If you have any questions, please don’t hesitate to comment below or write us directly at Support@Counselortips.com.

Here are some resources that I found that may help:

The Complete IEP Guide: How to Advocate for Your Special Ed Child

The IEP from A to Z: How to Create Meaningful and Measurable Goals and Objectives