By Aty Piedra
My son Nicolas is 4 years old and suffers from L-CMD, a CMD subtype caused by a mutation in the lamin A/C gene. When Nicolas was 2 ½ years old, the local Early Intervention Program (EIP) evaluated him before his transition into the Pre-K Exceptional Student Education program (ESE). Pre-K ESE program personnel conduct their own evaluation of the child’s development, through which they develop an Individualized Education Plan (IEP).
At the time of Nicolas’ evaluation I had never heard of an IEP, nor was it explained to me. Needless to say, I was not ready for his first meeting. I went in armed with all of his medical records and had no idea what to expect.
Likewise, the IEP team had never seen a CMD case. They did not understand the extent of his weakness or any of the other issues that the CMDs present. We didn’t even know which type of CMD was affecting Nicolas, who walks on his own and has no cognitive problems. They determined that he was eligible for the program due to orthopedic impairment, and he was entitled to receive PT and OT in school.
Nicolas started school in August 2009. He was placed in a reverse mainstream class consisting of 10-12 children with varying disabilities, 4-6 “role models” without disabilities, a certified SPED teacher and a Paraprofessional. The second day of school Nicolas fell and busted his lip after being hit with the classroom door; it happened another 3 times in different ways. They underestimated what I had said about him being very weak and falling easily, with no balance or reflexes.
I immediately wrote a letter to the SPED program staff specialist requesting a personal aide for Nicolas. We had a meeting where I expressed my concerns for his safety and explained the need for an aide. They said they did not have staff available, but would try to get it approved. In the meantime, his IEP was modified slightly to accommodate his needs, which included more attention from the Paraprofessional during certain activities through the day.
A couple weeks and many calls and e-mails later, I still had not heard anything from the SPED program administrators. During this time, Nicolas came down with a bad cold that resulted in pneumonia. This was the last straw. Frustrated that our requests had gone unanswered, I pulled Nicolas out of school, fearing that he could get badly hurt or that another bad cold would send him to the hospital again.
I believe the biggest barrier we face in these situations is the lack of information and knowledge about CMD in general. And the modest budgets of many school districts and Department of Education programs further prohibit adequate care for children with disabilities.
In April of 2010 I decided to restart my pursuit to send Nicolas to school with the one-on-one aide needed. I did my research and became far more educated as to the rights and support systems available under the Individuals with Disabilities Education Act (IDEA). I found a local Family Counsel Advocate with autistic children of her own, who knew exactly what I was going through and guided me in the right direction. I learned that I could not simply accept the little offered as a favor, or show any hesitation when informing the school of Nicolas’ special needs. I realized that no matter how difficult the system could be, I just couldn’t give up. I would have to pursue any means necessary to ensure my son would receive everything he was entitled to receive.
In May of 2010 Nicolas’ IEP was renewed, and included a part time one-on-one aide during lunch break and outside playtime. Nicolas now attends an inclusion program class with 50% non-disabled peers, a certified SPED teacher and a Paraprofessional. He absolutely loves school, loves having friends and is enjoying every minute of it. He has come up with his own way of letting his friends know about his weakness and impairments.
Soon, my battle will restart when Nicolas transitions from the Pre-K SPED ESE program into Kindergarten. However, we’ve learned to take each day one step at a time.