We are Los Angeles area parents of an exceptionally happy and bright nine year old son who also happens to be a child with special education needs. Since his birth in 2001, he has had feeding therapy, speech therapy, occupational therapy, educational therapy, recreational therapy, adaptive physical education and a behavior plan for off task behavior. Due to the Individuals with Disabilities Education Act (IDEA), our son was able to receive services in Los Angeles so that he could prosper in a normal classroom setting. None of this has been easy.
Navigating through the world of IDEA, we have experienced many obstacles. We have had eligibility issues, multiple IEPs, sometimes two or three a year, and have gone to mediation on four separate occasions. Since he is only in third grade, we know there will be many more years to advocate for our son. Along the way we have learned many things about special education law and the IEP process. Although we are not attorneys, we have become passionate about helping others who need advice dealing with their child’s IEP. We think our experience can help guide you through this complicated process and help you negotiate services for your child.
Our son was born in February 2001 and weighed in at a huge 5 pounds 4 ounces at full term. Our son, who we named Michael, was nicknamed peanut by the nursing staff because he was the smallest infant in the nursery. Because he was so small, the nurses told us we needed to feed Michael every two hours. We were under the impression that children came out of the womb knowing how to suck. While most children have this ability, Michael did not. We would spend an hour trying to get him to drink a half an ounce of formula, and then we would have to start all over again in an hour. It was very difficult, but he eventually overcame that obstacle. The next hurdle arose at about 9 months when the pediatrician recommended adding solid foods to Michael’s diet. We noticed two things right away, 1) Michael didn’t like eating certain textures of baby foods and would throw up often, and 2) while it seemed like he enjoyed Ritz crackers or other solid foods he didn’t know how to eat them. Typically, he would mash up the Ritz cracker in his mouth and instead of swallowing them, he would push them out of his mouth with his tongue. Around the same time, Michael’s personality really started to blossom. Even though he struggled to eat, he was one of the happiest babies around. When we went to his pediatrician and explained his eating problems, we were sent to our first of many therapists. A Speech Therapist came to our house to evaluate him. She told us that we needed to make Michael food that he would feel comfortable with and that was high in calories because he was still under weight for his age. Our Speech Therapist also told us that the muscles you speak with are the same you use to eat, so expect him to be a late talker. As time went on, the texture of the food had to change so that he could slowly adapt to solid food. It went on for about a year and a half. By the age of 2 1/2, we hit a wall with regard to his eating and speech.
One month before his third birthday, Michael began Speech Therapy and Feeding Therapy for a second time. It was here that we finally found out what the problem was with both his eating and speech. Michael was diagnosed with Apraxia of speech. The simplest way to explain it is that he had a motor control problem with the muscles in his mouth that control speech and eating. Michael has had intensive one on one speech therapy in and out of school for about 6 years now. The majority of his speech problems are in the past, except for a few articulation and pragmatic problems which are still lingering. He is now doing group speech in school to finish up the last of the articulation problems and focus on pragmatic speech to help Michael with his socialization issues.
We also learned that kids with Apraxia typically have developmental delays and learning disabilities, this proved true for Michael. By the age of 3 ½ years old, we realized that Michael had another obstacle that he needed to overcome. He could not grip a crayon or pencil like most children his age or manipulate things with his fingers very well. He was also very clumsy athletically and seemed weaker than most of the other children. This was the beginning of Occupational Therapy for Michael. Through intensive therapy, Michael has made huge strides. Although he is still behind in this area, Michael has found a sport that he loves. He has become an avid swimmer and takes swim lessons a couple times a week to master all the strokes. Even though he has found a sport he loves, Michael began adaptive PE this school year to help with his gross motor development.
In the Second Grade, Michael was diagnosed with a specific learning disability (SLD). As a result of this new diagnosis, his eligibility for services was switched from Speech and Language Development to SLD. Three separate evaluators came to the conclusion that Michael has an auditory processing disorder. We as parents, along with Michael’s teacher knew this was a problem as early as kindergarten. However, due to the lack of maturity in children, auditory processing is difficult to diagnose until they are in the 2nd grade. Michael’s difficulty with auditory processing was affecting his ability to access the school curriculum. He struggled with auditory questions as well as reading and math comprehension. He has been receiving intensive educational therapy and resource in school for six months now. The results have been amazing and they are teaching him the skills he needs to be successful in further education and in life. Michael’s struggles with auditory processing will always remain. He is a bright child who has an unbelievable memory. Once the information enters his brain, he always masters it.
Michael will most likely need accommodations and extra help during his entire educational career. The diagnosis of an SLD will give him the help he needs, and the ammunition we need as his advocate to continue to get those services.
Michael also has a behavior plan in place for off task behavior. As I have said, Michael is a happy child who never throws tantrums or causes fights and is typically the first person to console someone if they are crying. While dealing with his own difficulties, Michael has developed bad classroom work habits. If the work was to challenging, Michael would simply stop working on his assignment or ask a million questions until the answers were just given to him. The behavior plan rewards him for staying on task and trying to answer questions himself. The biggest obstacle Michael has had to overcome is finding a solution to a problem on his own, and not simply guessing what the answer is. Michael has improved tremendously in this area since he started going to the educational therapist and learning the skills he needed to be successful in school.
As a parent of a special education child there is no conclusion to our story. We know our journey continues so long as our son needs help to prepare him for an independent life. Who knows what the next challenge will be for Michael, but we know we will deal with it the same way we have in the past. We will fight for the services he will need to prepare him for a productive and self-sufficient life.
Our experiences with a child who requires special education services can help you navigate through the IEP process. We would like the opportunity to help your child benefit from early intervention just as our son has.
Dennise & Doug Goldberg