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So much has happened in the past few months. But before we get to that, you must have some background story of how we got here.

My oldest was born early, at 33 weeks, and has a condition called Childhood Apraxia of Speech. “Apraxia is a motor speech disorder that makes it hard for children to speak. It can take a lot of work to learn to say sounds and words better” from American Speech Language Association.

He’s now nine years old and has come a long way, but our journey is far from over. CAS is a motor planning disorder where he has difficulty not only in speech, but also can affect gross motor and fine motor skills.

Gage at 18 months

  • He said his first word at 18 months.
  • He took his first step at 22 months.
  • He was finally potty trained at age 4.

At age one, our pediatrician noticed he wasn’t talking or making much noise and referred us to our early intervention services, Help Me Grow. Early intervention is a statewide system that provides coordinated services to parents of infants and toddlers with disabilities. Check your state for something similar.

After several evaluations, we began working with EI and Stark County MRDD, in our home. We continued working with them until the maximum age of three, from there they refer to the public school system.

At three, he was put on an IEP (individual education plan), with our local school system. At that time, public school seemed like the best choice – where they would provide services of speech and occupational, and eventually physical therapies.

He loved school and we were happy with the progress he was making.

In the first grade, I started to recognize some signs of him struggling to read. He was transposing his numbers, he was really having difficulty reading and writing and started to dislike his bedtime stories (we had been doing since he was 6 months old). Despite my many attempts to talk to the school, it seemed like my concerns were dismissed. At the end of first grade, I emailed my concerns to the elementary principal, stating I wasn’t sure that he was ready for 2nd grade. She replied back that that was the schools job to determine and I was not to worry.

Our first parent-teacher conference, last year was very concerning. He was, now, in the third grade; yet, he was only reading at a kindergarten and first grade level. Despite being on an IEP, his teacher insisted he MUST pass the Ohio standarized tests or else he would repeat the 3rd grade.

I’ve never missed a single IEP meeting and I still had no clue how to help my little guy. After 8 years, several speech therapists, working with the school and a trip to Akron Children’s Neurology department, I was frustrated and had zero diagnosis.

I found an outside agency that would evaluate him, for dyslexia and any other learning disabilities and possibly give me some better answers as to how I can help him. After several evaluations, from him, and getting input from both his parents and several teachers that were familiar with him, we did get a diagnosis of intellectual disability. He tested with a lower IQ than most. The psychologist that did the testing explained that  it’s going to take him longer to master certain things, than most kids, which is why he believed he was late talking, walking, potty training, and everything in between.

Since he takes longer to process information, the psychologist also stated he would need an average of two years to master the same information that most kids learn in one. He gave us some recommendations on how we could better accommodate Gage in the home and how the school could better accommodate him in the classroom.

 

  1. He would need to have instructions broken down into bite size pieces. (He does have an early intervention specialist and small group time for this)
  2. He would need a lot of visual manipulatives to help him master reading, writing and math.
  3. It is recommended he be in a smaller classroom, made up of his peers.
  4. Gage needs to feel like he is making progress and not feel like he is behind everyone else.
  5. He should not be held to the same standard as the rest of the class – ie. required to pass the standarized testing.

 

 

Check back for details on what’s next for Gage and our family

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