Mason's Story of Childhood Apraxia

I guess I should just start from the beginning. I had such a wonderful pregnancy with Mason. He was born healthy and beautiful I might add :) He was developing great. Then one day I noticed that he didn't babble like a normal baby. I brushed it off because he was developing with his motor skills like crazy. By 9 months he still wasn't babbling or really make any noises besides giggling and crying. I talked to the pediatricians and they said he was fine and that we shouldn't worry. At age 1 he still was not saying anything not even Mamma or Dadda. Again I talked to the peds and they said not to worry. At 18 months we were in the same boat. I also started noticing that he was very sensitive to sounds and also sensitive to things he touched like different textures. I talked to the peds and they again said he was fine we needed to wait to do anything. So at 2 I had decided enough was enough. I knew in my gut something was up so I told the pediatrician's I wanted to get a second opinion. They sent me to our local Help Me Grow program and the speech pathologist and Occupational therapist evaluated Mason. They decided it was a good idea if we started Mason in speech therapy right away. They also noticed how sensitive he was to sounds and touching things. So he also started therapy for a Sensitivity Disorder. He has been in therapy for about a year and we really had no progress. The only things he was saying was "mamma", "bubble" and "woowoo" which is a little dog he sleeps with. He started doing a little better with the sensitivity issues. What was strange is he wass not a typical 2nd child where Emily talks for him. He wants to talk so badly but just can't get it out. His frustration is so sad.
On a Friday morning in September I went up stairs to get Emily some socks before pre-school and I peeked in Mason's room to check on him because I thought he was still sleeping. When I looked in he was laying flat on his back violently shaking from head to toe and his eyes were rolling in the back of his head. After about a minute he stop and his eyes kind of glazed over. I picked him up and took hip downstairs. I called the peds and they said it sounded like a a seizure. SCARY! They made him and appointment right away. When I took him in the doctor they said with his other issues they think our best option was to send him up the Rainbow Babies Children's Hospital in Cleveland. Finally we were going to get some answers for my sweet boy!
So on September 30th at 7am we packed Mason up and headed up to Cleveland. The hospital was great! Very kid friendly right off the bat. His first appointment was an EEG. An electroencephalogram (EEG) is a test that measures and records the electrical activity of your brain. Since they think he had a seizure they did this test. It was sad to watch them do it. It wasn't invasive or anything but it was traumatic for a 2 1/2 year old. He was a big boy and did great up until the very end. We were in the procedure room for about 2 hours. After that we headed to the atrium to get some lunch. He got to play and burn off some energy. After lunch we went to see the pediatric neurologist. She was great! We got the results from the EEG and they were normal. Which was good. She did not diagnose him with epilepsy. She said it may have been a one time thing which is actually normal. But if he has another episode then they will consider starting him on some medication. She started talking to us more about his other issues. They ruled out autism. She is leaning towards something called Childhood apraxia of speech. CAS is a motor speech disorder. She was also concerned about a possible tumor so he had a MRI the following week. Priase God that came back normai. She suggested we see a Developmental Pediatrican. After a 3 week clinical trial we finally got a diagnosis. Mason was diagnosed with Childhood Apraxia and Sensory Processing disorder. Here is an overview of each disability:

Children with Childhood Apraxia have problems saying sounds, syllables, and words. This is not because of muscle weakness or paralysis. The brain has problems planning to move the body parts (e.g., lips, jaw, tongue) needed for speech. The child knows what he or she wants to say, but his/her brain has difficulty coordinating the muscle movements necessary to say those words. Can you even imagine being trapped in your own body not being able say what you want or not being able to or tell someone when you are sad or hurt. It's so heartbreaking to watch him try and speak and not be able to. Research shows the children with CAS have more success when they receive frequent (3-5 times per week) and intensive treatment. We have also been teaching Mason sign language since he was about 18 months so that he can at least communicate with us his basic needs. One of the most important things for us and our family to remember is that treatment of apraxia of speech takes time and commitment. Children with CAS need a supportive environment that helps them feel successful with communication.

Sensory Processing Disorder (SPD, formerly known as "sensory integration dysfunction") is a condition that exists when sensory signals don't get organized into appropriate responses. Pioneering occupational therapist and neuroscientist A. Jean Ayres, PhD, likened SPD to a neurological "traffic jam" that prevents certain parts of the brain from receiving the information needed to interpret sensory information correctly. A person with SPD finds it difficult to process and act upon information received through the senses, which creates challenges in performing countless everyday tasks. Most children with Sensory Processing Disorder (SPD) are just as intelligent as their peers. Many are intellectually gifted. Their brains are simply wired differently. They need to be taught in ways that are adapted to how they process information, and they need leisure activities that suit their own sensory processing needs. Occupational therapy with a sensory integration approach typically takes place in a sensory-rich environment sometimes called the "OT gym." During OT sessions, the therapist guides the child through fun activities that are subtly structured so the child is constantly challenged but always successful. The goal of Occupational Therapy is to foster appropriate responses to sensation in an active, meaningful, and fun way so the child is able to behave in a more functional manner. Over time, the appropriate responses generalize to the environment beyond the clinic including home, school, and the larger community. Effective occupational therapy thus enables children with SPD to take part in the normal activities of childhood, such as playing with friends, enjoying school, eating, dressing, and sleeping. Treatment for Sensory Processing Disorder helps parents and others who live and work with sensational children to understand that Sensory Processing Disorder is real, even though it is "hidden." With this assurance, they become better advocates for their child at school and within the community.

Mason is in intense speech therapy and sees a SLP twice a week. He also sees a Occupational Therapsit once a week. We are starting to see some progress.

Mason's family and friends have grown to understand his facial and body language. And yet, Mason is still frustrated as he gets older and has more to say. Imagine being told your three year old may never speak well enough for others to understand. Or even worse, imagine being a three year old with so much to say but one to understand you. My husband, Brent, and I, along with our family, are not ever going to stop raising awareness for Childhood Apraxia of Speech. Mason has a long journey ahead of him but I am so proud to be his mom and be by his side every single step of the way!

In honor of Mason will be holding "Mason's Walk- A 5k for Children With Childhood Apraxia" on September 25th 2011. For more information you can visit htt://www.apraxia-kids.org/clevelandwalk