Sunday, January 16, 2011

Childhood Apraxia & Sensory Processing Disorder

We had our parent meeting with the pediatrician's last week. We finally got some answers. Mason has been diagnosed with Childhood apraxia and Sensory Processing Disorder or SPD. And because of these two diagnosis he also has Delayed Milestones. Pretty big words for such a little guy.

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.

So that's a lot of information huh? Brent and I are still trying to wrap our heads around it all. We have already gone through the feeling guilty phase and asking our self's what we could have done differently. But we now know it's nothing we did it's just how God made Mason. And I am honestly OK with that! He is an amazing little boy who is so fun and sweet natured. I can not wait to see what he is going to do next!
We are now trying to get the insurance company to work with us and cover Mason's treatment. Also I am so excited to share with you all that we will be organizing the first annual "Mason's Walk" this fall in honor of our sweet boy and to raise awareness and research funding for Childhood Apraxia. (more details on that and how you can help if you are interested.)

2 comments:

Stephie Z said...

I am so glad y'all know what you are dealing with in order to get him the help he needs. You are a fabulous mother and with time and work he will defeat all of this. You are in my thoughts and I wish y'all the best.

Anonymous said...

It is good to know that there are others out there with the same issues. I am a single mom and my son Dalton is 16 months. He was just diagnosed with both SPD and Apraxia. Thank you for sharing your story. It gives me hope for my son.