The Search Continues...

Our little Noah is still without a diagnosis, we know Epilpesy is an umbrella diagnosis that categorizes his seizures but it does not explain the greater global delays he has. Like any parent would in this situation, I have been reading endlessly to find an explanation and it has only been in the last few weeks that I found something: Sensory Processing Disorder. What is Sensory Processing Disorder (SPD) you ask? It is a neurological and nervous system disorder where Noah needs a lot of sensory input to understand his surroundings. Put simply, it is why Noah had to throw himself on you, bang his head on the couch/table/floor/pillow/bed, cram everything into his mouth, and play in water/mud/barkdust/sand. SPD is often an issue for children with an Autism diagnosis. For children with Autism, SPD can manifest itself with being overly sensitive. Those are the children who can't stand to feel grass on their bare feet, the tag in their clothes drives them crazy, and certain food textures gag them.

Unfortunately, we know that these are not the full extent of Noah's issues. He has global delays, which means in every developmental category (cognitive, speech, gross motor, fine motor) he is significantly delayed. When assessed, Noah's skills are repeatedly found to be those of a 1 year old. Noah is no longer a baby, he is 4 years old next month. We don't have a name for what is going on with Noah. One doctor thought maybe Autism, but that hasn't been agreed upon with other doctors and just has never felt right to us. He is far too engaged with people, far too social.

Through our blog another family with a child very similar to Noah found us. Their son is 8 years old and still experiencing the same issues as Noah. Now, I am speaking for someone else so I may be misstating some information, but their son also has seizures and global delays that are extremely similar to Noah's. They also have been given the "maybe your son is Autistic but we just don't know" talk. There may some day be a disorder named after our boys, because so far, no one can tell us what our children have and what to expect.

We are doing everything we can think of to help Noah gain skills that will make his life and ours easier. Some days I feel like we see such immense progress. He has some ASL (American Sign Language) signs, we think he can say "DaDa" for Geoff and "down" and I'm pretty sure he yelled "up" at me the other day when he was mad. But these are word approximations that I don't know if others would hear. He is much better most of the time around other children. He seems to understand that they don't like to be hit or dived upon. But other days it still feels like we have so far to go: when he threw a french fry in some woman's hair at McDonald's, or when we had to leave a 4th of July party after 25 long minutes because between the fire pit, kiddie pool, dogs, associated dog poop, and men to wrestle with, we just couldn't get him calm enough or find a safe spot for him.

So, we are learning to navigate our way through the life of a parent of a special needs kid just as Noah is learning too. It is a precarious balance between living a "normal" life and trying to give both of our boys a lot of learning and fun experiences and not putting ourselves in situations that are extremely stressful and plain just not fun. Some times we have great successes and some times we have spectacular failures, but we can just keep trying and learning. As long as we can get through this with more smiles than tears, I think we are a success.

-Amy