Friday, February 5, 2010

A New Kind of "Normal"

I am taking my time writing this post. Ethically speaking, I have debated about whether or not I should even write it at all. One reason being that I don't want to prematurely label my son, but the biggest reason being that I don't want others to prematurely label him. I want to stress here the importance of remembering that nothing has been found for certain, and until next week testing for the most part needs to be considered as inconclusive yet needing more exploration.

Yet even though I felt so negatively about writing this post, I know there are other mothers out there who are going through this, who will go through this, or who have gone through this. I want to contribute to the community of families that are having this experience and offer support, and even hopefully gain support by doing so. Throughout our journey as parents, Daryl and I have hit a lot of really hard places. I think this is one of the toughest places to be in as a parent.

A few weeks ago, I posted about Jonah's screening with Early Interventions. The nurse concluded that he was delayed in several areas of development, and needed to be evaluated by a panel of specialists to see if the Early Interventions program could help him with these delays. At the evaluation, the panel consisted of an audiologist, a speech therapist, a developmental specialist, an occupational therapist, the director of Early Interventions, and the nurse who had done the initial screening.

They asked him to do several things. Point to his body parts, follow simple commands, react to different tones of voice, react to different facial expressions, and different motor skills. They also continued to ask me more questions than I can remember. The nurse brought a worksheet for me that asked different questions about Jonah. I had filled one out when she had done the initial screening, but she said this one was more in depth and they have seen some red flags for a pervasive developmental disorder. Many people do not know what this means, but having gone to school for cognitive psychology and taken several classes in cognitive assessment myself, I knew. They were softening the prospect of the diagnosis by calling it this long name. In short, PDD is a category of disorders that includes autism and autistic features. When someone speaks of "being on the spectrum" they are referring to the class of disorders that is PDD. The nurse didn't know that I know what PDD is. She didn't know that my heart fell to the floor. I filled out the worksheet, but could only fill out up to the 12 month mark. He could only be tested up to the twelve month level, because he will not be eighteen months until next week. They looked over the sheets, compared notes. I saw a lot of head nodding, a lot of concerned looks, and a lot of whispering. The nurse came back to me and told me that we should bring him back to complete the testing when he is eighteen months old. If they do it a day too early, then the test is invalid. She also explained to me that there is an autism and PDD specialist that comes to their center every month from Columbus, and they will most likely recommend that I bring Jonah in to see him.

She said if Jonah does have a form of PDD, it is PDD Not Otherwise Specified (PDD-NOS.) This means that a child shows some similarities to a child who has autism, but is more social and has the cognitive capacity to process certain situations that a child who has autism may not. Children with PDD-NOS often do not use language very well, and seem to lose certain language skills over the course of their development. They might have problems with motor skills such as walking. But they are typically aware of their environment and respond to people who engage them. Jonah is a little confusing to the specialists, because while he does have some tendencies, he is also pretty social.

I have noted other signs with Jonah, such as repetetive actions, sometimes seeming like he has a hearing problem, waving and using other gestures inappropriately. While it is normal for a child to throw objects, Jonah does it to an excess, as if it were an impulse.

I may be paranoid now, noting every little thing that could point to PDD-NOS. But really I am just a worried mother, who wants her little boy to have the best chance at being happy and healthy. I am very upset by the thought that he will have to go through this testing. I know that there are a lot of people who like drama and attention, and they *want* something to always be wrong. I am hoping with all of my heart that we go in for this testing and PDD-NOS is ruled out, or any other diagnosis that falls under PDD. But it is still a process that we are going through at this time, and it is weighing very heavily on our family. If we have him tested and it turns out that there is something wrong, we can get him the proper therapies that he needs now to avoid further delays and other problems. At the same time, we feel like terrible parents for even thinking that our child is autistic or has autistic tendencies. I used to wonder how parents could ignore things that were so obviously wrong with their child, but now as a parent I can see how that is an appealing option. To just say "it will come, he'll do it when he's ready." I want to be sitting here right now, writing a post about how normal Jonah is. But the truth of the matter is that he isn't normal. Even strangers notice that he isn't normal.

In the end, however, no matter what the testing shows, we know that he is normal for Jonah. We will most likely need to make some adjustments in our lives, no matter what we find from these tests. But we cannot compare Jonah's "normal" to another eighteen month olds' "normal." I was pretty much told by the team that we will be back to the centers for therapies. Most likely speech therapy and occupational therapy for his walking. While this may not be another eighteen month olds' normal, it is certainly going to become ours, and we will embrace it along with everything else that we have encountered on our journey down the path of parenthood.

No comments:

Post a Comment