James' World

For the past two months our family has been dealing with some life changing events. We discussed for a while whether we would just keep it to ourselves, tell our immediate family, or share it with everyone. We came to the conclusion since this is such a big part of our lives, and we would probably be posting things in future blog posts, that when we found out for sure what was going on, we would just do a blog post about it so everyone would know and we didn't feel like we had this big secret we were trying to keep from everyone. So what is our life changing news? James has been diagnosed with Autism. Wow, that was a lot harder to type then I thought it would be. Maybe doing this will be a little therapeutic for me.

This may get a little long, so if you are not really interested in reading the rest, don't worry, I am not going to be offended. About two months ago James' nursery leader pulled me aside when I dropped him off. She started asking me if we had him in preschool or anything. Then she reluctantly started telling me about her grandson who had an Autism Spectrum Disorder(ASD) and said she noticed a lot of the same things in James. I was pretty caught off guard by this, but didn't doubt what she had said. We had always joked about James' "Autism" his whole life, but I never actually thought there was any truth about it, he just did a few things that were a little autistic. I had read things and thought that it just didn't entirely fit. I shared the information with Doug and we decided to have his 3 year check up about a month early. The next few days were so hard for me, just thinking and worrying. On the morning of the appointment the doctor called in sick! Great, another day of worrying. But it actually turned out perfect, the extra day actually gave me a chance to calm down and be less emotional. As it turned out the Doctor was home sick and decided to read up on Autism because he had a parent in asking questions that he didn't know much about, so it was fresh on his mind.

We told the doctor all our concerns about James as well as what we had heard from others. Our biggest concern was James' speech delay. James talks, but about 95% of what he says is just repeating things he had heard. I learned this is called echolalia and it is a symptom of Autism. The doctor said he would be surprised if James did not have Autism and referred us to several specialists, a hearing screening to rule out hearing loss, a speech therapist, and a Neuropsychologist to get a diagnosis. We had the hearing test, it came back normal just like we thought it would. We set up appointments with the Neuropsychologist, it took a month just to get the appointments set up.

Meanwhile I contacted the school district to try and get things going there. Because the school year is basically over, I met with all of the specialists for the school, they did their evaluations and we wrote James' IEP for him to start preschool in the fall. Overall this process has been slow and frustrating. We just want to know answers and how to help James and it just seemed to take so long.

We finally met with the Neuropsychologist and she asked us questions about James, observed him a little and gave us several evaluations to fill out. She explained her feelings that Autism is over-diagnosed and she would probably give James a diagnosis of PDD-NOS. That sounded good to us, we knew he wasn't severely autistic. A few days later we went in for what was supposed to be several hours of evaluation. James was having a bad day and demonstrated most of his autistic behavior. He wouldn't do anything asked of him and had several meltdowns. So after 45 minutes they told us they had enough information and we could go. As the technician described James as, "being in his own world." a statement I have made several times.

Two weeks later we went in for the official diagnosis: Autism. It was a little hard to hear because we were expecting something less, but at least we are on the right track to getting James help. As she described it to me; it is like James is in a room with no doors, just windows. He can't get out so we need to show him the windows and help him get out of the room. She recommended Speech therapy, which James starts this week, Behavioral therapy, which we can only start if we can get on a Medicaid program, and Occupational therapy, which isn't as important, so we will see how the Medicaid program goes.

During the past two months I have learned so much about James, and things are making more sense. Some of these things are: I now understand why he says "ouch" whenever someone touches him, why he doesn't talk to people, and why he has a hard time interacting with peers. It helps to understand why he has so many tantrums and that time-out and other forms of discipline don't work for him. It is not just because we are bad parents. It makes more sense why he can quote an entire movie, but not answer a simple question of "What do you want for lunch". I also understand better why he wanders and doesn't have to be close to mom or dad, he also is fearless and puts himself in some dangerous situations because of it.

We know that James is going to have a very difficult time, and we are going to have a difficult time raising him. But we have hope that with the right kind of help and guidance from professionals from us he will be able to function normally someday.

I don't know why God decided to give us James, or why James needed to have this trial in his life. But I do know that this was God's will for James and for our family. It was not an accident or a result of anything we have done as parents. We love him so much and are so grateful to have him in our family.