Monday, July 19, 2010

Another hurdle

I have not been writing as much as I'd like. In fact, I haven't been writing at all. Hence the 3+ month hiatus I have taken from this blog. I am now ready to share with the world what I wasn't able to face.

In February, Jack stopped eating foods that he usually ate. Normally, this wouldn't be an issue with a kid, our taste buds change. But Jack is an EXTREMELY picky eater. He doesn't eat hamburger or other meat except chicken nuggets, and in February he decided he only ate chicken nuggets from McDonald's. He only ate yogurt and granola bars. For like 2 weeks. I picked him up one day, and noticed that he was lighter than I remembered. I weighed him and he had lost 2 lbs. That isn't a lot, but for a tall 5 year old who is already underweight, that is MAJOR. So I started scouring the internet for ways to deal with a picky eater, and found a website about Sensory Processing Disorder. I looked at the symptoms, and it was like reading Jack's life story.

Everything from being scared of public toilets flushing (in the beginning he would run and scream from the bathroom in terror) to screaming at the top of his lungs because he got a scrape on his knee. He is very uncoordinated, and appears very clumsy. He walks on his toes (even after have casts on his legs on two different occasions). He craves very sweet foods, and is EXTREMELY picky in what he eats.

I sat on the info for a few weeks, and prayed about it. I showed it to Daddyman, my mom and dad, and Daddyman's mom. Everyone was ho-hum about it, and like, "yeah, that sort of sounds like Jack." No one was as sure about it as I was, and that made me think that maybe I was over reacting. Finally, I got up the nerve to call the pediatrician to see if he could send us for a consult. I was lucky in that they had an opening that afternoon, and off we went. I took my paperwork with me, and showed it to the doctor. He looked over Jack a little, and did a neurological exam to ensure there wasn't something physically wrong with him. Then he left, saying he needed to go get someone smarter than him. A few minutes later, he walked in with his wife, who was the assistant to the Pitt County School psychologist. I told her briefly what I had told her husband, and she said that she would get us in as soon as she could. Within a couple of weeks, I had an appointment. No only was she the local school psychologist, but she was a professor at ECU. I figured we had a great person on our side, and I wasn't wrong.

In the initial meeting, I took Jack and Hemi, and she took some info from us. She got to see how Jack was unable to sit still for any length of time, and some of his peculiarities. She asked me what I wanted, and I said that I would like a comprehensive evaluation, just to see where we were. So, for several weeks, and a total of 8 hours, Jack was tested, and I filled out TONS of paperwork. Everything was asked from what my pregnancy was like to when he hit certain milestones. It was extremely hard to recall that information, especially when it was so long ago.

Finally, Daddyman and I were going for the official diagnosis. She went over the whole evaluation, point by point, and finally, at the end, we got the diagnosis:

Asperger's Syndrome

I was FLOORED. I was prepared for the SPD diagnosis, but not Asperger's. Asperger's is on the Autism Spectrum. My son couldn't POSSIBLY have an Autism disorder. I have grieved over this diagnosis. I know his prognosis is great, and that since we have caught it early, maybe we can correct some things, but there is no cure. I have also been a little embarassed. He doesn't do what other kids do, but now I realize that he CANNOT. Maybe in the future, he will be able to, but right now, he can't. The path I thought we were on is now flooded, and we have to find a new route. We don't know where we're going to end up. It might be in the same spot we thought 6 months ago, or it could be a completely different and maybe even better spot.

We have started Occupational Therapy as well as Behavior Therapy. The OT is GREAT! I am still on the fence about the Behavior therapist. Time will tell about that one.

Jack is supposed to start school in the fall, but since we don't know where we'll be in December/January, we are unsure if he will go this fall. We may wait until we move, and start him in Kindergarten there. He is extremely smart (his IQ is WAY high), and he placed out of most of the kindergarten material he was tested on. We don't think that he will miss much except for the socialization that he really needs. But he has a hard time transitioning into new activities, so we don't want to make things worse by putting him in school and then moving him mid-year. We are still on the fence about it.

We are learning what his sensory triggers are, and how to address them. I have a list a mile long on things he needs to make life easier for all of us. He is understimulated, and craves movement. He spins, dances, jumps, and bumps into things. He has meltdowns over things that seem small to us, but to him, they are major.

I have found some new friends online (and a few I hope to make real life friends) that have helped me along to this point. Some have just lent an ear to hear my vents, while others have offered suggestions and prayers. I am so glad to have these friends. Some of these friends have special needs kids, while some do not. I am grateful for all of them.

Alli C

3 comments:

  1. The diagnosis isn't easy on anyone emotionally that's for darn sure! The good news is that there is A LOT of help for the kiddos on the spectrum.

    My 3 year old was diagnosed in October as just being on the spectrum (PDD-NOS, I believe it was) and he has made great strides since then. As of right now we only have the diagnosis from our school psychologist (she couldn't say specifically where on the spectrum he is, just that he is on it) but will be going for a medical eval some time soon.

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  2. Ah, this is a rough thing to go through, I'm so sure. (I've never been there, but I've watched friends go through it...) Many thoughts and prayers are with you. Good for you for pursuing a diagnosis when you knew that something wasn't right. He's in great hands with you as a Mama.

    -@monsterchew

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  3. This is not easy, but you will learn how to work with him and he will learn new techniques to cope. You will all come a long way and you will be amazed when you think, "Wait! He didn't do that before! Yay!!" There will be ups and downs, but when it's all said and done, my friend, God gave you this beautiful little boy. I know that you have what it takes to be the most amazing Mama for Jack. It is a scary diagnosis, but remember II Timothy 1:7 - For God hath not given us the spirit of fear, but of power, love, and sound mind. You can do this, sweet friend!

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