LABELS!

We live a life in which we are all labeled at one point or another. When we are born, we are labeled as a boy or a girl. We are labeled by our race, hair color, eye color and how big we are and all of this happens on the day we are born. There are many other labels that come later. Some of them are nice to have. Labels that tell us how smart we are or that we are loved by somone. However, many labels that are given to children in school are usually not fun labels. Many of them are generic labels that are used on MANY children. Then there are the labels used in special education and medical professionals.

Elijah was labeled as a premature baby on the day he was born. He then received the label as a child with a hearing loss when he was five weeks old. This was confirmed four weeks later. He went home on oxygen and received the label as medically fragile having a reactive airway. Grant you, he was not as fragile as many children, but he certainly wasn't healthy.  These are the  labels he lived with for a long time. I like to remember that he was and still is a blue eyed red headed precious boy!

Elijah started school at the age of three with the label of auditorially impaired(AI) and wears cochlear implants. Auditorially Impaired is the Federal term used for a hearing imparied child. He started off as a total communication AI student and then later was labeled as an ORAL AI student. He was also a child with behavior issues and later earned the label of ADHD. He started medication and things were OK for about 18 months and then the tics started. At the age of eight he received the label of Tourette Syndrome and a few months later the label of OCD. These were given my medical professional and at school fall under OHI(Other Health Impaired). The school sent forms off to his doctors and one of them decided to put the label of Aspergers on the report. The school called me and DID NOT agree with this label at all and neither did I. I called the doctor and had it removed.

Elijah has lived with these labels most of his life and have overcome many obstacles. We are planning on taking him to a camp for kids with Tourette Syndrome in April. I completed the application and sent it off about two months ago. His doctors then needed to complete a medical form for all of his medications and I just recieved the form from his psychiatrist. All of his labels were listed along with PDD-NOS. This is an acronym for Pervasive Developmental Disorder that is non specific. Basically it is atypical autism. Well, here we go again. I looked up this disorder AGAIN and this is what I found.

As for the other PDD's, diagnosis of PDD-NOS requires the involvement of a team of specialists. The individual needs to undergo a full diagnostic evaluation, including a thorough medical, social, adaptive, motor skills and communication history. Other parts of an assessment can be behavioral rating scales, direct behavioral observations, psychological assessment, educational assessment, communication assessment, and occupational assessment.

I have to say I am more than just a bit irritated with his doctor. She sees him for 15 minutes every two to three months. A full diagnostic evaluation has never been done on him for PDD-NOS or any form of autism. Many hearing impaired children may show symptoms of autism as do some children with Tourette Syndrome. I don't believe hs is PDD-NOS and neither do the deaf educators who have worked with him for YEARS.  This is one label that I am not going to allow to be used with Elijah. Assumptions are made with labels, and he already has way TOO many and doesn't need another one. We go back to his doctor in May, and I guess she and I will need to talk.

Coincidence!

I stayed home with Elijah today to take him to the pulmanologist. He has had an awful cough for two weeks and we have tried breathing treatments and other meds. We stopped at Target on the way to buy some cat litter, it was on sale. I decided as we were walking in to get a vanilla latte at Starbucks. After I paid and as I turned around a woman said to me, "I think I know you. Was your son ever at Presby(Presbyterian Hospital) Dallas in the NICU. I looked at her and said, "Yes" as my brain tried to place her. She said, "I am a nurse there, my name is Jenna." Just as she said that my brain put it all together and I reached out and gave her a big hug as I said, "JENNA!!"

That is Jenna in the picture with Elijah on the day he came home from Presby. He was in the NICU for about 2 weeks and then in the special care nursery for another 2 1/2 weeks. Jenna was his nurse in the special care nursery during the day. She had him on pretty much every shift she worked. I have to say she was my favorite nurse during Elijah's entire stay int he hospital.

We sat and chatted right there in Target for about ten minutes. She thought she recognized me and then she saw Elijah with his red hair and his cochlear implants. We had seen her a few times at the NICU reunions that we had attended a few times in the first few years after he was born. She knew he had cochlear implants and remembered we lived in this area. She was amazed at how well he spoke and thought he looked great. I told her a little about his tourette syndrome, OCD and ADHD. She asked where he went to school and we talked about that for a minute. I explained we were on our way to the pulmanologist due to his cough. He really has been very healthy for the last two years! I also told her about this blog, so I am hoping she is reading it and catching up on him.

Seeing Jenna brought back so many memories. It is amazing that we ran into each other at all. I am usually at work during the time we were at Target and it would only be the summer when I might be in there on a weekday at that time. I usually go in on the electronics end of the store, but because we needed cat litter, I went in on the other end of the store. I remember seeing her as we walked in, so the timing on that is just amazing. I tend to think that we weren't meant to run into each other. I tend to think an angel pushed us both in the right direction to let us meet. I needed a real pick me up today and Jenna provided that. I hope she is reading this and knows what an angel she was when Elijah was under her care.