Hi, I'm just reading this post. I have a child with Sensory Issues and this sounds just like my Son. I would get over the labeling. I've been criticized for labeling, however I explained myself and I felt much better for it. A diagnosis or label, whatever you want to call it, does help everyone understand what is going on. That doesn't mean he/she is destine for life to continue down that road.
We've done ECI and our child only qualified for Fine Motor Delay and the Sensory Issues- main diagnosis from them is Developmental Delay. We had therapy from them, very good, however it was only behavior therapy. So, it was helping the behavior some but wasn't totally taking care of the problem.
We've been foster parents since 2003. We've used the Child Study Center for a foster child that had a form of Muscular Dystrophy. They were awesome! I can't say enough good things about that whole experience of practically living there 3 times a week! Our foster child had OT, PT and Speech therapy, all three services 3 times a week.
Naturally, after a great experience, we chose to deal with our Son with the Child Study Center in Fort Worth. They are off Lancaster Street. It is usually a 6 month waiting list. It is well worth the wait! You fill out a registration packet and they evaluate all your comments, concerns, issues,etc... They give you a letter explaining if you qualify or not and how long the waiting list is. Then you get a letter stating that you have an appointment for an evaluation by a Developmental Pediatrician. This is a specialist Dr. that does testing and can administer medication for your child as well. They tell you the results and go over questions you have. Our child was diagnosed with 3 things,-Conduct Disorder, Developmental Delay, Fine Motor Skill Delay, I'm going on my memory. I'm thinking that is all he was diagnosed with. However, Sensory Integration or Sensory Processing Disorder came up, it is not a Federally recognized disability and has no diagnosis code number or isn't recognized by the DSM Manual of Psychiatric Disorders.
We still struggle, however we've made some improvements with Parenting issues and our Son is getting better. It takes time and patience and can be very frustrating. He is in Occupational Therapy 2 times a week with Sante Pediatrics. The swinging and jumping and fine motor skills are what they really work on. If you can swing your child on a swing set or use a small trampoline to have your child jump on that would help. Going round in circles doing Ring around the Rosie would help.
Sounds like there is an issue with your child, however I'm not a Developmental Pediatrician, however I do see a lot of similariites.
Here's some issues with our child:
Hates loud noises-throws a major temper tantrum if it is a unusual sound or loud beeping sound
Doesn't like to be touched in upper body area much
Very sensitive to smells and talks about things that smell. Use to smell food before eating it.
Sensitive to cold food, coming right out of the refrigerator.
Having trouble asking for things, has trouble with communicating with adults and kids.
Very aggressive, instead of asking he's pushes other kids and hits. Just learned that he is starting to tell other kids not to hit him. Which is huge progress!
Gets frustrated when schedule is changed, big groups of people/loud noises. Runs around in circles a lot.
Doesn't like brushing teeth or going to the Dentist or having us brush his teeth.
Bites things, sucks his thumb, puts his finger in his mouth a lot.
Doesn't follow directions well, time out doesn't work for him.
doesn't like being picked up when he doesn't initiate or ask to be picked up.
Hope this helps. Feel free to email me and I'll be glad to share my personal email address with you. I'd like to have some friends that I can talk to that truly understand what is going on. I explain so much to other people and very few people understand it-the sensory issues. We aren't getting support from family either. It is really rough!
Here's some great books: The Sensory-Sensitive Child and the Out of Sync Child. I like the The Sensory-Sensitive Child best, both are great. I'm finding keeping a daily diary is helpful to track your progress and help you understand more fully what is going on with your child and their wacky/crazy behavior at times!
Also for evaluations if you prefer to go to a Child Psychologist, you can also get a diagnosis and tested there. If you need names, let me know we know of several. We did that a lot with the Foster Kids. Did you ever hear back from the Neurologist? I'm curious what their input is on this?
Therapy- We've used Child Study Center (run by Cooks Hospital)
Sante Pediatrics
Therapy 2000
There are others in the phone books, however the others wouldn't take our insurance or didn't have openings and had long lists. Cook's Hospital is great, however I called and they had a 6 month waiting list.
I've found out this is genetic, my husband is delayed and his Father has communication issues/Auditory Asphasia and a Grandmother and Uncle had Sensory Issues, possibly PDD/Asperger's. I find it fascinating and I'm wanting to read all the information I can get my hands on.
Wanting to join a support group, so I'm thinking going to an Autism (as Sensory Issues are under Autism) or a support group for Mom thru the school system called Parents as Teachers. I just need to talk more with others that has similiar issues! Currently, I only know one person at our church and she has 4 kids!
I hope this helps and let me know how the Neurologist went, that is one Dr. we haven't gone to yet. The Child Study Center didn't mention it to us. They recommended play therapy, therapy for us as a parents, gave us lots of literature. We go back in one year for a re-evaluation. We can give him medication for his behavior-aggression if needed, however we are choosing to use that as a last resort.
