A Second Opinion

Well, today we went to the Early Steps Clinic Evaluation. That was my way of getting a 2nd opinion on the diagnosis that we received. It was confirmed that Hayden has Sensory Integration Dysfunction (aka Sensory Processing Disorder) and Tactile Defensiveness. The developmental pediatrician that was in the meeting prescribed him Melatonin for his sleep issues. We start that tonight. It amazes me that even though I have complained about his weird sleep (or lack there of) patterns for the last 2 1/2 years that just now are we getting ANY kind of suggestion as to how to help him.

The child psychologist that was there was just stumped ... said so himself. He couldn't believe how busy Hayden was. I think Hayden wore him out ... hehe! I am happy with the end results and I don't feel like I have settled, mostly because I pursued a second opinion and spoke with a CARD representative at length.

Now, the next step is to get him into the correct therapy regimin and pattern. I haven't heard from the school yet, so I will be calling them tomorrow. I am anxious to meet his therapists and teachers and get insight into what kind of transition period we are looking at. We have adapted our home to him, so school will be a huge change. I will keep the blog updated as we go along.

A Making In Progress ...

So, I found the most fantastic lady to make Hayden's weighted vest and weighted blanket. I am so very excited abou it. His vest is camoflouge and will be ready first thing in the morning and at that time I will be dropping off the rest of the fabric and PVC pellets for the blanket which should be done by the end of the week. It will be a Thomas the Train pattern. He's gonna love it! The lady that is making it is disabled and her name is Diane. She is so sweet and even customized Hayden's vest by embroidering (sp?) his name in the back. It's adorable! The vest is 4 pounds and the blanket will be 8 pounds.

Poor Hayden has an ear infection so I have to cut this short as he is crying for me. I will write more and include pictures maybe tomorrow! :0)

Help!

No, don't help me - Hayden learned the sign today ... finally! He has been working on it for a while and would do it with some prompting, but earlier he just came up to me and did the sign. I asked him what he needed help with and he took my hand and brought me to the bucket under his table. I pulled it out and he reached up, put his arms around my neck and gave me the hugest hug! I cried! I was so very happy! He was able to communicate with me exactly what he needed and wanted for the first time ever! I am filled with joy right now and he was too! You could see it! :0)

Flapping!

So, for the last few weeks, Hayden has added new quirks to his list at a rate of about one per week. Last week was tongue scratching, this week ... flapping. Not just any flapping, the classic "W-form" autistic arm flapping. He does it when he gets excited. Like, today I was blow-drying my hair and I played with him blowing the warm air on his hair as he ran by and he was flapping so much I thought he was going to fly away.

The flapping saddens me so much that I want to cry. We aren't around any kids who do it for him to have picked it up, so it has to mean something. The thing is, the only thing really related to that flapping is "autism" itself. Ugh! Just seems like I can't get ahead no matter how hard I try with him. Poor baby! I just want to know how to help him!

ABA Therapy ... ?

So, I got a call this morning from Hayden's Early Steps Coordinator (M.M.). She gave me the email address to a certified ABA Therapist in town. I'm not exactly sure what ABA Therapy is and can't find any concrete information about it on-line, but it is somewhat pricey. It seems that unless you are military and have Tricare your insurance doesn't cover the therapy and you have to pay out of pocket. We will see. I may pay for a few sessions (at $45/hr) and see how it goes and if nothing terminate the service, still not sure. That's a lot of money in the great scheme of things. It would be helpful if I knew somebody who had been to ABA therapy with their child. It scares me that it is 100% linked with Autism and not really anything else ... well, other pervasive disorders, but not what Hayden has. I really need to just meet with this therapist and see. Her email back to me was very vague. Here's to skeptism and hoping (I guess).

Good News

So, today I spoke with Hayden's Early Steps coordinator about him going in front of the developmental board for a full evaluation and they gave me the green light. Hayden gets dropped by them on Aug 22, but they are keeping his case open until Aug 26 so that he can go through the testing. I am so happy! He will be seen by a child psychologist, a develpmental delay pediatrician, a behavioral specialist, a speech therapist, and an occupational therapist. This is monumental because it could mean some special funding for him to get certain types of therapies not offered to the normal child. It just so happens it is on the second day of school so he may be happy about that. I have a sneaky feeling he won't like being away from me for the first month or so.

We are also getting a CARD assessment done since the neurologist we seen (who is new to the area) didn't offer any suggestions or testing for him after saying Hayden didn't have Autism. Well, I agree that Hayden has tendancies, but is not autistic. If you read about Sensory processing disorder and tactile defensiveness all of the "tendancies" of autism are listed as normal behaviors for children with SPD and Tactile Defensiveness. We will see what comes of it. I am just so excited to actually have gotten in front of this board of specialists with him. They only see 3 children a month and not every child gets a green light to go to the meeting/evaluation. I am jumping for joy! Something good just has to come of this!

Getting Started

So, I decided to start a blog to maybe provide some insight to Hayden's disorder. I guess I also needed a place to pour my thoughts about SPD and how it changes every day. It amazes me that we started this journey nearly three years ago with a 1 pound child and now we have a 32 pound 40 inch toddler who will soon be starting developmental pre-k 3. Time flies.

So, I guess today was a monumental day for us with Occupational therapy because Hayden actually allowed J. J. (his therapist) to place headphones on him or several seconds at a time without flipping out and tonight he is wearing one of the last pairs of pajamas that we own with feet and long sleeves. He hates clothes to go below his knees or elbows. He usually claws himself until I cut them for him to wear them the way he likes them. We are doing good tonight though. I'm proud of him. He also allowed me to brush his hair without attacking me. He makes the funniest faces when you rub his head and I always have to wonder if it has to do with NICU and all the IV's he had in his head. Who knows.

I guess I could start with a list of dislikes and quirks for those of you who do not know Hayden.

Hayden will not let you brush his hair or teeth ...does not cry when he gets shots ... does not like to wear socks or shoes - they come off at least 40 times a trip to anywhere ... only eats a handful of foods and will gag and projectile vomit if he gets something in his mouth that does not feel/taste right to him ... humms all the time (so annoying) ... self-injures by hitting, slapping, biting, or clawing himself ... rams his head into walls, doors, the floor or anything else he can find that is hard ... does not like his hands, arms, or face to get dirty ... just started playing with play-doh and finger paint (used to hold his breath and pass out) ... lines objects up facing a certain direction with a cetain amount of space between them ... picks bumps/scabs/sores on himself or anyone else ... points out labels on tv or in books ... hugs backwards ... has severe seperation anxiety from me even with common people like his dad ... does not tolerate any type of hat on his head ... scratches his tongue ... and sniffs random things.

These are just what I can remember right now. It's nice to see it in list form. Never took the time to actually write it down like that. Hope that gives some insight into my daily frusterations.