Updates

OK- so I haven't gotten around to posting pics yet. I'm kinda slow. Last week was hard for us. After the aptmt with the neurologist we went and saw the DAN doctor. What a waste of time!! She told us she has a waiting list and that she couldn't help us. She recommended the diet (glutein and cassein free). Some of the research we have read says that it helps to regain a child's attention and their level of awareness. Andrew has been on it for several days. He has been really irritable and cried a lot. It reminds me of someone going on the South Beach diet or Atkins diet and the pain they first experience. He is now getting occupational therapy, which I am not to sure about. Why am I so skeptical of people trying to help us? I just don't understand why they think that the Greenspan theory, or Floor time model, works. It's a child centered approach where they follow the childs lead in therapy. Whatever he does the engage in the same activities. Sounds great but I did this in grad school with autistic kiddos and it didn't do much for them. Let's face it- the whole world doesn't revolve around Andrew and we don't need to start acting like it. I'm looking into ABA (applied behavioral Analysis), the research is much better with this and discrete trial training than the Floor Time Model. I don't know, it's all pretty overwhelming. I make calls, leave messages, check the mail, and wait for people to respond so that we can get him into the right programs and therapy. The other night we noticed that he seemed to drift off more to his own world and we couldn't get his attention. Sometimes we feel like we are losing the real him, and it's heartbreaking. I really feel like this is a disease and not a disorder almost like Alzheimers. It just takes over their whole body. I am hopeful because he is still so young but it is very hard when you see constant regression. We will always fight for Andrew and we want nothing but the best for him. Please keep him in your prayers.

Andrew went to daycare today. I'm not sure how things went but when I picked him up the other kids were all acting like big people and trying to help Andrew play with toys. It was kinda cute and they are all precious. I know there will be a day when the kids at school won't be this sweet, but for now it is cute. His teacher said that he did not take a nap. Yikes!!! Let's hope he can transition better tommorrow.

My first day was ok. The staff at my school are great. They are all very family oriented and I am really starting to love the SA culture here- everyone hugging to greet each other. The best part of my job- I get to leave at 3:00- YEA!!! That has never been the case at any of the 6 schools I have worked at. I'm just not sure that I will make it at 7:30 every morning. Let's hope the slow paced culture of SA will generalize to morning time at school. Right?

Tonight has been crazy at our house. It all started when I was watching Super Nanny and I heard a noise coming from the laundry room. The dog ran to the door and it sounded like an animal. Felt went into the garage and found a racoon. UUGHH! Gross! He said he tried to get it leave, but since we have so much crap in the garage it wondered around in our stuff. He placed our trashcans in the drive hoping to get it to leave but I'm not sure that worked. This would be the time when we need a gun, but we still live in the city limits. I am so grossed out by this that I would rather not go in the garage or laundry room for a year or more. Am I crazy?

Not a good day

It has been a while since the last post. We have been busy setting up the house, unpacking boxes and trying to schedule therapies. What a mess! Most of the mess (boxes) were sold to a guy in town for fifty dollars. We are really enjoying the house. It is so nice to have people over and have room for them to sit down and talk. After crying three days from being disoriented Andrew is now enjoying it too. He loves going in and out of rooms and attacking our Maddie dog. Too bad we sold the bubble wrap because he really loved swinging that around and knocking things over.

Today was not the best of days. Andrew had an appointment with a nuerologist here in town to talk about developmental problems. Dr. Rotenberg was very nice but very frank and after going over case history and observing him he listed or coded Andrew as PDD (Pervasive Developmental Disorder) otherwise known as Autism. This was really hard for me to take. My dad came along to help with the aptmt and didn't seem quite as upset as I was. We all knew that things were leading up to this diagnosis but it is still so heartbreaking and seems so permanent. It's not like he is dying but I am really grieving the loss of a normal childhood for him. For a long time I was holding out hope that this was just Sensory Integration Disorder, or Developmental Delay and not truly Autism. I can remember back to my first couple of years of working with students with Autism and saying to my self 'God please don't ever let that be me, and please don't give me a child with this'. And he has, and I am angry about it. I'm past the denial stage and definitely in the anger stage. Why me, Why us? What did we do to deserve this? And why is it that 1 child in every 150 children has Autism, an epidemic but yet we have no real answers as to what is causing this.??? Any way, we have follow up appointments for an EEG and sleep study, and after that he will go back for Autsim rating scale to look at severity and other issues.

Yesterday I had to go the obgyn doctor for an annual visit. It made me soo sick to my stomach to see all the expecting moms and dads sit in the waiting area. I remember how special a time it was for us as we waited too and dreamed about our baby's life. I sat looking at these expecting parents feeling jealous that we were not somehow stagnate in that stage. I hope and pray that none of those people have to go through what we are going through. Things just feel shattered.

I am very worried about next week. Andrew will be fulltime in day care again and I know he will stick out and defninitely be the high maintenance kid. What am I going to do? I can't really tell them 'he is PDD' but then again they can't discriminate can they?

After seeing the doctor today the nurse looked at me and said 'have a nice day.' I thought to myself a nice day? - this a bad day.

Please pray for us.

One more thing...

With all of the good things happening I forgot to mention that we are down to one car. My car has decided to shake so bad that you can barely drive it. What fun! If anyone knows of a good mechanic down here please let us know. Felt just loves being driven to and from work.

Moving Day

Lots of exciting things have been happening around here. Last week Andrew received a comprehensive evaluation from Easter Seals the Early Childhood Intervention. It was determined that he would receive 2hours and 15 minutes a week of therapy from them in the home or daycare center. He will get 45minutes of speech therapy and 45 minutes of occupational therapy and 45minutes with a developmental teacher. Isn't that great? I was so pleased with them and his teacher Ms. Jackie has already come out this week to work with him. He had a great time with her and she was very sweet at offering suggestions to work on sensory needs. He will continue to get 2 hours a week of Vital Stim therapy/Speech therapy at HealthSouthRIOSA until I go back to work. Lots of work for the little man! He has an appointment next week with a DAN (Defeat Autism Now) doctor to look at a Cassein and Gluetin free diet. Although it might really help with his development it will not be fun trying to make two different meals at dinner time.

We closed on our house Wednesday and I just picked up the keys an hour ago from the realtor. I found out from our moving company that tommorrow is the big day for delivery. We finally have a house again. !!!!! Super exciting!! Andrew has already enjoyed running around and climbing on the fireplace and falling ofcourse.

Although we are super excited, we are a bit sad not to be living with my brother and sister-in-law. We have had fun and have really enjoyed getting to bond with our adorable nephew. What a blessing family is! I promise to put pictures up soon and will email out our new address.