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.

Resources- YEA!!

After a relaxing weekend in Carlsbad we are back to some craziness. The appraisal on our house was completed this morning and we hope to close on it by the end of the month. Although we feel very comfortable at our brother and sister-in-law's house, it will be nice to have our own space again and have our Maddie dog back.

I contacted a parent of a student that I had worked with years ago in Mesquite. I was hoping she could be a go to person for help with resources for Andrew. She and I talked for about an hour today and I can say that she is an answer to many prayers. She sent me a list of resources in San Antonio and was very comforting to talk to. She can definitely relate to what we are going through and is pointing me in the right direction of where to start with therapies and doctors. After talking to her and reading lots of info online I am wondering if we are heading towards a diagnosis of Autism. You would think that after all these years of working with children that I would know if Andrew had this disability. It is very different being his Mom and it's even harder to work with him doing speech and non-speech tasks that I would do in therapy. Through one of the resources that Carol gave us I was able to contact Respite Care about possible day care. I'm not sure but I think the center is located downtown so that might not work out best for us but I am feeling more confident that we will find someone or someplace that will watch him while we are at work.

July 20, 2007

Wednesday was our 4 year anniversary. YEA!! Both of us feel like it has been a lot longer. We celebrated by having dinner at the Grey Moss Inn, a quaint little restaurant located in Grey Moss, TX, just outside SA. It is on a scenic drive in the country and the food was very good. Felt said it reminded him of the Cotswald in the UK. If you ever come this way you should definitely check it out. www.grey-moss-inn.com

Some people have asked why we moved to SA and what we are actually doing here. We moved here for family and jobs. Andrew was pretty sick this past year and we knew that we needed help and a support system. Our family has tried to help us out as much as possible in Dallas but it makes it easier with everyone being here. We are enjoying getting to see our nephew- Jackson and spend more time with all the other family and extended family. Felt works for Southwest Research Institute as a research Engineer in the automotive devision and I will be working for Northside ISD as a speech therapist.

With all the traveling and moving this summer we are in for 2 more trips. The first will be this weekend to Carlsbad, NM for a friend's wedding and the second will be later to Red River, NM for family reunion. Well, gotta get packing- I can't forget the Elmo and Baby Einstein DVDs

We're Here

We have been in San Antonio for two weeks and are somewhat adjusting to life here. Our sweet brother and sister-in- law have given us space and time to get ourselves together and find a house. After looking at houses for over a week and letting Felt torment realtors with questions we have an offer on a house close to Sea World and hope to close in a couple of weeks. I am not crazy about the house but I think Felt is in love with it. It has 2600 square feet, a large deck in the backyard with a great view and a hot tub. Yea!!! It has lots of space for us and is in good shape for being a 20 year old home. It is also 10 minutes from both of our jobs! We are really excited about that.

Andrew has been going to series of apointments- therapy, evaluations, new doctors, etc. Lots of fun for him! He loves being the center of attention. We have him scheduled to see a neurologist in August and the earliest we could get him into a developmental pedi was in February- yes, Feb., can you believe that? There is such a need for help with kiddos like Andrew. We still have no answers as to why he has regressed in development. His latest speech eval here in town was definitely a hard one. The SLP (speech therapist) made comments like "he had to have been born with something, some condition" and "You haven't taken him to a neurologist before?" I left there feeling guilty and angry. She said a lot of things that I didn't want to hear but that needed to be said. Felt and I are both having a hard time dealing with all of this and the move. We feel frustrated and just heartbroken for Andrew. Although he is not in any physical pain we want the best for him and we want him to be able to play like other kids his age. It's just a hard time right now and it's hard to explain to other people. Even situations where Andrew gets excited and needs deep pressure and will come to someone grab their arm tightly and clench his teeth- it can be a pain trying to explain to each person why he is doing this.

Please pray for us this week. Pray for good and knowledgeable doctors and therapists to work with him, pray for peace with this situation, pray that the house will go through, and pray that God will provide financially for all of this (especially since insurance only covers 20 speech therapy sessions a year). Although I have not updated this blog since Thanksgiving I plan to be writing a lot more. Stay tuned and thanks for everyone's support.
Brandi