One more thing!

Just wanted to share that Andrew was on the 10 O'Clock news Sat. night on CBS- Austin. My parents and I took him to the Autism Walk at the Dell Diamond that morning and pulled him around in his red wagon. How could someone not put him on the news? He was too cute and enjoyed the country band that played there. It was really good to see other families, and get resources. Oh- and he got an autographed picture of a guy named Jessie that is on the show Friday Night Lights. Kinda cool!

Andrew at the birthday party enjoying all of the attention!

Roar!

Just had to include a picture of the awesome cake! Didn't I do a good job?

Andrew Turns 2

Andrew turned 2 Nov. the 2nd.. It was a special day for all of us but also hard as well. For so long I held on to the fact that he wasn't 2 yet, and that he would hopefully start to talk before he turned 2. When I sang happy birthday to him that morning he smiled and looked around very excited to see the house full of streamers and birthday banners. We had a small birthday party for him on Saturday with family and he seemed to enjoy the day especially the cake. I made him a chocolate gluten and cassen free cake with the encouragement of my mother-in-law and it actually turned out ok. After eating a whole piece Andrew could not go to sleep that night and woke up the next morning at five acting like he was on speed. It was really wild and definitely shows us that so much of what goes on with these kids depends on diet and nutrition. It was really nice to have family around to celebrate the day.

Andrew has been doing better with all of the therapy. He is starting to enjoy the brushing protocol that the occupational therapist recommended and is learning to request music by signing for Itunes. He now stands at the computer and trys to move the mouse to get music to play. Right now he is really into Jazz and loves the Sleepless in Seattle CD. I continue to enjoy meeting with other parents and talking to them at therapy. It is really comforting to hear their stories and gives me assurance that we are making the right choices.

We have lots of upcoming apptmts. Tommorrow he has an MRI early in the morning and on Friday we go to the Thoughtful House to meet with Dr. Jepson and Scott Allen (flying in from

California) who will also complete a diagnostic battery. It was hard to fill out 20 pages on behavior and developmental questions because so many of my answers were 'no he doesn't do that yet, but he did at one time.' Hard stuff to think about! We keep calling this our $1,000 dollar day because it will cost close to that. Please pray for us and pray that God will continue to provide financially for us. No, I am not asking anyone for money and we are not in need of any. We think that things will work out for us, but we can't imagine how parents with more than one child afford all of this. Please pray for Andrew that he will cooperate and that we will get our money's worth. We are excited and a little nervous and know that God continues to bless us in this situation. Sometimes I hear myself singing Kanye West's song "that-that don't kill me can only make me stronger." Crazy I know because I can not stand Kanye after his whole George Bush hates black people statement. What a loser!

On another note Andrew is now having difficulty with sleeping. At daycare he doesn't nap anymore and laughs while running around the other children. At night he is waking up at 9:00 and laughing, flapping his arms and legs until after midnight to wake up at 5:30 the next morning doing the same thing. It frustrates me because nothing seems to calm his brain back down. I really wonder what is going on in there because he has been the best sleeper since he was 6 weeks old. I have never had problems with this before. It scares me in the sense that I'm afraid he will wake up fall off the bed and hurt himself while we are asleep. Better get those baby monitors back out! The other day while trying to nap he stood up leaned over the rail and fell head first into his trash can. He was actually stuck crying when I ran in. It was the craziest scene. I have ordered him a weighted blanket so hopefully that will help but who knows how long this could last. I am thinking about supplementing with Melatonin but I'm afraid that he will become attached to it and always require this. ???? Any suggestions?

Well, I have finally posted and even learned how to get the pictures put in. YEA for me! The first was his lion costume on Halloween. He was soo cute and actually had fun being pulled around and made to trick-or-treat. We had him sign please and at this age no one expects the kids to say 'trick-or-treat' so it worked out ok. He wasn't able to eat the candy but one of the daycare teachers bought him gluten free candy so he had some of that when he got home. The other pictures- him at the pumpkin patch and then the birthday cake ofcourse. He was scared we would take it away. Enjoy!

Therapy World

Although I have already joined the "therapy world" as a profession, Andrew and all the other family members are joining as well. I now take Andrew to ABA therapy 2X week and my dad takes him on Tues/ Thursday's to Speech and OT at Warm Springs. Wow is Andrew keeping Dad young! Since we moved here he has lost 35 pounds. I am really thankful that I am able to take him to some of his therapy and I am so grateful for Dad's help. I am able to sit and reflect on things, talk to other parents of kids on the spectrum and see other boys his age and older dealing with the same issues. It is tough to see boys 4 and 5 years old with no words and 1 sign and I pray that God will bless Andrew by giving him more language. Last Friday he had a really good day. His Speech Therapist called to tell me that he was imitating a sign that she had done in therapy. I had taken him to my brother and sister -n-laws house and my brother was able to see some great joint attention- looking at Elmo, back at Uncle Cas and then back at Elmo and signing please. Even Felt noticed better eye contact with Andrew. All seemed to go well until Andrew got a little too excited and fell scraping his nose on the bed rail. He is now getting the shock and awe looks everywhere we go. As I sat waiting for Andrew in therapy today I realized that through the years of my work with children with Autism and my level of interest that somehow God had prepared me for this journey. All the time that I spent making materials for children, attending workshops that were never needed for the schools but that pertained to Autism........God was preparing me mentally and emotionally. He gave me a compassion and understanding for these children and prepared my heart. I remember talking to a girlfriend once when I was pregnant, telling her that it would be the worst thing to have an autistic child. Well it's not! It's not a road I would ever choose to travel, but we will fight the good fight and do everything in our power to help Andrew. It's hard for me to realize that God has a plan in this and that someday it will be revealed. I just wish it was on my time and I wish that someone would be able to tell me if we are doing all the right things.

Hope

Everyday we hear more recovery stories from parents of children with Autism. It really provides hope for Andrew. Every now and then we get small glimpses of his true personality. Lately I have been bringing him home after school and putting him in bed and reading to him. Sometimes he listens while sucking on his pacifier and holding his blankey, and other times he looks around humming. I started to read the No David book to him yesterday. He laughed at each page, looking at the pictures, and really waiting for the next page. It is a cute book if you have never read it. Each page "No, David don't play with your food!", Andrew would laugh histerically. It really made me happy to see that I could engage with him. I read it several times and then Felt came home and read it to him. Each time he would look, listen and laugh as we read the line on each page. This is huge for him because I haven't been able to get him to attend to a book since May. Today at daycare he fell and hit his head on the corner of the window seal. On the way home he was still fussy and in pain. At one of the stoplights I turned around to him and said "No David, go to your room!" He busted out laughing, then crying again till I said another No David line from the book. Tonight as I sat in his bed getting him ready to sleep I told him to give Pooh a kiss. After I leaned over and kissed Pooh, he followed and kissed Pooh. It could have been accidental but I like to believe that he understood what I was asking him to do. These little moments are huge for us and really give me hope that Andrew will recover lost skills.

Updates

My dad and I took Andrew to the EEG Monday night. By the grace of God it was completed and we should get results soon. We hope and pray that he is not having any seizures. The experience was pretty hard. He had 27 electrodes attached to his head and a net to keep them on. He was suppossed to go to sleep but instead decided to tried to pull of the electrodes. I had to hold him down while he was screaming until he fell asleep. Not fun! It was definitely hard for Dandy (my dad). I called to see when we get results and they will not give them to us until we schedule an aptmt. Can you believe the run around we get? Easter Seals seems to be giving me a hard time too. At first they wanted to offer us a different OT and now they are sayng that they do not duplicate services so they would discontinue services from them. I feel torn with so many different options, weighing them, insurance, co-pays, ......once again making me stressed and crazy. I feel like I am constantly analyzing and wondering if I am making the right decisions for him. It's hard! I wish there was a clear answer. I have thought about contacting an advocate. Maybe someone who could give me more insight on Easter Seals and what they are suppossed to provide by law. I am praying for the best therapists who have a desire to help him. Wow-this situation is so much bigger than us.
A couple of things that have changed with Drew-Drew lately are his picky eating habbits. We noticed this about a month after the GFCF diet change. He hates red pasta's, but will eat tomatoes. He also cries now when he falls, most of the time. This was hard in the past because we knew he fell hard enough that he bruised but wouldn't cry at all. Scary! We are looking forward to more changes with him.
Please pray for us as we try to make the right decisions and are constantly worried that we have made the wrong ones.

Making me CRAZY!

That's really how I feel lately. All these appointments and phone calls, expenses, messages, tests,bills.......I feel like I am going to go crazy! We were called several weeks ago about the EEG results. There was a faulty electrode resulting in the need for a do over. My dad and I went on Friday for the test but after sitting for 15 minutes were told that the computers were down, so here we are again with no results and I am waiting to take him at 6:45 tonight. He had an ABA evaluation Friday and will receive 3 hours a week of this therapy starting next week. I took him to Warm Springs rehab today for OT (occupational therapy) and Speech evaluations. It was a long visit but they were thorough and I felt like they knew what they were doing. It was hard to hear from the OT therapist that he is one of the worst cases that she has ever worked with, considering she looks late 40's. I knew he was low but it's hard to hear from other people. She was very positive though and excited to work with him. Speech was ok but she told me that if he wasn't able to focus or attend (which he can't for even 3 minutes) she wouldn't be able to help him with language acquisition. I know this too being a therapist, but again hard to hear. I just can't let everyone give up on him. He's not 2 years old yet, and we can't give up the fight this early. I tell myself this but it's honestly hard to keep fighting when I see no improvements and just more regression. I sat in the lobby waiting for the evaluations and the receptionist pointed out some toys he might play with. I couldn't tell her- he doesn't play with toys. No one seems to understand and instead people just seem to stare. The constant humming, flapping arms, walking on toes, falling face first to the ground, disinterest in toys or people, blinking eyes.....it's hard no to be anything but depressed. How did we get this far regressed? Why Andrew? It makes me cry just thinking about it. So, I'll stop. On another note- we had our aptmt with the Thoughtful House nutritionist. It was awesome- she was great and recommended lots of tests, and diet information and an aptmt with ..... Dr. JEPSON. YEA!!! We thought we would have to beg to get in to him but we see him Nov. 16th. I just pray that we can seem some skills recovered, I pray for our Andrew that he will be able to have a meaningful life. Please pray for us as we get more and more stressed, frustrated with eachother, the situation. Please pray for Andrew that God will give him skills, keep him safe. The OT did recommend him wearing a helmet, as hard as this was to hear- I know he needs it. I wouldn't be suprised if he already has a TBI (traumatic brain injury). Please pray for answers for us.