Trip to Holland

When you're going to have a baby, it's like planning a fabulous vacation trip -to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

" Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around... and you begin to notice that Holland has windmills... and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

by Emily Kingsley

I thought this really captured what we have been feeling lately. Felt and I have looked at ourselves recently and said "I'm not sure it's Holland...kinda feels like Juarez, Mexico."

EEG and Sleep Study

Andrew will have an EEG and Sleep Study on the 13th at Methodist Children's hospital. We will be able to get results from this on the 24th as well as get a severity rating from the ADOS and CARS- Autism Rating Scales.

Feeling Down

Well it's Labor Day weekend and we are spending it like almost all Labor Days in the past years, doing nothing. We did have the opportunity to go to Red River with the Mounce family but we weren't able to communicate and get our act together to go. Very disappointing for us and for them. I know they were looking forward to seeing Andrew. It would have been difficult for us but it would have been fun and good to see everyone. And we love the outdoors.

Lately Felt and I have been feeling pretty depressed and down about life's situation. Things are sometimes hard, it just makes it harder because this is not what we expected in life or for Andrew's life. Andrew has been sick the past couple of days. He got a cold from daycare and you know how that goes, coughing, runny nose, irritable child. It is like a repeat from the beginning of last school year. He wakes up in the middle of the night coughing, and then ends up vomiting. FUN!! I love waking up at 2 am to be bathing Andrew and washing sheets. He is worth it though, I love that little boy! Although he was cleared by HealthSouth from the swallow study for liquids, Felt and I feel that he still has dysphagia and still needs Vital Stim therapy. We aren't sure if we should go back to honey thick liquids, nectar thick?? It's frustrating. I feel like all of those aptmts this summer for therapy were for nothing. I have an aptmt for him to go to a pulmonolgist but really if it is dysphagia there is nothing breathing treatments or a lung specialist can do. Since we can't go back to HealthSouth he is on the waiting list at Warm Springs Rehab. It stinks that they have morning aptmts available but I can't take him because I am at work. Why is everything for these kiddos waitlisted? I don'tunderstand 1 in 150 kids are diagnosed but there is hardly any services for them. I know God is in control but I have to admit that it is hard for me trust and have faith in him. The other night I started crying and couldn't stop as I was trying to get Andrew ready for bed. I have told myself that I am not in the grieving process anymore but I think it is cyclical and I haven't really let myself have a good cry. I don't like to be down about things because it does nothing to help Andrew or us, but sometimes it's hard not to feel this way. I was talking to our PPCD (Preschool Program for Children with Disabilities) teacher about this process. She has a son with Autism that is in middle school. She informed that it doesn't get any easier but that we learn to deal with it better. That was hard to hear.

This week will be difficult for Felt. I will be in Austin Tues.-Thurs. for a workshop and he will be in charge of getting Andrew ready for school, dropping off, picking up and doing dinner and bedtime. Shouldn't be too hard though, I do this everyday.

Please continue to pray for us during this time and for Andrew that we can get him the best doctors and therapist to help him.

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.