Encouragement and Support

This weekend we have been feeling very encouraged and supported. My parents came for their weekend visit and we were able to hang out with the family, relax and plan for Andrew's care. We have been getting lots of phone calls, emails, and mail all showing support for our family. Several family members have started wearing Autism Awareness bracelets that my mom bought. My brother Casady has been on a "Cure Autism" crusade lately. He found a website http://www.stankurtz.com/ that has been helpful in looking at the biomedical approach that we are taking and that has a lot of recovering child videos. They are awesome to view if you haven't seen any before, and they provide lots of hope for us and other families. Some people have offered to babysit (thank you, thank you) and others have offered to have garage sales with proceeds to benefit Andrew's treatment. We have gotten lots of phone calls, emails and mail from friends and family. We really appreciate everyone's thoughts and prayers. It really shows us that we are not alone in this.

My sweet mother got to witness one of Andrew's tantrums yesterday. We were at the mall and the plan was to go straight to Stride Rite, purchase new shoes, leave the mall and let him listen to his Simon and Garfunkel CD. It's his favorite. I don't know why but it does wonders to calm him down. We went into the store found new shoes and waited with many other families and their little ones. Andrew decided to scream at the top of his lungs and would not stop. I don't know why I was so shocked. He does this everytime we are out in public, which is why we never take him anywhere and Felt and I take turns getting out. He proceeded to hit the saleslady across the face as she attempted to measure him. During the frustrating moment I started to lose my temper at my sweet and helpful mom only to look over and notice that everyone in the store was staring at us. I can try to calm Andrew during moments like this but it never works- he doesn't understand and we don't understand why he is screaming. I am sure everyone was thinking- why doesn't she calm him down, and what's wrong with him, or she is such a bad mom. It's was very embarassing and frustrating. After I purchased the shoes I met my mom out in the mall to see that he was still screaming and he didn't stop until we got in the car. At first my mom thought I was being a little too self conscious about it but she told me later it was really loud and it was embarassing.

My prayer life has helped me find peace and comfort even in the midst of this crazy time. My mom gave me a book- Finding God in Autism by Kathy Medina a mom of a child on the spectrum. It's a daily devotional and I read it every morning before I get Andrew up. It's really good! We have also been attending Oak Hills Church (Max Lucado's church) and we have really enjoyed the worship service along with getting to see more family members who attend there.

This week we have lots of aptmts. Tommorrow I have a phone aptmt with the nutritionist from The Thoughtful House. She's suppossed to be awesome so I am excited to see how she can help. I really would like to kick things up a notch though because I feel like we are losing more time not making progress. A case worker from Any Baby Can will be here tommorrow to look over finances, disability information, respite care and provide weekly in-home services. I got a call that his EEG did not take because of a faulty electrode. So we have to go back and have another EEG- this week. Can you believe it? They are soooo dumb! I told the lady we would come but we were not paying another co-pay. I hope to get a call from a physical therapist tommorrow because the one that was supposed to eval him on Friday never showed up at the daycare like she told me she would. It stinks that the early intervention services that are federally funded and passed through law are so crappy. Some weeks all of Andrew's therapists show up to see him and other weeks just one. I called to complain on Friday. You would think they would be a bit more careful since I am a therapist and know my rights and the law, but NO. They haven't seen Felt angry- watchout!

One exciting thing this week- we are getting new carpet!!! YEAH!! We knew when we got the house we would have to do this. So after picking out the color and style - it is Rice Paper- burber. Sounds gross but we are excited and it will be installed Thursday. YEAH and thank you Dad for offering to be here when it's installed.

One thing I am worried about this week- I have to talk to my boss about me cutting back on my hours. I will have to take Andrew to therapy 2 days a week for ABA and it means I need to work 4 days a week instead of 5. Please pray about this. I don't know why I am so worried. I will update more later.

Doctors, Doctors, and more Doctors

We had a follow up aptmt with the neurologist, where he was supposed to have results of Andrew's EEG, Sleep study, blood work, and complete an Autism assessment. My dad and I were met with an uprepared physicians assistant who had no test results and completed the CARS- an autism rating scale in 5 minutes. I was very disapointed because the assessment tool was not used appropriately and I felt like I knew more than he did about the actual disability. What a waste of an afternoon! He did go over the sleep study results, also questionable in my mind. Andrew was having a difficult time with asthmatic symptoms during the sleep study and coughed for what seemed like hours. I didn't feel like it was an accurate picture of his sleep, but now they are referring us to an ENT to look at having adenoids and tonsils removed. I haven't scheduled this because I'm not sure that is the answer to any of his problems. I guess it wouldn't hurt, but it seems like they are just looking for another surgery bill. I have read that many children on the spectrum are being referred for this surgery but that it really doesn't help any of them. One thing the P.A. didn't go over with us is that a referral to a cardiologist was recommended from the sleep study- what? and why? His pediatrician called last night and tried to explain to me, but I am not understanding this. It's all about $$. I hate to think that his Autism diagnosis was completed by someone so incompetent but The ThoughtfulHouse charges $500. Yikes!
On another note- we went to a support group last night. It was downtown, definitely not as nice as Dallas or Austin. This is the first time we went somewhere south of 410, except for weekly trips to Whole Foods. The presentation was for school age kiddos, so it didn't really apply, but it was nice to see other families and to mentally prepare for what's ahead. Maybe we are just really ahead of most parents with kids on the spectrum- because I haven't met any other ones Andrews age.

We are getting set up for ABA therapy. He has an evaluation on Oct.9th for ABA at Treehouse Pediatrics- they work primarily with kids on the spectrum. They are recommending 4 hours a week of ABA at $1200 a month. Another Yikes! We wish our insurance would cover this but none of them do. My heart really hurts for all of the children that will never have the opportunity to receive these services, but thanks to great family we will have support. He also has a Physical therapy evaluation, OT, and ST-speech eval on the 8th at Warm Springs Rehab. They are suppossed to be the best clinic in town and I feel like they might be able to help more than Easter Seals our Early Childhood provider.

Please pray that God will continue to provide financially for us through all of these services because we will go into debt if we have to. I knew I should have taken that Financial Peace class at Prestoncrest before we let Dallas. Please pray that we have made the right choice in clinics and therapists and pray that Andrew will be free from pain. He seems to be crying a lot lately and falling all the time. I'm afraid I might get turned into CPS soon if the PT doesn't start providing services soon. Oh- and Pray that I don't go crazy from all of this stress.

ABA

Felt and I attended a one day workshop on the ABC's of ABA (applied behavioral analysis) yesterday in Austin. Although I had to do a lot of nagging to get Felt to go, I think he enjoyed it. There were other parents there as well as teachers and therapists. ABA has been around for more than 40 years and started with B.F. Skinner. It is a way to teach children with Autism through working on there behaviors. Kelle Wood-Rich was the presenter and she was really good. She started out in the Dallas area and moved her practice to Austin. She discussed the antecedent-behavior-consequence. It allowed Felt and I to look at Andrew's behaviors- crying, hand flapping, etc. and realize that we are giving him positive reinforcement for negative behaviors, which tells him to keep doing it. Felt was really able to absorb a lot of the terminology and was able to talk to another dad. I think this was the first time he had talked with another parent of a child on the spectrum. It allowed us to think about the future- what we wanted in terms of therapy, schools, treatments, etc. We were a bit disappointed when Kelle, the presenter, said she wouldn't consider the kids that made progress recovered because it gives false hope to parents and that there is no cure for Autism. We know there is no cure, but how about giving some hope? I always knew that 20 hours a week of ABA is recommended for these kids but it was frustrating for us to hear, because who the heck can afford that at 100 dollars an hour? Maybe Jenny McCarthy but not us. Let's hope we hit the lotto soon!

Oprah on Autism

Today was a great show for me. I don't get to communicate with other parents of children with Autism that often and it was nice to hear what the two ladies had to say. I feel like I am going through the pain and dealing with a lot of similar issues. I can relate to the pictures that Jenny had of her son- the happy smiling faces and then the blank empty pictures of her son- just like Andrew. I remember when he go his vaccinations and especially the MMR. I talked to the nurse and told her how nervous I was- she dismissed my fears. I prayed to God and crossed my fingers telling Him- I can't handle any more so please do not give me Autism. I remember him being sick at the time and I can remember him losing all of his words, and sounds. I remember when Felt would sit with him and sing "If you're happy and you know it clap your'e hands." Now we can barely get him to sit and listen to us sing the song, he hasn't clapped his hands since he was 14 months old. I do a lot of remembering when's lately. I know it's not healthy but it's hard not too. I was thinking tonight that I remember when he would wave bye, bye and say bye, bye to the water as it went down the drain after bath time. He would never do that now- I have to physically hold him down to dry him off as he screams each night after bath. This summer was a hard time as well- I remembered the summer before when he would play with bubbles and say 'bah, bah" wanting more bubbles. Now I can't get him to communicate that he even wants more. He is now a nonverbal child and communicates through his one sign- please, patting his chest. It's hard but he is now losing this one sign. I listened to Jenny talk about the light at the end of the tunnel and seeing that light. For me, the only light I see is Heaven- where I know Andrew will be able to call my name, be free from pain, tell me that he loves me and play ball with his daddy. That is the only thing that I can look forward to. Not a bad thing, but I am praying for days on earth that I can look forward to.

Funny thing today- his pediatrician called me and we talked for a bit. I think she likes us because she hasn't had too many kids on the spectrum. She called to tell me that the FLU vaccination is in- ha, ha. She stressed how important it is that he get it. I know she thought that I was crazy but I told her we were not interested and that he wouldn't be receiving any vaccinations until I felt that they were safe for him- how about never? Doctors won't let up about these , but if it were their own children they sure would feel differently.

The Thoughtful House

Updates:

Andrew had his sleep study and EEG on Thursday night. I went with him and stayed the night. It was a rough night of sleep. It will be interesting to see the results. He had 27 electrodes on his head and 5 or 6 on his body. He also had a nasal canula in his nose to check oxygen levels. He tolerated the process of putting them on as long as he was watching Baby Einstein- gotta love those DVDs and the music that they have. We arrived at 7 pm but the process of putting the electrodes on lasted till 9:45. They woke us up at 5am to get ready to leave, so he didn't get the best sleep that night.

We have been in contact with the Thoughtful House in Austin. This is a center that does biomedical research and intervention to recover children from Autism. They have really given us some hope. I had an hour phone interview this week, which was intake and then Andrew's case was presented to all of the doctors to see what the next step would be. They suggested an aptmt with their nutrionist which will be on Oct. 4th? I think. After this aptmt we will have an aptmt with Dr. Jepson. He is very well known in the field with Autism, has a son with Autism, and has written a new book- Changing the Course of Autism. My Dad bought us a copy and has been reading his copy. He said it is soo good and provides lots of hope for our children on the spectrum. I am excited about this, especially since Andrew seems to be getting worse. Their website is www.thoughtfulhouse.com

Andrew has been coughing for 3 weeks, we started thickening his liquids again to honey. Obviously the SLPs who were so rude to me this summer didn't know what they were talking about and did a horrible job on his swallow study- $90 dollars down the drain. It would be fine but we know he is in a lot of pain- crying, coughing, crying some more. It's frustrating and even though we don't want him on any meds that could potentially slow his development even more I have to take him a pulmonologist on Monday to get him checked out.

Yesterday he had a great day. We started out at Sea World where he smiled and stared at all of the fish in the aquarium and relaxed in the stroller. We then went to Gymboree for his cousins, cousin- Sophie's 2 year old birthday party. He loved it! This was the coolest party. All of the kids ran around jumping, running and climbing on things, and dancing to music. The kids had a blast! After a nap we hung out with the Altamirano family and relaxed. What a great day!

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.