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.

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!