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.
Rett Syndrome. One year Post Surgery
3 months ago