I had to add a poll to the site. My brother-in-law Gabe, is getting promoted to Major in the Air Force in March. So, we are headed to Vegas for 3 days to see him and attend the ceremony. Felt and I are going back and forth as whether or not to take our Drew-Drew. What do you think? Thanks for the opinions, we need to get our tickets soon.
With the start of a new year Felt and I decided to change our health insurance company to a self funded plan. House bill 1919 was approved last year in Texas so that all children on the Autism Spectrum could receive speech therapy, occupational therapy, physical therapy and even applied behavioral analysis (ABA) at unlimited rate as long as you have a self funded policy. The disadvantage to doing this is that we now have an HMO. ARG! So, we have to see a PCP-primary care physician before going to any specialist and Andrew's great Pediatrican that we just found 6 months ago does not take our new insurance. It feels like we are starting all over again with looking for a doctor, one that won't hound us about vaccinations because we have chosen to no longer vaccinate him, and one that will be willing to learn about Rett Syndrome. This is not fun because I have to get someone in the next week so that we can keep our appointments at the Rett Clinic at Texas children's in February.
However, one good thing about the change in insurance is that now Andrew can get 2 hours of ABA every weekday for a year!! I can not tell you how excited we are about this. I know it will be alot for him and for us to get used to but I know that it definitely made a difference when we did this with the Early Childhood Intervention. And he we still have the same therapists that he did from before.
As for school- it seems like they are just babysitting him. I hate that! I don't get any info on what they worked on, did during the day, etc. Every day the teacher brings the kids out and tells each parent "he did good today." What? A good day to you might be a bad day to me. What is a good day, really? I was also informed this week that his aide was pulled to another room and that there will be a sub or someone else to cover until we have our next ARD in mid February. Yes, another meeting to discuss whether or not he needs an aide. I thought this was over but I guess the battle on this has just begun since the district has a hiring freeze and wants to reevaluate every 30 days . I really want someone who can be consistent with him. I think we have some ammo for the meeting in that all of his goals on the progress report stated no progress. Really, no progress? I know Andrew is a lot lower functioning than some of the other children in the class but I also know he can make progress and was making progress before he started school.
The changes in aides has also carried over to home. The person that was hired to be his attendant at home never showed up this week and he had a different person watching him everyday. I usually go to work after they arrive but it took me a lot longer this week- explaining Rett Syndrome to each person, talking about his diet, schedule, dislikes, likes, and trying to warm up and trust this person with my precious angel. It was hard. I hope things get better with this situation too, and I guess it's tough knowing that we will always have these problems. Andrew has to be so confused and I am so thankful that Rebecca, his teacher from Early Childhood Intervention, watches him on Fridays. The moment we get to her house he is smiling. Yesterday one of her daughters asked if she could marry him. Too cute!
One more yea thing- The agency that I work for has decided to pay for Vital Stim therapy Certification for me. YEA!!!!!!!!!! I am super excited as I have wanted to do this for a long time, but it costs a lot of money. I get to travel to Dallas next month and take the 2 day course, take a test and then become certified so that I can help children with dysphagia. I know this therapy works and we got to see first hand with Andrew. I just wish it would have worked longer for him than 6 months.
Ok-enough for now we are off to have a fish fry from the 30 pounds of fish that Felt caught in the gulf a couple of weeks ago. Too bad I don't eat fish!
I have meant to post pictures for a while now but wasn't able to do so till today. So Voila! Here is our newest member of the family- Lucy. She is such a sweet girl and has gained 11 pounds in 3 weeks. She is getting healthy and we are soo happy to have her.
Just a shot to show you how big she really is. Sometimes we forget until we have other people over to remind us.
And here are the pictures from the Christmas Cookie Decorating Party. Can't wait for the next one!
I am a little frustrated today. Andrew's nanny let us know a couple of weeks ago that she could no longer watch him. She was really great with him, so patient and understanding. There were so many days that we would come home and find her out on a walk with him or sitting and reading him books. I was pretty sad about this but understand. An agency here in town has been providing an attendant Monday through Thursday so I could work after he got home from school. The agency found somone to cover these hours so he would have a consistent caregiver. She started on Monday and already she has called in sick. I know we all have sick days but I don't have a good feeling about this and something tells me that this one isn't going to work out. I wish more than anything that we didn't have to deal with the agency and that we had a family member, or grandma that could watch him. He really isn't a difficult kiddo and is soo super sweet loving and funny. Lately he has been waking us up at 2 or 3 in the morning crying and screaming. I'm not sure if this is a seizure, nightmare, or if he just woke up and realized we weren't there. So every night for the past week I have gotten up and put him in our bed, and within 5 minutes he is asleep again. It sure makes it hard for both of us to get back to sleep though and I'm not sure if this is a problem behavior. He has always slept in his bed from 4 weeks old. I wonder if neurotypical three year olds do this too. Anyone???
When Andrew was 20 months old and we had just moved to San Antonio he was in a constant state of frustration and confusion. At that time the only things that could calm him down were music and food. There were some days of poor parenting where we did just let him eat all day. Music was and still is the number one calmer for him, and it actually lowers his heart rate. I had downloaded a song called Just Breathe by Anna Nalick before our move. I initially heard this song on Grey's Anatomy. I had no idea that during those first few months in our new home that this would be the song to keep our family dancing, and connected. In the midst of Andrew's meltdowns, which we now know was him dealing with the regression part of the syndrome, we would all stand in our office listening to this song on itunes and dancing together. It was definitely a difficult time for all of us. We knew he still needed us and loved us and knew who we were but at that time he could no longer show that. We have come to a better place of understanding now and I have no doubt that he knows who we are and that he loves us. I think this was harder for Felt to come to than me, but maybe I'm wrong. I was reminded of this song today as Andrew threw down some major tantrums because he just couldn't fall asleep. I started to sing this song in my head and just like it always worked for Andrew, it worked for me.
I was talking with some friends of ours this weekend about life's trials and challenges. I realized in talking with them that I have shared specifics on how our lives have changed but have not shared the important parts. I don't know why Andrew had to go through all of the illnesses, appointments, surgeries, tests, and now diagnosis of Rett Syndrome. However, I can say that we are better people because of all that he has been through. I think we are more patient, calm (Felt is still red headed, what can you do?) loving and have less anxiety and fear about the future. I know God has a plan in all of this and I am thankful that our faith in Him has seen us through these trials. I know my God is faithful and I truly believe that Andrew and all of the other children with Rett Syndrome will be cured one day. God is good and I can really say that even days like to day, life is good! Things haven't always been this good and during Andrew's initial diagnosis of Autism we both hit some dark places and thoughts where we could sit an entire weeknd in front of the tv and pretend to be in a different life. I am so thankful that we are on the other side of that hurdle and in some weird way I am thankful for Rett Syndrome and the way our family has grown because of it.
On another note- after lots of discussion of pros and cons we have both decided to adopt. Our daughter, yes it is a girl, is two years old and we have named her Lucy. She is a great dane and we adopted her from the Animal Care Services of San Antonio. I went to visit the dogs last weekend with a friend and you know the story- you can't go without coming home with one. She has done very well since Thursday and seems to enjoy being part of the family. When Andrew first saw her he looked at her and giggled. We have spent some time with him sitting and petting her and she is very good with him, letting him eat his meals unlike our other dog Maddie.
After tossing and turning all night, worrying about Andrew's educational placement and the thought of losing his aide, the results are in.......we get to keep his aide!!!!! This was a very quick meeting today, probably lasting a total of 20 minutes. The music therapist did not qualify him for therapy with her, which initally I was upset about, but whatever! The committee agreed to continue to provide him with an aide and review his case every 30 days to determine if still needs an aide- which he will. YEA!!!!!!!!!!!!! I was prepared for a fight but prayed for the best and I am so thankful that we came to an agreement on this one. Maybe it helped that we didn't have our sitter and had to take him to the meeting with us. He greeted everyone in the building by screaming out of frustration for having his nap cut short. It didn't help him that he woke up at 3 in the morning laughing for an hour. Thank you God for Baby Signing Time! It saved a huge meltdown by being played on Felt's phone.
Some of you may know that Andrew has had a one on one aide at school since he started. It is not something that we initially asked for but the school offered this at his first ARD meeting and so we happily agreed to it. This was to be provided to him for the first 30 school days, which ends tommorrow. So, tommorrow we have yet another ARD meeting, which makes it 3 meetings with the school district in a matter of 2 months of attending school. I sit here tonight feeling really anxious, and stressed about the meeting. The last two meetings went ok but this one I know is not going to go so well. I have tried not to think about this over the holidays because I knew it would make me feel this way and I would get stuck on thinking about. The school distrcit has a hiring freeze right now and I am aware that they are wanting to take away his aide. In some ways I feel like maybe he doesn't need that person as bad as another child might, maybe a child that was in a wheel chair. They also have one teacher, 2 aides and 7 children in his class for only 3 hours every morning. Does he really require an extra aide all to himself? Then I start to think about all the help he does need- help with toileting, help with walking down the hall, hand over hand assistance for most all activities, help with feeding. I wish someone could tell me how to feel about this. In some way I feel that if I don't fight for his one on one aide that I am letting him down and I have given up trying to help him. His ABA therapists say he has regressed on his goals since starting school and I know it is because the instruction he receives is not as intensive as our home program. There are so many things that I would want to change about the school situation. I also know that having worked as a speech therapist in the schools that when you complain too much no one wants to help your child. I wish that wasn't the case. Please pray that we keep our cool tommorrow and the best outcome will be given for Andrew. Oh- and pray for our sitter as she is stuck in Mexico and we have no one to watch Andrew at the moment.
We are a family of five living in San Antonio, TX. Our son Andrew was diagnosed at 20 months with Autism. We knew that something was still not right about his diagnosis. After many doctors appointments with specialists and geneticists he received a diagnosis of Rett Sydnrome in November 2008. He continues to struggle daily with communication, swallowing, using his hands and with breathing. We really feel blessed with every day we are given and we are learning to love and live with life's many challenges.