Friday, May 29, 2009

Memorial Day Weekend

This past weekend we spent time in Dallas with Felt's family and visitng the Hansen familly. We had a lot of fun visiting Greenville, TX and taking in a game of Rangers vs. Yankees. It was a lot of fun but the Yankees wooped the Rangers. But, the next day the Rangers beat the Yankees. AHH!

Andrew and his Aunt Whitney. He started out with hat and glasses on
sitting down but it got hot and humid quickly and he spent time walking
around with his grandmother.

Here is a photo of Grandad and Uncle Brandon. Grandad always
has his guns up for those Red Raiders. He wishes we were all Texas
Tech fans.

Photo after the game. He has a weird expression but lately
he loves to wrinkle his nose. Silly boy!

He sure loves his Aunt Whitney. What a sweet boy!

Thursday, May 21, 2009

Pictures of our Little Man

Finally some pictures of Andrew
at school. I took these as
he was coming out of preschool.
He looked worn out today.
I was afraid he might swing
backwards off the bench, but
he managed to sit for a bit to get
these pictures.

What a big boy with his
backpack on. I am so proud
of him. YEA Drew-Drew.

Monday, May 18, 2009

Reflecting on the Last Post

After posting about today's ARD meeting I realize that I was wrong about things. I could always choose to delete the last post but I thought I should keep it to show myself and others what emotions parents go through at these meetings. After reflecting I know that all staff members that were there today really do care for our Andrew and want the best for them. They may not always know how to go about providing the best education for him and neither do I. I tend to have a guard up at these meetings and don't really let people in and I'm not sure why. Andrew's eye gaze is probably not want I think it is and I guess I had hoped he would be ready for a more advanced system of communication. I feel like I asked questions but got no answers and that is hard for a parent that wants her son to make progress.

I remember back to working in a school and talking with a parent of a child with severe autism before their ARD meeting. I asked them what was most important to work on in terms of speech therapy. The father's response was "I just want him to talk." This was a child that had once talked and gone through regression and never talked again. I now look back on that and have a better understanding for what he was going through with his child and I to just want Andrew to talk. I would love for him to be able to tell me about his friends at school and all the the things that he did outside with the neighbors. Sometimes that lack of having what I want for him turns to frustration. Not a good thing!

Throughout Andrew's life he will rely on others to teach him, help him, and care for him. I have to learn to let down my guard and let people help him and our family. I am so thankful that Andrew can go to school with friends and I know he loves it. He has a smile everyday as we walks down the hall. I realize that the staff don't have a lot of knowledge of Rett Syndrome and virtually none on boys with Rett Syndrome. It will be a process of educating myself and the staff throughout his school career. I still feel like there is soo much that I don't know about this syndrome and so much to do to help Andrew. I just wish there was a how to manual on this to tell me and Felt- yep your're doing it right, now try this. Aahhh.

Andrew is now attempting to walk into school with his backpack on all the way to the classroom. I will have to get a picture of it. It's really cute and I know it has to be hard for him.

Another School Meeting

Just got back from another ARD meeting at school with everyone. They wanted to update and reveiw goals. I hate these meetings. I really hate them. Everyone tries to be sweet and act like they care when I know that Andrew is just another number in spec ed to them. I thought I could handle this ARD alone today and I got a little ticked off and vented frustrations out on the whole group. The teacher who I wasn't sure about a first is actually doing well and trying very hard to help him in everyway possible. I am so glad I have the rapor with her and that she was there. The augmentative communication specialist says that Andrew's eye gaze is poor and that he is not ready for any type of high tech device and that he doesn't always show his communicative intent. I told her I disagree and that the activity that she had done with him must not be very motivating. I told her that we borrowed an M3 from Dynavox but that sadly we weren't able to program it enough to work with. She said he is not ready for that. I told her my main concerns in terms of school are for Andrew to have a voice and asked about what equipment we could get for him to communicate. She said a big mac switch is what they are using. Duh? We have one at home and he has mastered that, can we challenge him? With Rett Syndrome always assume competence! Come on! I got flustered and told her that he could have a tantrum and need to use the restroom but has no way to communicate that and as a Speech Pathologist that really upsets me. I started to cry but controlled it thank God. How embarassing that would have been. Then they argued over using an adpated fork. My main concern with that is that now he can barely use his hands to pick up a piece of food. More frustration. The goals just seem to be a repeat of what we have done with him for more than a year. That has to be so boring for him and I hate it! The SLP tried to add a goal about Picture Exchange Communication System. I informed the team that we tried that in early intervention for more than 6 months but was unsuccessful due to hand grasp and that we had discussed this at the first ARD meeting. Then she tried to say they would use blocks or pegs with pictures on it to for the exchange with communication. Tried that too and it didn't work. When will they start to think outside the box? I am drained. Please pray for Andrew and for me as I feel like school is a total waste other than socialization.

Friday, May 15, 2009

Andrew struggles daily to use his hands for every day tasks. I thought I would post some pictures of him working on eating with a fork. We have worked on this for a year now and little progress has been made. I have to hold down his left hand so that he won't wring his hands together and so he can concentrate on picking up the fork. Here he is picking up his fork. Notice the food that gets thrown across the table after he takes a bite and then drops the fork. What a messy eater! This next photo is a picture of the apraxic movements that he has. He thinks he is pulling food off the top of the fork but his hand is not on the fork at all. I couldn't caputre the next moment where he puts his right hand to his mouth thinking that he actually picked up the food when he didn't have anything. He often does this over and over and gets easily frustrated. Hard work for this little boy!

Andrew's class had a field trip to the Children's Museum yesterday. Here are a couple of photos of the kids in his class. He had a good time looking at all the fish and playing with magnets.

Andrew continues to do well with potty training. I am so proud of him. He always goes when we take him and he will even have a BM on the toilet too for us. And we have gotten his attendant to buy into the whole idea. We are all a work in progress. Another yea for our big boy is that he is gaining weight. After taking him off the GFCF diet and introducing the candy for potty time, he has gotten a little tummy. I love that little tummy. Hopefully Dr. Motil will be happy when we see her this summer. Sorry about the layout of this post. I guess I am still learning on how to post pictures.

Friday, May 8, 2009

Some Road Blocks

After not hearing anything from the adoption/foster agency for a week, we got a call. This call was not necessarily good nor bad. Our family was "red flagged" (yes that is the word they used on the phone) for several reasons. The caseworker had some concerns as to why we had never received counseling nor attended a support group after Andrew's diagnosis of Rett Syndrome. I explained that there is no support group for Rett Syndrome here in town and especially not for boys with Rett Syndrome. He is one of 6 known boys in the world with the syndrome. I also explained that Andrew's regression started happening around his first birthday and that we have had plenty of time to process and go through the grief cycles. When we got his Autism diagnosis we did attend a support group meeting. It was not a right fit for us in that many of the attendants were Spanish speakers and had children that were older in school. At that time Andrew wasn't even two yet, and having worked in special education for 5 years I did not need to learn about the ARD (admission-review-dismissal) process. We had just moved to a new town, were both working full time jobs and trying to make all of the appointments for MRI's, sleep studies, EEG's and repeated EEG's. All of this was on top of tyring a biomedical approach to treating what we thought was plain ol' autism. We were doing the GFCF diet, giving him probiotics, digestive enzymes, taking him to the Thoughtful House and even had him on Valtrex for a while to kill what we thought was a virus in his body. And yes that is a STD drug. Scary and gross now. What I am saying is that we didn't have time to fit in counseling or support groups, maybe we should have made that a priority but here we are and we're still making it work. The caseworker feels like Andrew's diagnosis of Rett Syndrome has been very soon- November of 2008 and we still haven't gone to counseling. In my opinion not everyone needs counseling. We knew last spring that this was either Rett Syndrome or Mitochondrial Disorder and were searching for the right doctors to listen to us. Thank goodness for Texas Children's hospital and the Blue Bird Circle Rett Clinic. Although we don't attend a support group for special needs parents I feel like we receive so much support through family, friends, teachers, therapists, and all of the doctors. I even feel like I have received so much support through this blog. Although I have never met any other families or children with Rett I feel like I have. I can read about their struggles and know that we are not in this alone. We fully accept this diagnosis and are at peace with our life situation. Sure, more than anything we want a cure for our son and for all of the girls. After getting off the phone with the caseworker I felt like a bandaid was being pulled off very slowly. Hurt!!! I felt and so does Felt, that we are being judged and some what discriminated against for having a child with Rett Syndrome. You would think it would look good that we have made the best out of an adverse situation but I guess not. We would be better off if we had ten cats sitting in our house and no children. Does that make sense? Not to me! We aren't sure what is next in this process or even that we want to continue with this. Please pray for us and for all of the children that sit in foster homes waiting to be adopted but are being help up with buracracy. It really breaks my heart for these kiddos.

Thought I would add a couple of photos of Drew-Drew. The first one is him crashing out in the recliner while watching Elmo. I wanted to include a photo of him with his hands. This is the wringing that he does that tears up the inside of his hands and has disabled him from playing with toys or eating. He does it all the time except when he is tired.

Friday, May 1, 2009

Our Home Study

Well, we cleaned the house, got paperwork completed and had our home study Wednesday. It was not as easy as I expected. The case workers were here for 4 hours sitting at our breakfast table asking questions. It was really kind of hard. They asked a lot of personal questions and I had to re-tell our story of Andrew's development and diagnosis in detail. When they left I felt exhausted and worn out emotionally. It's easy to tell a quick version of what has happened to Andrew and our familybut when you have to give all the details and talk about everything else in your life it almost feels like a counseling session where they just sit and stare at you. Glad that is over! They asked us about what ages and kind of children we would be willing to take in our home and told us that we would be waiting and it could be 6 months before we got a placement. We were disappointed and at that moment felt like we had done all of this work for nothing. Not nothing though. We know that God has a plan for our family and his plan is perfect. We know that we want to make a difference in the life of a child or children and that it will happen in his time and not ours. It's hard to sit and wait. I'm not a very patient person. As for the children we would take we said any and all races and children that were ages birth to two years. We told them that we would have to think about any children with disabilities or behavioral/emotional problems on a case by case basis and that we were open to that possibility. 80% of children in the foster care system have been sexually abused and because of that statistic we have to be cautious about the age of the child and the level of involvement. The last thing we would want is for a child to act out on Andrew and him not be able to communicate that to us because of his disability. I really think having a brother or sister for Andrew would be great. I have noticed that he is more fussy at home when he is alone than when we have other children in the house. Maybe it's boredom. So, we wait.

This weekend Andrew will be at his grandparents and I will be in Abilene for a girls weekend. I am meeting up with my best girlfriends from college in our college town. We have no set agenda but we will probably sit in our hotel room chatting all day and night. Time flies! It seems like the other day I was sitting with them in our dorm room making Ramen noodles and Mac and cheese. Ah, good times!