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.

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.

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.

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!

Updates

Last week Andrew's class had a field trip to the zoo. I wondered if it would be chaotic like it had been the week before. Nope! He had so much fun and the weather was in the 70's with a little drizzle off and on. He loved the birds and the fish. I would point things out to him and suprisingly he would look in that direction about 10 seconds later. He smiled a lot and didn't do a lot of wrining his hands. I have got to take him back, it was soo much fun for him. I really enjoyed talking to other parents there about Rett Syndrome and their children's diagnoses. It was nice to have people around who understood frustrations, disappointments and who could enjoy Drew-Drew. And the best part was that there was hardly anyone at the zoo that day.

We have 2 more ARD meetings scheduled with the school. They are offering summer services because he did show regression this year. I am turning that down because it means a different school 30 minutes across town, with a different teacher, and only a couple of weeks. I would rather work with him at home and take him to SeaWorld, Zoo, children's musuem, etc. Not only that but now he has OT, PT, Speech and his 2 hours of ABA everyday. That's a lot for a little boy. We also have an annual ARD meeting before school lets out to change goals and talk about some concerns I have. I expressed the concern that he doesn't have a voice in class and although they tell me they use augmentative communication, I am not seeing any or hearing about it.

Next week we have our home study with the adoption agency. Our caseworker is suppossed to be here for most of the day. I am a little nervous about how it will go- our needy great dane Lucy rubbing her face on people, Maddie our dalmation waiting for you to drop some of Andrew's food, Andrew throwing a tantrum over Elmo dvd's, work calling my cell phone several times a day, AAHHH! Let's hope we pass!

Today is the big FIESTA party at Andrew's school where Kindergarten has a parade with their
FIESTA floats. Every child makes their own float and dresses up and plays mariachi music as they go through the halls. It's a San Antonio tradition and FIESTA lasts for several weeks with parties and daily parades downtown. I was sad to find out that Andrew's class doesn't get to participate. I really need to start talking to them more about inclusion.

Every afternoon several of the kiddos on the street ring our doorbell to ask if Andrew can come play or 'is he with his nurse?" It's really sweet. We both go out and sometimes with the attendant here and play duck, duck, goose and watch them as they play in the cul-de-sac. One little boy, a 2nd grader asked when Andrew is going to learn to talk. What do you say to that? I told him that Andrew is a very special little boy and that he may never talk but we love him anyway and that's why we help him so much. He was so cute to Andrew and says hi to him every morning as they pass in the hall at school. I wish I would have had a better response to his question, like 'he talks with his eyes.' Oh well. Another little boy sat always asks if he can pull him in the wagon. It is too cute to see him pull Andrew around the street. I need to get a picture. Kids are so great, they just want to help and really love on him. I am so glad that we have the opportunity to show them that Andrew can play too. Just not sure their parents would appreciate them inviting themselves into the house, playing with our crazy dogs, and asking for drinks. I do love this though!

Rett Syndrome Attacks

Well I have almost lost my cool today. Andrew woke up at 4 am screaming again. This is becoming an everyday occurrence. After climbing in the bed with him he went back to sleep for 20 minutes only to stay awake the rest of the morning swinging back and forth with his hands while I tried to sleep. We made a mad dash to get ready for church and off we went. It was loads of fun pulling him out of the car seat with bag, purse, and umbrella while it poured down with rain. Thank goodness for the handicap parking sticker. He made it almost through the entire service but in the middle of Max Lucado preaching he let out a big burp. It was too funny!
When we got home Felt and I tried to feed him lunch which turned into a screaming fit that lasted 45 minutes. Only Elmo which we are trying to fade out calmed him down. Constipation was the real problem and has been since we have taken him off the GFCF diet. After a trip to the bathroom and an Elmo video we tried again while attempting Vital Stim with him. His swallowing and chewing have gotten worse and since we have 4 months to our GI aptmt I am desperate to get it better. Once again another fit. Every time I do vital stim with him it turns into a tantrum. ARG!!!! I kept on and held his hands while trying to feed him the nutritious meal I made him and we lasted 15 minutes on vital stim. Better than nothing I guess and there is always tommorrow but after listening to the screaming starting at 4 am I am worn out. I am frustrated and days like this I know that Rett Syndrome is attacking him and our family. I would have loved an Easter egg hunt, pictures at church with his cousin and maybe a trip to the park but it wasn't going to happen today. And I would have loved to see him enjoy his cousins birthday party yesterday. I remember back to last Easter when he screamed the entire time we hunted for eggs. Most days he is our happy boy but these days it has become really difficult for us and sad for him. I tried to take him to the zoo last week after preschool. It was immediately chaotic for him with all the elementary schools in town there. He did a lot of the retropulsion-swinging back and forth, but he did enjoy the birds and would stop wringing his hands to look at them when I called his attention. More and more I notice other kids and adults looking at him and staring. People are so insensitive and just don't understand and I guess they are curious too. A year ago most people would have looked at him as a two year old having a tantrum or doing something weird, whereas now people look at him and see that special needs boy. Whatever the case he is our angel and I am thankful everyday for him and the things that he teaches us. I would like to say the staring doesn't bother me but it does and hopefully I will adjust to it like I have with everything else. I look forward to the day when we are all in Heaven and I see him running and saying "Mom, I love you." I long for that day and days like today I am definitely homesick, which makes me think of the song by Mercy Me called Homesick. Please pray for us and I hope everyone has a Happy Easter.

Momma's gettin' old

Well, I turned 30 this week. Kinda uneventful, but I am feeling a little old lately. My sweet brother Cas and his wife are babysitting this evening and Felt is taking me out for dinner. Although I am thankful for an evening like this, I would almost rather sit in my pj's and cuddle up with Andrew watching tv. I guess I was never big on going out.

This week has been a little crazy. Andrew's attendant (and she is just an attendant not a nurse, not that it matters) and I got into an arguement over her job responsibilites. It started when I wrote on a dry erase board that I wanted her to swiffer the playroom floor and put him on the potty every hour. After calling the agency, she agreed to the list, but soon after vented to my husband who then vented to me. Something about how I don't appreciate her, and I am not her boss, and she does lots of other things that she isn't suppossed to do. It took me a day to get over it but I was really upset by this because I appreciate every little thing that she and anyone else do for Andrew. I tell her everyday before she leaves that I appreciate her. Guess that doesn't count though. Just need to keep praying on this situation and pray that I can back down on my job and only have her here a couple of days.

Andrew is still doing well with the potty training. He wears pullups during the day and diapers at night and goes #1, and #2 when we take him. I thought we would have to sit on the potty for a while but nope, he goes within a few minutes. YEA for Andrew. My big boy! He is also going at school and with the attendant as well as therapists. Yea for generalizing this skill! We still have a ways to go and my hope is that one day he will walk to the potty to communicate that he needs to go.

We had a Dynavox representative come out last week after I called and nagged him about wanting to see the Eyemax device. I had heard from other Rett mom's that it is successful for their girls in communicating using eye gaze. Once the rep saw Andrew he said that the device would not work for him and suggested another device called the M3. He said that because Andrew is walking and constantly moving it just wouldn't work. We tried out the other device using an auditory scan method with a switch. He had to choose between food and music Boardmaker pics. I'm not sure he understood what to do because he kept hitting the switch over and over again. I filed a dream contract with the company and because I am an SLP I get to try the device out for 24 days. So, we'll see. I will keep everyone updated.

Another big yea for our boy- Last week I begged, really begged my boss with the home health agency to make an exception and bill our insurance company for OT, PT, and speech therapy even though they don't take our insurance. He talked with the COO and called me to say that they would accept Andrew's case because I am an employee. YEA!!!!!!!!!!!!!!! Our insurance only covers one clinic in all of SA for these services and that is a no go since he needs home health. Now he will get his ABA, OT, PT, and speech therapy. He will really be a busy boy, but the more the better for him. Man this takes off a big stress for me.