It has been a little while and we have had some news to share but been slow to post. We have two foster children that have been with us for 2 weeks now. They are sisters, a three year old and a one year old. Rose and Madison. We aren't sure how long we will have them but would love to have them forever. They are the most precious girls and we are a lucky family. It has definitely been a little crazy around here- getting everyone off to school and daycare, everyone fed, backpacks packed, shoes tied and not to mention the hair done. I had no idea the first week what to do with a girls hair. I am learning and loving it. Friday night we did nails together. Too fun! Andrew has enjoyed the girls up until the last few days and now will cry when the slightest bit of attention is given to someone else. He is learning to and adjusting. He is also taking hippotherapy every Wed. and loves to ride- so much so that he fell asleep during his evaluation on the Welsh Pony. I will try to keep up a bit better with the updates but for now we are having lots of fun and adjusting to a big family. GOOD TIMES!!!
It has definitely been a while since our last post. All is good in the Mounce house. A few weeks before school started Andrew got sick and was not eating or swallowing well. We got very concerned and realized how possible a feeding tube was for him. With lots of prayers and well wishes he is back to his hungry little self and could eat all day if we let him. It still takes him a while to eat everything but the appetite is there and we are soo thankful. Breatholding for him has gotten worse as he is holding his breathe for longer periods and straining while his face turns red. He hasn't passed out yet that we have noticed. It is a part of the syndrome that we have no control over and bless his little heart it has to be really hard for him to focus when he is doing this.
Here is a picture on his first day of school this year. There is a big glare but isn't he adorable?? We had a wonderful summer and got to visit some sweet friends in Kingwood. This is Andrew's buddy Lincoln that we haven't seen in several years. He was so great with Andrew and treated him like any other little boy. I still laugh when I think about him having a pillow fight with Andrew on the bed. Andrew loved it! What sweet boys! We also got to see our Granny in Huntsville and go to church with her. After a day of driving, church and a good Chinese buffet he was pooped! Granny - we love your crayon scribbles on the chair. What beautiful artwork.
Andrew is back at school and loving it. He smiles every morning and gets super excited as I talk about seeing his friends. We had some photos done by a friend back in Dallas 2 weeks ago and I can't wait to share some of the pictures from that. He loved walking around the barn, watching the turkey and chickens and looking out at the pond. He will soon start hippotherapy lessons with a physical therapist at a place east of town once a week. This is the therapeutic horseback riding and I am sooo excited for him to get to ride. He loves animals and being outside so I think this should be right up his alley. We also have an augmentative communication evaluation this week with a speech pathologist. I really hope this goes well and I just hope that she will see what a lot of us do- that he is a smart boy and that he is in there. He understands so much lately and it is exciting to see him learn new things every day.
As for our quest to adopt a child- we were unable to adopt Felix the boy we had mentioned previously. He is an adorable little boy that was placed with another family and we are thankful that he now has a home. We were one of four families interested in him and after the waiting are thankful that he just has a family. We were called this week about a 19 month old girl east of town that needs a foster to adopt placement and her caseworkers are reviewing our file with many others to determine the right family. We are not really anxious about it and don't know what to feel. I feel like our family is red flagged because we have a child with special needs and Felt and I realize that if we never get a placement that we are ok. We would not trade this life or our Drew for anything. We have learned more from our sweet boy than we could ever have imagined and we know true love because of him.
We have been dealing with a little of both of anxiety and depression lately. Last week Andrew woke up every morning screaming and whining and stayed frustrated and anxious all day throughout therapy sessions. It was very difficult for the therapists to work with him and everyone was wondering what was going on. The routine was the same and we were doing everything we could to keep him calm and happy but we couldn't let him watch the Mickey Mouse Club House all day or let him listen to the same CD over and over- which let to some major meltdowns. It would start at 5 in morning when I would wake up and hear him whining and screaming. Wow that tested our patience and thank goodness for a great support team of attendants and therapists. The anxiety which disrupted any good work in therapy was finally resolved Friday morning when he woke up and was quietly cooing in his bed. I was soo relieved and my happy boy was back. He had a great weekend going to a birthday party for one of my patients. I should have taken pictures because he had so much fun with the inflatables and me bouncing him. My back is killing me now but is was worth it to truck him up an inflatable slide and slide him down while he laughed. What we will do for a smile! He loves being around other children and watching them play. His Nonnie and Dandy came to visit and Nonnie watched him Saturday night so his dad and I could catch a movie. Thanks Nonnie you are the best! Sat and Sun is when I noticed some new things with him and then the depression or should I say sadness hit me. He first displayed breathholding at 2 and 1/2 years and now this past weekend started holding his breath till his face turned red and almost passes out. I had read about this and was even told that this could occur by his neurologist, but seeing it first hand scares you to death. He gets lightheaded and dizzy and then it happens again and again. And nothing stops it and there is nothing to treat it and I have been told to just prepare for him to pass out and come to breathing normal again. It isn't a behavior it is just part of Rett Syndrome and I hate it. His hand movements changed again this weekend and although he continues to clap and wring his hands he now pulls them to his face in a praying position and hunches his back over like an old man. This morning he started shuffeling his feet while staying in one position and just last month started some shaky and jerky movements with his head. AAHHHH. Last night I was just filled with sadness. Sad that this syndrome is taking over his body and will continue to do so and sadness that it limits him in so many ways. We continue on this journey and make the best of what life has given him and us but there will always be sadness on some level and there will always be times when we will greive or are depressed about it. School will be here soon and I am a little anxious about sending him without a 1:1 aide considering all that is going on with him. We had two falls yesterday. The first he hit his mouth on the kitchen countertop and the second he fell backwards and hit his head on the floor. What a rough day he had. On a funny note when he holds his breath, face gets red and veins are popping out of his neck, he gets very lightheaded and will sometimes laugh while I am panicking. What a stinker!
Last week Andrew and I had a mini vacation planned around his aptmt at the Blue Bird Circle Rett Center in Houston. We visited a Granny (my aunt), and our sweet friend Stephanie in Kingwood. I wasn't sure how Andrew would do as I usually don't travel across the state without Felt or a grandparent. Andrew did well and I now know that we can plan more trips without any problems. In the past we dealt with lots of screaming and tantrums that we couldn't figure out and now we aren't dealing with those on a daily basis- so good times! During the trip Andrew did very well with potty training and stayed dry until we got to a gas station. He knew he wouldn't be able to sit on the potty comfortably at those times so he would look at me when we got in the stall and pee in his pullup so that I could quickly change him. Pretty smart!
We had a good visit with Dr. Neul and he spent 2 hours with just us. What a terrific doctor!! He discussed any concerns we had. He gave me lots of information. Some of the things I remeber now are the talk about Lexapro- an anxitey med that Andrew has been on for several months. It was originally given to him for sleeping, to help keep him asleep but really doesn't work as he gets up at five every morning. Dr. Neul said that many girls are on this med and they are unsure if it helps with their breathing and or with their rigidity. I haven't noticed it helping with either and it seems as though Andrew's hyperventilating is getting worse. He is panting a lot starting at five in the morning and it is starting to worry me. I know that if he passes out he will come to but the thought of it scares me. Dr. Neul felt like the episode I described as a seizure may have been a Rett Tremor- something that the girls do when they are in and out of sleep. He also said that we need to be massaging Andrew's fingers daily because he is crossing them when wrining his hands and eventually they could stiffen to always be crossened at rest. He encouraged us regarding a communication device for Andrew and said that he thinks the school district is silly for saying he isn't ready. As for weight and height- Andrew really hasn't gained any weight or height. A big disappointment! I really thought he had and we worked hard on it but I guess he lost what we thought he gained,. And he is only a centimeter taller. With this syndrome they have difficulty growing and their hands and feet become small. Andrew's feet stopped growing in January of 2008. It really worried me at the time but when we began to look at the possibility of Rett Syndrome it all made sense. I guess I never realized that his hands would stop growing as well. Back to square one and this time we are looking at nutritional supplements.
This past weekend Andrew got to play at his Nonnie and Dandy's house while I visited with some old coworkers from Dallas. The ladies and I drove around the hill country and went to several vineyards for wine tasting. It was lots of fun and great to catch up with friends. Nonnie (my mom) took these pictures while Andrew and I were exploring the kids room and looking out at the lake. What a sweet boy! I feel so lucky to get to be his mommy.
I haven't posted anything in awhile and I guess life got a little busy. Andrew had his real first dentist appointment and had to be put to sleep to have his teeth cleaned. They found 2 cavities! What?? We just introduced candy to him several months ago for potty training. At least they aren't his permanent teeth, right? He is very difficult to brush his teeth and screams and closes his mouth the moment he sees the toothbrush. I have to get better at this. So, what I thought would be a one hour appointment for dental cleaning took 3+ hours because he is so hard to wake up when he has had anesthesia. I rushed home from this appointment to talk to a scientist who is doing reserach on the Rett boys only to find out he wasn't interested in Andrew's case because of his Somatic Mosaicism. Aaah, a little let down. And after a 20 minute rest Andrew's first therapist showed up ready to go. Back to the grind.
We also took a family trip to Lake LBJ, where Nonnie and Dandy live. We took the Adams family with us and even our big Lucy (or as Rose likes to call her Bucy). We all had a blast and Felt and I can't remember the last time we did that much when we visited my parents. We played on the water, went tubing behind the boat, and relaxed in the sun. Andrew loved swimming in the water even though his life jacket swallowed him up. He just smiled and looked at me so sweetly in the eyes. I love being able to hold him in the water. After a day full of fun we came back to the grandparents house and while Andrew was sleeping for 20 minutes or so, he had a seizure. He hasn't had one in maybe a year., not really sure. He opened his eyes and looked so scared and was shaking all over. It lasted about a minute and seemed like forever. We haven't seen anything since then and hopefully we won't.
We continue to be busy trying to get things done for our foster/adoption license. At one point we were told July 6th we would have it but that day has come and gone and now we are looking at two weeks from now. Who knows? It is definitely a mess and I totally understand why more people don't offer up themselves and their families to do this. We are still looking at adopting a two year old boy named Felix. He was taken off the adoption website and after asking several people it seems that his caseworker is waiting for us to get our license. He is absolutely adorable and although we have never met him Felt and I feel like we have some kind of connection to him. I know it seems silly but at night I sit and wonder about him. I wonder if he has a foster mom or dad in his group home. I wonder how the other 12 kids in his home treat him. I wonder who tucked him tonight and did they say a prayer with him or read him a book before bed. Aahh. A lot of family and friends have asked us why we don't just have another baby than go through all of this and why on earth we would want to adopt a child with special needs. I don't have the best answer for the question but here goes... We have always wanted to adopt a child. When Andrew was diagnosed with autism and then Rett Syndrome we considered never having any other children ourselves. We were introduced to an awesome family who had adopted a child from CPS and had another friend starting the foster process. Our interest began to increase and we saw a need. We took the parenting classes, a requirement for the foster/adoption license. We knew this is something we wanted to do and started the process. All while we were not thinking of special needs children. The more we read about the children that were available and their needs, the more our hearts began to open up. When we saw Felix and a description of his needs we thought- that's nothing and we can handle that. Some people have questioned if he or another child we might would adopt would have ongoing medical problems or learning problems. Our response to that is -don't we all have ongoing problems? Who is really ever perfect anyway? I think our home and our family is set up much better than most for a child with special needs and we already know so much about the medical community here in town and around the state. So, the whole situation really is in God's hands and we can still have more biological children in the future if we choose to. I'm not too old yet!
Next week Andrew and Mommy are taking a week vacation for doctor's appointments in Houston and visits with friends and family throughout east Texas. I am a little nervous to have him away from home that long but also excited to see how he does. It's time he deserved a break from all of the therapy. Too bad we can't get a break from the heat!
Andrew's hand movements have always changed since he turned two. At first he started putting his hands behind his back and everyone at daycare thought he had such good manners when he walked in the hall. It then moved to the front where he held his left hand in his right. Within months he started to wring his hands scraping fingernails across the inside of his right palm causing blisters. Then it changed to where he would pat everything in his environment one or two times and then wring his hands. We were a worried about this but thought that at least he was exploring toys and other things through patting. He loved to pat our trashcan and hear the sound it made and because he loves music he broke his boom box several times by patting it so hard. At Christmas last year he started to clap his hands. My parents were excited about this and I got worried knowing it wasn't a real clap of happiness for him. He would clap his hands sometimes ten times and then wring them tightly. The past few months the clapping has quieted and he isn't able to make quite the sound with his hands that he first had. He now claps his hands and turns them to a wringing position and then pulls them apart on his face which just gets yucky when he is eating or is snotty from throwing a tantrum. We have also noticed that his fingers are starting to get mis-shapen over the past few weeks. He crosses his index finger under his middle finger on both hands while wringing and clapping. And the wringing is constant-all day sometimes right along with teeth grinding. This is the one that kills us! It really grosses me out and he no longer stops when we tell him to.
This past week we learned of some problems with his MDCP program- this is the one that provides the attendant for him. Apparently he now has to have an adult -myself or spouse or grandparent while a provider is here. Which doesn't help me out at all. Not sure what we will do but essentially I have to quit working or find a babysitter quickly. Here we go again!!
We are one step closer to getting our foster/adoption license. What a process it has been. We learned last week of a two year old boy that is available for adoption that has some special medical needs but overall just a little delayed developmentally. We talked with his caseworker and are hopeful that we can get more information on him. He is adorable and we both think he would be a great addition to the family. We have prayed about it and know it's in God's hands if it's meant to be.
What a week it has been! Andrew's last day of school was yesterday. He is really ready for a break. Apparently he cried for the 3 hours of school and for the last 2 weeks has refused to walk down the hall to class or from class out to the car. It's very frustrating for his teacher and myself because we know he can walk and we want him to use those legs as much as possible. The more he walks the better off he will be in the long run.
This week I talked with another mom of a boy with Rett Syndrome. Her sons name is Luke and he is 6 years old. They found out a year ago that he had a MECP2 mutation as well and was diagnosed with Rett Syndrome. His mom and I talked on the phone for an hour and half. It was so nice to talk to someone who understood where we were coming from and it was good to feel like we aren't in this alone. Their journey with this syndrome has been a lot more difficult and Luke has encountered feeding tubes, vision difficulties, seizure disorder, and a ventilator to help him breathe. His mom is so good and has a great outlook on things and Luke is adorable. What a neat family and I just wished we lived closer.
Since Andrew's diagnosis in November I have searched for other boys with the diagnosis and been in contact with 5 here in the US. One mom that I have been in contact with the most has a son who is 23, and the others are all younger than 10 years. They are all different in many ways but most of them have tracheostomies, are G-tube dependent and some are on a ventilator. In the beginning every thing I read stated that the boys with Rett Syndrome died in infancy but I am finding that this is not always the case. There are boys with Rett syndrome and although there are few they are still a part of this terrible disease. I know there will be a cure someday and there is research being done to help these boys and girls. Thank you Rett Syndrome Research Trust you have given me a lot of hope!!
In talking with other families Andrew's mutation is different than any of the boys and girls. Initially I thought he had 2 X chromosomes and a Y. Andrew has somatic mosaicisim. Not really sure what it all means, even though it has been explained 10 times to me. I just don't get genetics and probably never will but here is the definition.
Somatic mosaicism -- the presence of genetically distinct populations of somatic cells in a given organism -- is frequently masked, but it can also result in major phenotypic changes and reveal the expression of otherwise lethal genetic mutations.
Andrew is more like the girls with the syndrome than the boys. His progression of hand movements and going through the regression stage as well as most of the other clinical features. We always knew he was a special little boy and are just thankful that he continues to do well overall.
One yea for the week- we have had several contractors come out to look at a remodel for his bathroom. We are thinking long term for him and looking at making the bathroom handicapp accessible and having a roll in shower. He may not ever need a wheelchair but just in case that happens it would be nice to have the bathroom ready for him. I think it would help us out now too in that we are needing a reclined bath chair and need the tub taken out. His bathroom is really small and the more room we have the better so we can continue to work on potty training. When you have 2 adults and Andrew in there it gets kinda tight and we have had several accidents already. We are still thinking about it but it is really wonderful that the Medically Dependent Children's Program in Texas pays for things like this.
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
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.
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.
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.
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.
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!
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!
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.
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.
First of all, thanks to all of the Rett moms who continue to make comments to this blog. You will never know how encouraging and helpful your words and your own blogs are to me and our family. You are awesome and really inspire me to do more for our Andrew. What a blessing to have your support.
For a long time I have thought that Andrew might never be potty trained and that at the age of 25 I would still be changing his diapers, yuck! When we were in Vegas I decided to get him an M&M candy dispenser for the bathroom to work on potty training. I have sat him on the potty off and on since he was 18 months with little to no luck. I really decided this weekend to aggressively attack the issue and sit him on the potty every hour and rewarding him with candy when he did go. He loved it! On Monday he went all 6 times even when he didn't need to go. He would look at the candy dispenser, look back at me, and then look down and pee-peed. YEA!!!!! He got so excited looking at the potty and candy machine that he fell and hit his head on the tub while we were trying to brush teeth. Now that is excited. So yesterday I decided no more diapers and to just wear pull ups during the day hours. The problem occurred when his attendant came over and suggested that he doesn't do it with her and he has no way to communicate that need to go. I got soooo frustrated and told her nicely that if we get him on a routine scheduled potty time he will get his body adjusted to it and will go. She blew me off and put him in a diaper. You can imagine my frustration with this. He is a smart boy. He may have Rett Syndrome but he is in there and he totally understands what we are asking him to do. He went everytime within 2 minutes of sitting him on the pot. When you are on a roll with something like this you don't want to lose momentum and I really felt like we were losing it yesterday. So, back to square one on the job issue. I am now thinking of going back down to 2 days a week so I can give him more of what he needs. If she doesn't believe in him on this then she probably isn't trying to challenge or help him in other areas including the weight gain. ARG!!!!
I had a phone conversation yesterday with Andrew's GI Dr. Motil. After discussing his difficulties with swallowing and chewing as well as getting his weight up she brought up the topice of a G-tube. It is taking us a lot longer to feed him- used to be 30 minutes for a meal but now taking 45-60 minutes. He is showing signs of penetration and aspiration by coughing after swallowing solids and liquids. She wants Andrew to gain a pound every month and is concerned that he is not getting what he needs due to the GFCF diet. I told her we would do everything we could to get him to gain weight including taking him off the diet. I am praying that we will not have to face a G-tube placement and I would really feel like I let Andrew down if that happened. If I can't help my own son then I definitely can't help others work their feeding problems out. Hopefully in a week I can introduce him to Pediasure and Carnation Instant breakfast. We'll see. I have started doing Vital Stim therapy on him to help with swallowing issues and hopefully we will see some changes in the next couple of months. He is a difficult patient and I can imagine how hard it was for the speech therapists who did this with him in the past.
For those of you who don't know yet, we have decided to become foster/adoptive parents. We are currently taking Pride parenting classes and will have a home study as well as home inspections soon. Once completed we will be ready for our first placement. We always wanted more children in our family and we feel that we will really be able to help some little folks. Although Andrew's care is some what demanding at times we know we have room in our hearts, home and family for more children. We will be fostering to adopt a child and are very excited. There is always a possibility that we will have to give a child back to their birth parents and while that is scary, I trust God and his will for our lives. Please pray for our family and for the child that will come to us.
Vegas was super fun and had to include a picture of us outside the Love-Beattles show.
We are leaving for Vegas today to see some family and to have some fun on the strip. Andrew is staying behind and will be getting lots of love and spoiling from his grandparents here at our house. Hopefully the dogs can survive. I am so thankful for this time to get away and have fun with Felt. We haven't traveled without our Drew-Drew in years. When he was 5 months old we went on a ski trip to Colorado for a couple of days in spring break. When we returned home after picking him up from grandparents he wouldn't wake up the next morning. After watching him listless and continuously vomiting, and waiting 5 plus hours in the ER the doctors found he had intususception, where his small bowel collapsed on itself. Thank goodness for the doctor who knew about this as they had already prepped him for a spinal tap, thinking it was meningitis. He had a hospital stay for several days healing from a procedure to correct and it was a very scary time for us. I know that God has taken care of our son and will continue to do so, but it is hard leaving him again. We hope to plan a trip in the next couple of months where he can go and enjoy a vacation too. Maybe the IRSF annual conference in Virginia? Maybe!
We are back home and racing through another week. Our trip to Houston was a good one and we got lots of good information from the Rett Clinic. Dr. Neul, Andrew's neurologist, says that he is one of 6 or 7 boys in the world with true Rett Syndrome. Can you believe that? He is such a special angel! He gave us some good information regarding therapies and prognosis for Andrew and wanted to include him in a research study. Andrew's GI doctor wants him to gain half a pound each month. He is too thin, but we feed him all day. Go figure! One big word we learned was retropulsion. What a cool word. This is the swinging back and forth motion Andrew does with his upper body. Andrew was such a trooper and even got over the fact that the dentist was an absolute jerk to him. He didn't even aknowledge Andrew and referred us to other dentists here in town. I will be writing a letter on this one. What a wierdo!
I am officially Vital Stim certified and true believer in it. I am planning on purchasing my own unit for Andrew as I believe it can and will help him again with swallowing. My first patient using it will be today.
We are still fighting the everyday battles with having a child with a disability. I have been on and off the phone with the insurance company and with medicaid this morning. We have insurance as a primary and medicaid for Andrew as secondary only based on his disability. Even though we have this I can not get him speech or physical therapy. I am frustrated. No one takes our insurance for home health therapy and none of the clinics listed as providers work with pediatrics. What a mess! It's almost as if we should have never gotten insurance for him, but then he wouldn't get ABA. AARG! The fight is on for this one! I have cried and now I need to press ahead.
Some tough moments for me as mom this week were reading a past favorite book to Andrew before bed. The book is called Hug and this was Andrew's favorite book from 12 to 18 months. It's about a monkey that goes around the jungle watching all the other mamma's with their babies hugging, and the monkey comments 'hug' on each page. Andrew's favorite parts were when the monkey cried and when he saw his mom. "Mama, Bo-Bo.....hug." Andrew sat with me but didn't look at the pages and was more interested in wringing his hands than anything. That was a hard moment for me. I cried for a good while and realize that although I wouldn't trade this Andrew for anything, I miss the little boy that we once had. Looking back at photos of him as a baby- it's just not the same child and I really miss all the things that he could do- even the smallest things like hold the remote in his hand, and turn the pages of a book.
One other thing that is bothering me this week- Dr. Neul says that 1/3 of children or girls with Rett Syndrome, now including Andrew, die from an unkown cause. That means that it wasn't complications with scoliosis, pneumonia, or a heart condition. Unknown! I put this out of my mind until Felt brought it up this week. It terrifies me and I am praying for peace and to let that thought go.
I didn't want to post about this but I know I need to. We had an ARD on Friday and Andrew's one on one aide was removed from the picture. The special ed coordinator made a lot of great arguments as to why he does not need one. I don't want him to have an aide unless necessary and I didn't and still don't know what to feel. I discussed our frustration with a lack of progress being made in school and they suggested summer school as well as a teacher conference regarding goals. I left the ARD crying and feeling like somehow I have let Andrew down, like I didn't try hard enough for him. Ofcourse I could call an ARD meeting anytime and argue with them, I just struggle with knowing if he really needs the assistant. They assured me the ratio in the class will still be 1 teacher or assistant to 2 children and that does make me feel good. We are leaving at 4 tommorrow morning to head for Andrew's aptmt at the Blue Bird Rett Clinic in Houston. We will be their for 2 days for aptmts with neurology, GI, and dentist. Maybe they can help me see things clearer and I just pray that they will be able to help us as I sometimes feel like all the aptmts don't tell us much. As for the job situation, my current position is going to counter offer, so I still don't know what to think, regardless of how much either is willing to pay me. Money isn't everything and I just want Andrew to be ok, which I know he will. Please pray for peace in both situations and for some rest, lately I am feeling a little stressed. I will try to post more when I get to Dallas for my training, and thank you Dad for taking Andrew all the way back to San Antonio, you are the best!
When I started out 7 years ago as a therapist I would never have imagined that my life would be so intertwined (is that a word?) with my profession. I have heard time and time again "oh- than you really know what to do with Andrew". As if it makes our situation much easier. It doesn't, but it has helped in a lot of ways. I have had the knowledge base on developmental disorders, theories of therapies, and understand what strategies should be implemented. Some things have been easier for us and some things have been harder. One of those being the knowledge of what Andrew needs in terms of therapy and how to demand from agencies and schools that he receives the proper treatment. I still have a hard time with comparing him to other children that I service. Last year when I started working part time with home health I got a patient that was 1 month younger than Andrew. I immediately started comparing gross motor skills, play skills, etc. Not really healthy for me to do but I still have a hard time with this as all of my patients are between the ages of 6 months and 4 years. It has helped me professionally with families to be able to relate to their situation, make referrals to doctors and specialists and to tell them what has worked for us. There was a time last year that it was all too much, and I wasn't sure if I could continue being an SLP. There was a lot of sadness for me and for Andrew and all that he lost. Part of the grieving process I guess. But working with my patients made me feel even more sad at that time for all the struggles that they and their families faced. I guess I have gotten past some of this sadness. Just the other day I had a new patient -2 years old, hasn't been diagnosed with Autism yet. After working with her for 5 minutes I was able to get this sweet little girl to sign more to request an activity. Her parents cried as she is nonverbal and has no way to communicate with them. This one session made my day and made me remember why I am a speech pathologist. I really do love my job and I love my patients. I feel very blessed that their families let me in their lives and let me enjoy them every week.
I was unexpectedly offered a position this week with an Early Childhood agency here in town. It is actually the Brighton agecny that came and saved the day for Andrew with the last 6 months before school started. It would be a full time position and the pay would be a lot more than I make now. Money is not everything to us but it could definitely help out. Please pray for us as we make a decision on what is best for our family. Our top priority is Andrew and we are thankful that his new attendant is really working out well.
1 more week until Vital Stim certifited! Can you tell I am excited??
For the first time in a while I cried today. After I picked up Andrew from school I waited for an attendant to show up to care for him so that I could get back to work. We have had the same attendant all week who has been wonderful and expected her to show up again today. Nope, didn't happen. Instead I opened the door to a 50 year old woman with no teeth, and cigarrette smoke wreaking out of the pores of her skin. No teeth, can you imagine....I mean really. She was wearing skin tight workout pants with a scrub top which didn't go well on her overweight body. I was immediately disappointed and left wondering what to do about my busy afternoon schedule. After showing her around and going over everything I sat for about 20 minutes trying to inhale a quick lunch. She was really loud and flamboyant and started apologizing to me for smelling like smoke. She said she sprayed down with Febreeze when she got out of the car. What? Is that even for your clothes? I thought it was for furniture, maybe I'm wrong. Then she tells me she lives with a 33 year old man, what??? What would a 30 year old man be doing with someone with no teeth? I know my mother is thinking right now to hold up, and be the Christian woman that I am, but folks, really? Would you leave your precious child with such a person? Once she started talking she didn't stop and our two dogs were going crazy smelling her- which they never do to people that come over. Maybe she was smoking something else.....I don't know. I quickly got in the car, saw one feeding patient and then came home. I had already called the agency to let them know that I didn't want her to return to our house again and that the cigarrette smoke was unacceptable. When I returned home she was on her cell phone talking very loud. Apparently the agency had already called her to let her know I had complained. She started again with the apologies and told me she had been smoking since she was 11 and was trying to quit. I told her "wow, yeah, that must be hard." In my head I was thinking - what 11 years old, that's like 5th grade, where was your mother and what was she smoking? And how is that my problem? ARGH!! I hope God will forgive me because I lied and told her my her patients canceled and that I was taking Andrew to the zoo. Honestly, I didn't know what to say to her. I felt so sick to my stomach leaving Andrew here with her that all I could think about was getting her out of the house very quickly. So, now that I have canceled the rest of my patients I am actively looking for that special angel to take care of our angel.
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.