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!
Thursday, April 23, 2009
Sunday, April 12, 2009
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.
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.
Friday, April 3, 2009
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.
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.
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