We were back and forth from our house 3 times yesterday! I get absolutely worn out on these kinds of days; making sure I have everything I need (diapers, snacks, etc..)gathering the children up, getting them in the car, getting them out of the car and safely into wherever we are going. I have scaled back our participation in activities this winter and spring because I find just getting out to be exhausting.
Our morning consisted of getting Samuel to school and then going to our pediatrician's office (20 miles away) for the baby's 15 month check up and an ear infection follow up for my youngest son. We do have to travel a bit to get to the doctor, but it's worth it. Our pediatrician and his staff run a very efficient office and the waiting time is short. Sometimes there is almost no wait at all! This makes it very helpful for Samuel. There is no way that he could have waited as long as we used to have to at our former doctor's office. I can take Samuel to our present doctor for appointments and can take him along for other children's appointments quite easily. In the past year and a half my husband has worked close to this office as well, so sometimes he meets me there to help out.
My youngest son then had a birthday party to go to early in the afternoon. We didn't have Samuel with us when we dropped him off but I knew he would be with us when we picked him up. That can be a problem. Samuel (naturally) would want to go into the house. Once in there he would probably get into things he shouldn't and it would be very difficult to get him out. I determined ahead of time that NOONE but my youngest son would go in.
We also had about an hour to kill after we picked up Samuel from school before it was time to get his younger brother. What to do? The library was a possibility, but after all the activity I endured earlier in the day I just didn't know if I would be up for that. I decided to go to the grocery store instead. Samuel can endure short trips there because he knows that there are videos and DVDs for sale and he can look at them.
I did not have a visual schedule for our afternoon and I had not made Samuel aware earlier in the day that we wouldn't be going directly home. However, after we left the school I pulled to the side of the road and we took a few minutes to talk about what we would be doing before going home.
We got through the aisles of the grocery store without too much difficulty, except that he kept trying to "Scottish Irish Dance" (from "The Upside Down Show"). He got to look at DVDs for a few minutes and nicely accepted finishing that. Then, on the way out of the store there were 2 more unexpected DVD displays! It was quite difficult getting him to pass those by, but we were able to do so because of the promise of a trip to McDonalds for a snack. We spent the second half of our hour there. I have to admit part of the reason it was easier to get around was because my youngest son wasn't there, he can be rather ornery and feisty!
As we pulled up to the house to pick up my youngest son, Samuel really wanted to go inside, but he was able to accept "not this time." I think it helped that my oldest son voiced that to Samuel as well (impressive because my oldest son has friends at that house too and I'm sure he wanted to go in as much as Samuel did!). Even my youngest son nicely accepted that it was time to go home.
I was so happy to get home! We went through the usual evening madness of dinner and homework, and I ended up falling asleep before the boys did!
Wednesday, March 7, 2007
Monday, March 5, 2007
Mentally Retarded vs. Developmentally Delayed
Last fall I took Samuel for an intake evaluation, part of the application process for what is called the "Individual and Family Medicaid Developmental Disabilities Waiver" for the State of Virginia. Once an individual is determined to be eligible for this they get put on a several year waiting list and then when services are approved the family is eligible for funding to assist with day-to-day needs. This will be very helpful to my family once the help we currently have is no longer available to us.
The intake consultant filled in some paperwork with us, completed a level of functionality assessment, and I left her with some papers from a 3-year evaluation that had been done by our school system for Samuel the previous fall (2005). I got a phone call a few weeks after that saying that Samuel was not eligible for this waiver because some test scores showed that his IQ was in the range of being considered mentally retarded. There is a separate waiver for those considered mentally retarded. I just received written notification of this last week and I have 30 days to make an appeal.
I'm not one to get all hung up on diagnoses or labels, but I do plan to appeal this decision. I want to make sure that we obtain assistance for Samuel in the correct way. I question whether the low test scores do indeed indicate mental retardation. The psychologist who tested him mentioned that she often could not understand his speech. There was also a large discrepancy between his verbal and non-verbal test scores and the psychologist stated that "results should be interpreted with caution." This seems like a very narrow circumstance to then apply a diagnosis of mental retardation. This all brings to mind what I am currently reading in Unstrange Minds: Remapping the World of Autism. In getting funded assistance for our children we are very much tied to the labels and diagnoses they are given, and these can be open to personal interpretation.
A friend of mine referred me to a consultant who coordinates state-funded assistance for her family. I explained my situation and am waiting to see what she thinks of this. I'll keep you posted as to the outcome.
The intake consultant filled in some paperwork with us, completed a level of functionality assessment, and I left her with some papers from a 3-year evaluation that had been done by our school system for Samuel the previous fall (2005). I got a phone call a few weeks after that saying that Samuel was not eligible for this waiver because some test scores showed that his IQ was in the range of being considered mentally retarded. There is a separate waiver for those considered mentally retarded. I just received written notification of this last week and I have 30 days to make an appeal.
I'm not one to get all hung up on diagnoses or labels, but I do plan to appeal this decision. I want to make sure that we obtain assistance for Samuel in the correct way. I question whether the low test scores do indeed indicate mental retardation. The psychologist who tested him mentioned that she often could not understand his speech. There was also a large discrepancy between his verbal and non-verbal test scores and the psychologist stated that "results should be interpreted with caution." This seems like a very narrow circumstance to then apply a diagnosis of mental retardation. This all brings to mind what I am currently reading in Unstrange Minds: Remapping the World of Autism. In getting funded assistance for our children we are very much tied to the labels and diagnoses they are given, and these can be open to personal interpretation.
A friend of mine referred me to a consultant who coordinates state-funded assistance for her family. I explained my situation and am waiting to see what she thinks of this. I'll keep you posted as to the outcome.
A Real Day of Rest!
For the first time in many many weeks I didn't worry about coming up with a schedule for Samuel on Sunday. My husband and oldest son were away for part of the day, so we did not go to church together in the morning like we usually do. Samuel did get a bit agitated in the morning over his videos and it took me a while to calm him down. That's not an easy thing to do when I don't have my oldest son to help out, but my youngest son was able to keep the baby company while I dealt with Samuel for 15 minutes or so. Other than that Samuel kept himself suitably entertained the rest of the day. He likes to go back and forth between playing on the computer, playing and watching Playstation, and playing with cars and trains down in the playroom.
I enjoyed not having the pressure of getting "work" together for him, which I've felt I needed to do every day for some time now!
I enjoyed not having the pressure of getting "work" together for him, which I've felt I needed to do every day for some time now!
Saturday, March 3, 2007
Welcome Break from the Afternoon Grumpies
Early yesterday afternoon a friend called me and said that a group of people was going to meet at the park. I told her that we wouldn't be going because I thought it was going to be too wet. I knew that it had gotten quite warm outside but I honestly didn't realize just how nice it really was until we left the house to get Samuel. Of course I didn't tell the other boys about the invitation that I had declined because they would have been beyond disappointed!
After we picked Samuel up and were on the way home my car just decided that it was going to steer itself over towards the park! My oldest son had his nose in a book so he didn't notice the different route we were driving, but my youngest son picked right up on it and started saying "where are we going?" "let's go to the park!" Sometimes I do drive that route so we can see how high a particular creek is running, so I'm sure the boys wondered what I was up to. At the last second I said "okay, let's see who might be at the park" and I turned in. Our friends were there and my boys were very happy to know we would be staying a while.
A group of us has gathered together, as weather has permitted, at this park for 5 1/2 years now. We call it "play group", and it has been fun to have the kids get together. This is also vital gathering time for the moms too! Our families have grown considerably over the years and the ages of the children playing are from the early teen years down to newborns. Sometimes just one or two families are there and other times there can be as many as maybe 8 - 10 or even more families (usually in the summertime when we gather more regularly).
Our ability to go to play group has been limited the past year and a half because of Samuel's uncooperativeness. He started wandering off from the field where we gather. There is a creek nearby that Samuel is attracted to and I don't like to take any chances. We did not go very much last spring between that and our baby being so young. This summer and fall we had an in-home helper on the day we go to the park so we were able to attend regularly. I took a big chance by going to the park yesterday without an in-home helper. I put my oldest son on notice that I may need his help and I spent the entire time watching Samuel like a hawk. I also told them we would only stay for 45 minutes.
It didn't even hit me until we got back home, but Samuel did better than I could have even imagined! He did walk around the edges of the play area most of the time (he told me later that he was playing "Daytona 500") but he kind of hung out for a short while with the other children who were having races. Never once did he wander from the play area and best of all he did not expect to take a walk over to another area of the park as he usually does with our helper. I took a few minutes to help Samuel jump on something in the playground area, and I was able to help my youngest son on the swing for a few minutes too. It was great to talk with my friends for a few minutes too, the bad weather has kept us from getting together as regularly as we had been last fall and early winter.
We ended up staying for an hour and a half, the boys all accepted leaving nicely (I "counted down" before time to leave), and Samuel's good mood lasted most of the evening!
A great day all around for the boys!
After we picked Samuel up and were on the way home my car just decided that it was going to steer itself over towards the park! My oldest son had his nose in a book so he didn't notice the different route we were driving, but my youngest son picked right up on it and started saying "where are we going?" "let's go to the park!" Sometimes I do drive that route so we can see how high a particular creek is running, so I'm sure the boys wondered what I was up to. At the last second I said "okay, let's see who might be at the park" and I turned in. Our friends were there and my boys were very happy to know we would be staying a while.
A group of us has gathered together, as weather has permitted, at this park for 5 1/2 years now. We call it "play group", and it has been fun to have the kids get together. This is also vital gathering time for the moms too! Our families have grown considerably over the years and the ages of the children playing are from the early teen years down to newborns. Sometimes just one or two families are there and other times there can be as many as maybe 8 - 10 or even more families (usually in the summertime when we gather more regularly).
Our ability to go to play group has been limited the past year and a half because of Samuel's uncooperativeness. He started wandering off from the field where we gather. There is a creek nearby that Samuel is attracted to and I don't like to take any chances. We did not go very much last spring between that and our baby being so young. This summer and fall we had an in-home helper on the day we go to the park so we were able to attend regularly. I took a big chance by going to the park yesterday without an in-home helper. I put my oldest son on notice that I may need his help and I spent the entire time watching Samuel like a hawk. I also told them we would only stay for 45 minutes.
It didn't even hit me until we got back home, but Samuel did better than I could have even imagined! He did walk around the edges of the play area most of the time (he told me later that he was playing "Daytona 500") but he kind of hung out for a short while with the other children who were having races. Never once did he wander from the play area and best of all he did not expect to take a walk over to another area of the park as he usually does with our helper. I took a few minutes to help Samuel jump on something in the playground area, and I was able to help my youngest son on the swing for a few minutes too. It was great to talk with my friends for a few minutes too, the bad weather has kept us from getting together as regularly as we had been last fall and early winter.
We ended up staying for an hour and a half, the boys all accepted leaving nicely (I "counted down" before time to leave), and Samuel's good mood lasted most of the evening!
A great day all around for the boys!
Dr. Seuss's Birthday Celebration at School
I received notice from Samuel's inclusion teacher earlier this past week that his class would be celebrating Dr. Seuss's birthday on Friday with a reading activity. They would be allowed to bring in a pillow, a snack, a drink, and a few books to look at. They would be taking time out from class to have some relaxed reading time. I found out the night before that they would also be reading to a kindergarten class.
As I was gathering the necessary things for Samuel to take Thursday evening I asked him a few questions about the snack he wanted to take and he joined right on in getting everything together! It was such fun seeing him interested in an upcoming event at school. When I asked him about the snack he told me he wanted peanuts and apple juice. We decided that he would take his bean bag chair and he asked to bring a blanket as well. I talked him out of bringing the comforter for his bed and he accepted taking an oversized flannel baby blanket. He also wanted to take a stuffed animal, so we found a nice squishy one. They were told to bring "a book or two," he wanted to take 5 and ended up taking six, all Dr. Seuss books! He proudly carried in his things to school yesterday morning.
We heard a "Hi Samuel!" as we were walking in. A boy walked in from the parking lot and joined us in the hallway. Samuel, with a smile on his face, said "go away". He gets excited when something unexpected like that happens, I need to review his social stories about greetings and how to respond! I finally got Samuel to return the hello and then I talked to him. He told me his name, which sounded familiar from a few school years ago. "Were you Samuel's computer buddy in kindergarten a few years ago?" He indeed was and he is in Samuel's class this year. He said that he likes to help Samuel. I thanked him for that and told him that Samuel has two brothers who help him also. He said "I know, I saw you in the grocery store last year when I was with my Mom." (Then I remembered him saying hello there also)
Samuel does seem to be pretty well-liked by his classmates. His teachers have told me that other students pitch in to help him. Samuel does not usually respond to them very much, though I think he does respond much more now than he did a few years ago. I have thought about asking the teachers what they tell the other students about Samuel and the other autistic boy in their class. One time I mentioned (in an e-mail) a book to share with the other children about an autistic classmate and the teacher never responded to being interested in it. Something I'm going to have to inquire about.
Our dialogue when I picked Samuel up yesterday afternoon was something like this:
It was great to have Samuel in a good mood after school!
As I was gathering the necessary things for Samuel to take Thursday evening I asked him a few questions about the snack he wanted to take and he joined right on in getting everything together! It was such fun seeing him interested in an upcoming event at school. When I asked him about the snack he told me he wanted peanuts and apple juice. We decided that he would take his bean bag chair and he asked to bring a blanket as well. I talked him out of bringing the comforter for his bed and he accepted taking an oversized flannel baby blanket. He also wanted to take a stuffed animal, so we found a nice squishy one. They were told to bring "a book or two," he wanted to take 5 and ended up taking six, all Dr. Seuss books! He proudly carried in his things to school yesterday morning.
We heard a "Hi Samuel!" as we were walking in. A boy walked in from the parking lot and joined us in the hallway. Samuel, with a smile on his face, said "go away". He gets excited when something unexpected like that happens, I need to review his social stories about greetings and how to respond! I finally got Samuel to return the hello and then I talked to him. He told me his name, which sounded familiar from a few school years ago. "Were you Samuel's computer buddy in kindergarten a few years ago?" He indeed was and he is in Samuel's class this year. He said that he likes to help Samuel. I thanked him for that and told him that Samuel has two brothers who help him also. He said "I know, I saw you in the grocery store last year when I was with my Mom." (Then I remembered him saying hello there also)
Samuel does seem to be pretty well-liked by his classmates. His teachers have told me that other students pitch in to help him. Samuel does not usually respond to them very much, though I think he does respond much more now than he did a few years ago. I have thought about asking the teachers what they tell the other students about Samuel and the other autistic boy in their class. One time I mentioned (in an e-mail) a book to share with the other children about an autistic classmate and the teacher never responded to being interested in it. Something I'm going to have to inquire about.
Our dialogue when I picked Samuel up yesterday afternoon was something like this:
Me- How was your reading day?
Samuel - Good. I took my socks off!
Did you have your snack?
Yes. I ate all my peanuts.
Did you read to the kindergarten class?
Yes. I read Hop on Pop and _________________.
(Can't remember the other title )
It was great to have Samuel in a good mood after school!
Friday, March 2, 2007
Afternoon Grumpies!
Our in-home services staff wasn't able to come today, her car broke down. I discovered it 15 minutes after she was due to arrive (she had left a phone message before we got home) and was in the middle of trying to keep Samuel calm. Quick change in expectations for the afternoon!
Every day when Samuel gets home he has 4 or 5 things to complete on his visual schedule, all related to putting his coat, backpack away, using the toilet, and then getting to have a snack. On days that our in-home person is here, he then has 3 more hours of activities (including a good bit of unwind time!). On days they are not here, I usually let Samuel play for about 2 hours and then I try to squeeze in a bit of homework before dinner time.
There was a time when Samuel rushed through these first few tasks, eager to get his snack. That hasn't been the case lately. He tries to hide in my husband's home office and looks at his videos. Today I had put the videos away, and he was angry that we hadn't picked up any new videos at the library (we went while he was at school). I spent the first hour we were home today helping him take several breaks. I had really hoped to clean up a bit around here, but I wanted Samuel to know that I wasn't going to put up with him being so cranky so I helped him take several breaks in a row, in which he got explanations from me about how he needed use a calm voice and have "calm hands and feet" to be able to stay downstairs. He finally settled down early in the evening.
Samuel has been asking us to repeat sentences. I used the promise of repeating a sentence as an incentive for him during his homework today! He says "Can you say 'You can't watch Cyberchase on TV because you get too upset? ' " After I do repeat him he says "I don't get too upset when I watch it on DVD"
Every day when Samuel gets home he has 4 or 5 things to complete on his visual schedule, all related to putting his coat, backpack away, using the toilet, and then getting to have a snack. On days that our in-home person is here, he then has 3 more hours of activities (including a good bit of unwind time!). On days they are not here, I usually let Samuel play for about 2 hours and then I try to squeeze in a bit of homework before dinner time.
There was a time when Samuel rushed through these first few tasks, eager to get his snack. That hasn't been the case lately. He tries to hide in my husband's home office and looks at his videos. Today I had put the videos away, and he was angry that we hadn't picked up any new videos at the library (we went while he was at school). I spent the first hour we were home today helping him take several breaks. I had really hoped to clean up a bit around here, but I wanted Samuel to know that I wasn't going to put up with him being so cranky so I helped him take several breaks in a row, in which he got explanations from me about how he needed use a calm voice and have "calm hands and feet" to be able to stay downstairs. He finally settled down early in the evening.
Samuel has been asking us to repeat sentences. I used the promise of repeating a sentence as an incentive for him during his homework today! He says "Can you say 'You can't watch Cyberchase on TV because you get too upset? ' " After I do repeat him he says "I don't get too upset when I watch it on DVD"
Thursday, March 1, 2007
Late Night Again!
The timing of dinner and getting Samuel's homework done was about the same last night as it was Tuesday night! My excuse for last night was that we had our in-home services person here until 6:30, and I didn't get a good start on making dinner (I had to finish up a math lesson with my oldest son). Good things about running late are:
- I'm able to get the baby to sleep for the night soon after dinner and then it's easier to focus on Samuel's homework. When baby is awake it's just a matter of getting either my husband or oldest son to watch her, but by that time of the evening she is usually fussy and she makes it her mission to find me, which means husband and big brother either have to chase her or confine her in the playpen!
- Samuel's internal clock just seems to run later into the evening than a neurotypical child, so a late bed-time isn't all bad for him.
Samuel has been getting quite cranky late in the afternoon. This has been happening both on days that our in-home person is here and days that she's not here. We're trying to teach Samuel to "take a break" when he has trouble controlling his temper. The challenge is that his break area is up a flight of stairs to his bedroom and he often fights getting up the stairs. We have to try to keep his pathway up there free of things that he can push down or throw and younger siblings have to steer clear as well! We have to prompt him to take the breaks right now. While he is working with the in-home services person he often asks to take a break but sometimes he has to be prompted then as well. Samuel is going to be big and tall someday so we want to teach him as many ways to regulate his temper while he is still a cute lil' youngun!
I only bothered with a 2-question worksheet about Abraham Lincoln for homework last night since it was so late and Samuel complied very quickly!
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