Today I was part of the school staff beginning of the school year in service. I'm not sure how many were in attendance, but I do know that I made up 70 folders and I didn't come home with any.
I came away from the training feeling like it went well. Despite being scheduled for only 30 minutes, I think I was able to cover a lot of ground. The folders I gave them had lots of information, including some websites and books they might be interested in.
It was very difficult for me to choose what to cover in those short 30 minutes. I tried to give them a few strategies, but every time I gave one, I'd say "but this might not work tomorrow" or "it may work for Johnny by not Jane." There are no "cookbook answers" for FASD. Just like the Autism Spectrum, no two children with an FASD will be identical in their needs. Wouldn't it be nice if there were the case?
I also had the opportunity to me Thomas' new teacher. I think Thomas will like her, even if he does make fun of her name. I really can't figure out his need to do that. Of course, I remember making fun of a few teacher's names when I was growing up too. So....the daily question: Is this typical, or is it related to FASDs?
Thursday, August 27, 2009
Monday, August 24, 2009
A busy week ahead
This will be a busy week for this Stay at Home Mom who never stays at home.
Today will be spent doing the mundane household "stuff." You know, laundry, dishes, stuff like that. I'll also be prepping for Thursday.
Tuesday, I'll be co-presenting a 4 hour training on Advocacy. I'm looking forward to this because I'll be able to give some concrete examples, based on personal experience. It won't be just the list in the power point. It's become REAL to me in the last year. I love that I'll be able to drive down Highway 63. It's one of the pretty drives closeby.
Wednesday I'll be at the board meeting for the New Day Shelter. I rececently became a board member for that. I'm looking forward to this, since it's an important issue, but doesn't hit quite as close to home as the FASD issues. It truly lets me take some focus off of US and onto helping others in a good way. I figure I can get the word out about the services the shelter provides, and hopefully find some people willing to support it $$$-wise.
Thursday, I'll be conducting an inservice for the local school district. The up side is I'll have a captive audience that will include all school staff, and not just the teachers. The down side is I only have 30 minutes to get some good information to the staff. I'll be going back later in the school year for more in depth information, but it's still hard to decide what the most important points are. They'll want to know how to help a child learn, or what makes them tick. It only takes one word to tell them what CAUSES FASDs.
Friday, Dan and I will be attending the monthly Coordinated Services Team meeting, as parent representatives. Even though we don't have many parents attending this meeting, I've gotten the feeling that the professionals there really do listen to what parents have to say. We appreciate that.
Sometime this week, I'll find time to be the ordinary parent to Thomas. And somewhere in there, I'll make time to do the extra ordinary things for the extra ordinary little boy.
Today will be spent doing the mundane household "stuff." You know, laundry, dishes, stuff like that. I'll also be prepping for Thursday.
Tuesday, I'll be co-presenting a 4 hour training on Advocacy. I'm looking forward to this because I'll be able to give some concrete examples, based on personal experience. It won't be just the list in the power point. It's become REAL to me in the last year. I love that I'll be able to drive down Highway 63. It's one of the pretty drives closeby.
Wednesday I'll be at the board meeting for the New Day Shelter. I rececently became a board member for that. I'm looking forward to this, since it's an important issue, but doesn't hit quite as close to home as the FASD issues. It truly lets me take some focus off of US and onto helping others in a good way. I figure I can get the word out about the services the shelter provides, and hopefully find some people willing to support it $$$-wise.
Thursday, I'll be conducting an inservice for the local school district. The up side is I'll have a captive audience that will include all school staff, and not just the teachers. The down side is I only have 30 minutes to get some good information to the staff. I'll be going back later in the school year for more in depth information, but it's still hard to decide what the most important points are. They'll want to know how to help a child learn, or what makes them tick. It only takes one word to tell them what CAUSES FASDs.
Friday, Dan and I will be attending the monthly Coordinated Services Team meeting, as parent representatives. Even though we don't have many parents attending this meeting, I've gotten the feeling that the professionals there really do listen to what parents have to say. We appreciate that.
Sometime this week, I'll find time to be the ordinary parent to Thomas. And somewhere in there, I'll make time to do the extra ordinary things for the extra ordinary little boy.
Thursday, August 20, 2009
At the other end of the spectrum...a great day
Yesterday was overall a great day with Thomas. We had to travel to Duluth (about 2 hours) for a 9:00am doctor appointment for Dan/Grandpa. We left at 6:30. We had prepped Thomas the night before telling him that it was really important for us to leave on time, so he needed to get ready then, instead of in the morning. That little guy was ready before both of us. Because he kept asking "when are you going to be ready to go?" we were able to get out the door on time. YAY Thomas.
While Dan waited for his appointment, Thomas took me for a walk. He discovered spiderwebs on the outside of several windows and made sure to tell everyone..doctors, nurses, visitors, patients...about those webs. He also discovered 2 birds nesting in the corner of the building, despite the spikes they put on the ledges to prevent birds from gathering. He kept himself busy by checking out all the magazines in the reception area, and talking about the ship he saw on the Lake (beautiful view from the waiting area).
After all this, we had planned on going to the Old Country Buffet, which has been a good place for him in the past. We changed out plans before getting there, and he did fine with that. We spent about 45 minutes in Petco, despite getting what we needed within 5 minutes. He was fascinated by the tarantula, guinea pigs, and ferrets. It was worth our time to see him so animated with these critters.
We then HAD to stop at Michael's, again for him. We knew he'd be occupied with the little animals they have there too. We told him he could pick one out. He's quite the shopper. Our last stop was Office Max to pick up a few things. He was getting a little bored there and just said "I want to go back to the car." So, I took him there while Dan paid for the items.
This is when things got interesting. We were waiting in the car and it began to sprinkle. Just a light sprinkle. Dan put the things in the car, and it was time for the windshiled wipers. We drove to the Buffet and it was pouring. We sat in the care for a few minutes, then decided if we were going to eat there, we needed to get wet. Thomas had other plans. His plans didn't include getting wet. AT. ALL. We finally convinced him it would be okay, that we were ALL going to get wet, and that if wanted the spaghetti there, he had to get wet. He took off his glasses (the ones we just had to new nose pads put on) As soon as we got in the door, he went to put the glasses on, and they broke. Just broke. It was an accident. Fortunately, there was a Lens Crafter in the mall, so we figured we'd eat, then go there.
Thomas got a bit antsy before I finished eating, so Dan took him to the Lens Crafter, and I'd move the car to the other side of the mall. Easier said than done in the rain storm. Anyone who was caught inside the mall during the storm was not leaving, which meant no parking spots fairly closeby. I had already gotten soaked, and was actually chilled, so I sat and waited...and waited...and waited.
I had called Dan and told him what was going on in the real world outside. I wasn't sure how he'd be doing with Thomas, by himself. I worried needlessly. Thomas stuck by Dan the whole time. After getting the new glasses ordered (because they broke there only duct tape could fix them), they killed time at Barnes and Noble. I was still in the car, hearing the thunder and heavy rain. When they had the glasses, I picked them up at the door, and found two guys, BOTH in good moods, neither of them upset with the other...laughing as they got in the car. I have to give the YAY to both Dan AND Thomas for that.
Of course, the first thing Thomas told me...LOUDLY...was "The pee AND poop went TWO TIMES!"
The rain continued the entire drive home too. Thomas took a short snooze. He was just great.
While Dan waited for his appointment, Thomas took me for a walk. He discovered spiderwebs on the outside of several windows and made sure to tell everyone..doctors, nurses, visitors, patients...about those webs. He also discovered 2 birds nesting in the corner of the building, despite the spikes they put on the ledges to prevent birds from gathering. He kept himself busy by checking out all the magazines in the reception area, and talking about the ship he saw on the Lake (beautiful view from the waiting area).
After all this, we had planned on going to the Old Country Buffet, which has been a good place for him in the past. We changed out plans before getting there, and he did fine with that. We spent about 45 minutes in Petco, despite getting what we needed within 5 minutes. He was fascinated by the tarantula, guinea pigs, and ferrets. It was worth our time to see him so animated with these critters.
We then HAD to stop at Michael's, again for him. We knew he'd be occupied with the little animals they have there too. We told him he could pick one out. He's quite the shopper. Our last stop was Office Max to pick up a few things. He was getting a little bored there and just said "I want to go back to the car." So, I took him there while Dan paid for the items.
This is when things got interesting. We were waiting in the car and it began to sprinkle. Just a light sprinkle. Dan put the things in the car, and it was time for the windshiled wipers. We drove to the Buffet and it was pouring. We sat in the care for a few minutes, then decided if we were going to eat there, we needed to get wet. Thomas had other plans. His plans didn't include getting wet. AT. ALL. We finally convinced him it would be okay, that we were ALL going to get wet, and that if wanted the spaghetti there, he had to get wet. He took off his glasses (the ones we just had to new nose pads put on) As soon as we got in the door, he went to put the glasses on, and they broke. Just broke. It was an accident. Fortunately, there was a Lens Crafter in the mall, so we figured we'd eat, then go there.
Thomas got a bit antsy before I finished eating, so Dan took him to the Lens Crafter, and I'd move the car to the other side of the mall. Easier said than done in the rain storm. Anyone who was caught inside the mall during the storm was not leaving, which meant no parking spots fairly closeby. I had already gotten soaked, and was actually chilled, so I sat and waited...and waited...and waited.
I had called Dan and told him what was going on in the real world outside. I wasn't sure how he'd be doing with Thomas, by himself. I worried needlessly. Thomas stuck by Dan the whole time. After getting the new glasses ordered (because they broke there only duct tape could fix them), they killed time at Barnes and Noble. I was still in the car, hearing the thunder and heavy rain. When they had the glasses, I picked them up at the door, and found two guys, BOTH in good moods, neither of them upset with the other...laughing as they got in the car. I have to give the YAY to both Dan AND Thomas for that.
Of course, the first thing Thomas told me...LOUDLY...was "The pee AND poop went TWO TIMES!"
The rain continued the entire drive home too. Thomas took a short snooze. He was just great.
Monday, August 17, 2009
One of the horrible no good days for Thomas
Most of the day has been met with:
...and in no particular order. Some things were repeated over and over.
I hate you, Niijii (dog).
Shut your mouth mommy.
Thomas spitting on the personal care worker not just once, but several times.
Overall defiance.
I hate my glasses (and pulling them apart just a few minutes after we walked out of the eyeglass place to get the nosepads replaced)
We're already on a no-TV day due to the spitting at the PCW (no apologies = no TV until done), so I know some of this stuff is related to that. But alot of it was said well before the spitting incidents.
Almost destroying the glasses doesn't bother me nearly as much as the spitting at a person, or being mean to the dog. I can handle the "shut your mouth mommy" simply by doing that and ignoring his requests for a bit.
What made an impression on me as a child would be considered abuse today. Even if it weren't, it wouldn't have the right long-term effect for him anyway.
Sigh/
...and in no particular order. Some things were repeated over and over.
I hate you, Niijii (dog).
Shut your mouth mommy.
Thomas spitting on the personal care worker not just once, but several times.
Overall defiance.
I hate my glasses (and pulling them apart just a few minutes after we walked out of the eyeglass place to get the nosepads replaced)
We're already on a no-TV day due to the spitting at the PCW (no apologies = no TV until done), so I know some of this stuff is related to that. But alot of it was said well before the spitting incidents.
Almost destroying the glasses doesn't bother me nearly as much as the spitting at a person, or being mean to the dog. I can handle the "shut your mouth mommy" simply by doing that and ignoring his requests for a bit.
What made an impression on me as a child would be considered abuse today. Even if it weren't, it wouldn't have the right long-term effect for him anyway.
Sigh/
Raising a finger right along with her
My blog friend Kari has an awesome way of writing what so many people feel. Read her August 16th entry (and then read more...it's great reading, believe me).
Maybe raising a finger on 09/09/09 should be included in the list of things to do on International FASD Awareness Day.
What do you think?
Maybe raising a finger on 09/09/09 should be included in the list of things to do on International FASD Awareness Day.
What do you think?
Saturday, August 15, 2009
A view from behind
This afternoon we went to church. We don't do this very often, but decided it would be a good day to do it.
Thomas did relatively well. We got there just before mass started. We sat up front (to avoide the distractions...it works better for him up there). We let him take one toy with him. Silly us. Little did we know until we got there that he managed to stuff 6 or 7 tiny toys inside the BUTT of the one toy. This kid is smart.
He got a bit antsy about half way through. Not bad for him..at all. Even so, I decided to position myself in the back of the church "just in case" it escalated.
He did announce to the entire congregation that he wanted something to drink. Why was I surprised when he punched Dan as he received wine at communion. DAN got something to drink, but Thomas didn't. Other people might not have seen it as a reaction to not getting something to drink. Not that punching is acceptable by any means, but I don't think many of them really understand just how great Thomas had done. They saw the punch. Not the whole child. Sad to say, that's what I saw for a moment too.
Thomas did relatively well. We got there just before mass started. We sat up front (to avoide the distractions...it works better for him up there). We let him take one toy with him. Silly us. Little did we know until we got there that he managed to stuff 6 or 7 tiny toys inside the BUTT of the one toy. This kid is smart.
He got a bit antsy about half way through. Not bad for him..at all. Even so, I decided to position myself in the back of the church "just in case" it escalated.
He did announce to the entire congregation that he wanted something to drink. Why was I surprised when he punched Dan as he received wine at communion. DAN got something to drink, but Thomas didn't. Other people might not have seen it as a reaction to not getting something to drink. Not that punching is acceptable by any means, but I don't think many of them really understand just how great Thomas had done. They saw the punch. Not the whole child. Sad to say, that's what I saw for a moment too.
Friday, August 14, 2009
Counting Down the Days
It's that time of year again, when we count down the days til school starts. We've been fortunate for the last few years to have only a one month break between school years for Thomas. I will miss that as he moves on to Kindergarten in EIGHTEEN days.
We've had some unusual heat going on in our area. Some would call it wimpy of us to even call it heat. We've gone to the beach more than usual for us, but even that is hot.
Thomas had his semi-annual eye exam yesterday. That was interesting. I've told the doctor that someone really needs to update the pictures they ask the kids to identify. When Thomas saw a picture of an old rotary dial phone, he just looked at me and said "How am I supposed to know what THAT is?" I was very relieved the doctor didn't have to put the drops in Thomas' eyes this time. No prescription changes noted. This appointment was short, sweet, and to the point. We were in/out of there in less than 10 minutes.
We're going to be starting the process to get a Disability Determination for Thomas, so that he might qualify for the Children's Long Term Support medicaid waivers here. To do that, we'll need to have a pretty extensive evaluation done. It'll be two days long, which makes more sense than one hour ones, doesn't it? Of course, we'll have to travel at least four hours to get there. I just love Wisconsin sometimes.
One of things I don't look forward to in that whole process is having to focus on what Thomas is UNable to do, and how it effects his day to day life. We're also being realistic in not getting our hopes up because his disability is somewhat invisible. The other reality is that it would not get him any services at this point because he'd be on a waiting list anyway. It's that "hurry up and wait" mentality of care.
Thomas is loving his Body Sock these days. The auditory integration therapy is going 'okay.' It's much harder to do that with all the distractions at home, than in a clinical setting. I'm guessing that's why we're doing this for 4 weeks instead of two.
Potty training update: Thomas is doing GREAT! It's pretty much down to just a nighttime pullup. He usually makes it to the bathroom in time during the day. I've been impressed with him when we go places. The very first thing he asks is where the bathroom is. He doesn't always need to go, but he just wants to be sure there is one. Now, if I could just convince to use his very quiet voice when he decides to announce to the entire store that "Mommy...THE PEE WENT!"
We've had some unusual heat going on in our area. Some would call it wimpy of us to even call it heat. We've gone to the beach more than usual for us, but even that is hot.
Thomas had his semi-annual eye exam yesterday. That was interesting. I've told the doctor that someone really needs to update the pictures they ask the kids to identify. When Thomas saw a picture of an old rotary dial phone, he just looked at me and said "How am I supposed to know what THAT is?" I was very relieved the doctor didn't have to put the drops in Thomas' eyes this time. No prescription changes noted. This appointment was short, sweet, and to the point. We were in/out of there in less than 10 minutes.
We're going to be starting the process to get a Disability Determination for Thomas, so that he might qualify for the Children's Long Term Support medicaid waivers here. To do that, we'll need to have a pretty extensive evaluation done. It'll be two days long, which makes more sense than one hour ones, doesn't it? Of course, we'll have to travel at least four hours to get there. I just love Wisconsin sometimes.
One of things I don't look forward to in that whole process is having to focus on what Thomas is UNable to do, and how it effects his day to day life. We're also being realistic in not getting our hopes up because his disability is somewhat invisible. The other reality is that it would not get him any services at this point because he'd be on a waiting list anyway. It's that "hurry up and wait" mentality of care.
Thomas is loving his Body Sock these days. The auditory integration therapy is going 'okay.' It's much harder to do that with all the distractions at home, than in a clinical setting. I'm guessing that's why we're doing this for 4 weeks instead of two.
Potty training update: Thomas is doing GREAT! It's pretty much down to just a nighttime pullup. He usually makes it to the bathroom in time during the day. I've been impressed with him when we go places. The very first thing he asks is where the bathroom is. He doesn't always need to go, but he just wants to be sure there is one. Now, if I could just convince to use his very quiet voice when he decides to announce to the entire store that "Mommy...THE PEE WENT!"
Monday, August 10, 2009
Our first FASD presentation
I knew I had this on our webpage, but decided it was worth linking to.
About a year after Thomas was diagnosed with an FASD, we did our first presentation with some Head Start staff, to parents. When looking at it today, I realized it's time to update some of the pictures and informatin. Take a look and tell me what you think.
Go to: Our Website. In the left column, click on FASD and you'll get the PDF file.
You're welcome to browse the other pages too. You'll get an idea of a few of the very special people in our lives.
It's been quite awhile since our site has been updated, but that will be changing just as soon and Dan gets his woodworking craft business open up.
About a year after Thomas was diagnosed with an FASD, we did our first presentation with some Head Start staff, to parents. When looking at it today, I realized it's time to update some of the pictures and informatin. Take a look and tell me what you think.
Go to: Our Website. In the left column, click on FASD and you'll get the PDF file.
You're welcome to browse the other pages too. You'll get an idea of a few of the very special people in our lives.
It's been quite awhile since our site has been updated, but that will be changing just as soon and Dan gets his woodworking craft business open up.
Saturday, August 8, 2009
Slow Down, You're going too Fast
I was at a workshop a few weeks ago and someone said something that really struck a chord. They said that one thing they've learned from their child with special needs is to slow down. Just slow down. We had some discussion about that since I see Thomas as a pokey little guy. Rather than try to speed HIM up, I need to slow ME down. Give Thomas time to do what he needs to do before taking on the task of getting out the door, for whatever we need to do. I've been making a conscious effort to actually start about a half hour before I need to be out the door, and generally, that goes much smoother than the "hurry up, we have to leave NOW" kind of thing.
Except this morning.
I lost track of time, which meant we only had 10 minutes to get out of the house. It takes Thomas 20 minutes to "get ready," as in gather all the tiny little toys he want to take, and not get them mixed in with the wrong toys. Not to mention finding just the right containing to put them in.
We got to our destination 15 minutes late. The world didn't stop because we were late. We didn't miss too much because we were late.
People around here joke about "Indian Time." We go by "Thomas Time." As some people say....whenever.
Except this morning.
I lost track of time, which meant we only had 10 minutes to get out of the house. It takes Thomas 20 minutes to "get ready," as in gather all the tiny little toys he want to take, and not get them mixed in with the wrong toys. Not to mention finding just the right containing to put them in.
We got to our destination 15 minutes late. The world didn't stop because we were late. We didn't miss too much because we were late.
People around here joke about "Indian Time." We go by "Thomas Time." As some people say....whenever.
Saturday, August 1, 2009
Summer is one month (and some years it's 1 day, in WI)
School's out for summer. All I can hear in my head (literally, since I have my processors off) is Alice Cooper.
The Head Start graduation was um.... depends on whose point of view.
From me: It was very nice. A few more people than I expected, but it was short.
From Dan: He really disliked it. Way too many people, too crowded, what was all the excitement about? Let's wait in the car. I'm not standing in line for the food.
From Thomas: It was way overstimulating. He, and a few others, were not able to stay focused during the waiting, and decided to spend their time wisely: in the playground. Talk about someone who knows how to handle the stress of things! We decided to le thim continue with that until just before his name would be called. We explained to him he could play until a certain point, and he was okay with that. When it came time, we literally had to drag him a few feet to get his cute little diploma, and a picture taken. We WERE able to stand long enough for someone to get this:
He was trying to really hold things together, but I think we might have pushed him a little bit too far because of our OWN wants of celebrating an event as a "typical family" would. We all paid for it dearly in the afternoon with a mega meltdown. As usual, after the meltdown, Thomas acted as though none of it even happened. In my attempt to explain the "I'm sorry" concept, another meltdown erupted. I put the brakes on all of it right then. It wasn't worth explaining about some social graces at that time.
The Head Start graduation was um.... depends on whose point of view.
From me: It was very nice. A few more people than I expected, but it was short.
From Dan: He really disliked it. Way too many people, too crowded, what was all the excitement about? Let's wait in the car. I'm not standing in line for the food.
From Thomas: It was way overstimulating. He, and a few others, were not able to stay focused during the waiting, and decided to spend their time wisely: in the playground. Talk about someone who knows how to handle the stress of things! We decided to le thim continue with that until just before his name would be called. We explained to him he could play until a certain point, and he was okay with that. When it came time, we literally had to drag him a few feet to get his cute little diploma, and a picture taken. We WERE able to stand long enough for someone to get this:
He was trying to really hold things together, but I think we might have pushed him a little bit too far because of our OWN wants of celebrating an event as a "typical family" would. We all paid for it dearly in the afternoon with a mega meltdown. As usual, after the meltdown, Thomas acted as though none of it even happened. In my attempt to explain the "I'm sorry" concept, another meltdown erupted. I put the brakes on all of it right then. It wasn't worth explaining about some social graces at that time.
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