One thing Scott noticed this weekend camping with Drew was that Drew gravitates to kids who are "like" him. The outsiders, the ones who don't quite fit in. Scott also noticed the disdain for this group of "misfits" from all the other boys that age. He said it was apparent that the other boys hadn't been taught to tolerate all kids and that Drew's friends were scared to be involved with the group probably because of previous taunting. It really makes me sick that kids learn at such a young age not to embrace differences. Drew has said "Why are we taught to tolerate change? We should embrace it because we are all different."
I know there have always been bullies. I was bullied horribly bu a group of girls when I was in high school. In my case and many cases back then the parents got involved and it got stopped in its tracks. Now, parents are just as much to blame as kids. They make snide comments about someone in a grocery line or on TV and their kids hear it. So the kids learn it is OK to say mean things. I know I have been guilty of saying something about an actress at an award show. And Drew had called me on it saying ""mom, you don't know her or her situation. Maybe her kid ripped the dress, or got sick on it and she was stuck with that one" POINT received loud and clear little buddy. My comments were bullying comments. They were critical and hurtful.
Kids are not mean to start out with are they? I know my beautiful niece who is not quite one shows so much compassion for the kids in her nursery class. My sister tells the story of when there was a fire drill and the babies were put in to cribs - two each- and rolled outside. My nieces crib mate looked scared and my niece reached over and stroked her face as if to say "it is gonna be ok. They (the teachers) are going to take care of us. Where do children lose that? Do we do such bad jobs as role models in our everyday life for our children - even unintentionally - that they think it is OK. If we are alerted that our child is picking on a kid do we put a stop to it or do we react like the scene from Breakfast Club where the jock is talking about making his father proud by bullying a nerd by taping his butt cheeks together and encourage it?
You often hear stories about baseball and basketball teams letting the team manager play in the last game. Or of the popular girl going to prom with a special needs kid. Those stories make me smile. I was at Disney last year for some training during and there was a group of kids dressed for prom. Everyone was stopping and looking at the couple in the center of the group. A handsome young man with Down's and a very pretty young lady. The boy looked so proud and had such a smile. I was so proud of that young lady (even though I don't know the whole story) for making his dream come true. It will be a memory for both of them.
So gentle reader, remind your children not to tolerate differences but embrace them because the person they are being nice to is just like them.
Sunday, April 06, 2014
Saturday, April 05, 2014
camping
Mom has had a quiet 20 hours. Scott and Drew have been off on Drew's first Scout camping trip.
Scott agreed to be an Assistant Scout Master. they are due home any time. I have been pretty nervous because of the bullies is in the other patrol but the adults are aware of the situation and should be on top of things. I still can't get used to the haircut. Drew looks so different. And in his scout uniform a totally different person.
Thursday, April 03, 2014
Hair today.....
A couple days ago Drew decided he wanted a change besides homeschooling. He told us he wanted a haircut. My heart sank. He has had beautiful long hair for about 4 years. I asked him how short. SHORT!
I had learned with our older son that hair was not something worth fighting over. There are more important things. So I sucked it up and took him to see my stylist yesterday.
Here is a before picture on a cruise we took in November.
I know women who would kill for hair like that!
Now here is what happened yesterday.
Drew loves it. I have noticed a slight decrease in the head tics. It is taking mom some time to get used to.
If he ever wants to he can grow it out again.
I had learned with our older son that hair was not something worth fighting over. There are more important things. So I sucked it up and took him to see my stylist yesterday.
Here is a before picture on a cruise we took in November.
I know women who would kill for hair like that!
Now here is what happened yesterday.
Drew loves it. I have noticed a slight decrease in the head tics. It is taking mom some time to get used to.
If he ever wants to he can grow it out again.
Wednesday, April 02, 2014
The Dark Side ot Tourettes
I hesitate to post this but I think it is something to share. The things that are seen and quoted in this video are from children who have Tourette's Drew is quoted at the 9 minute mark. This is painful to watch on many levels. Tourette's HURTS both emotionally and physically. Drew has one tic that requires botox treatments every 3 months to lessen it otherwise he could risk an aortic dissection.
The Dark Side of Tourette's
I will admit I cried while watching this video. As a mom whose child lives with this daily I cry for each person who suffers from this.
The Dark Side of Tourette's
I will admit I cried while watching this video. As a mom whose child lives with this daily I cry for each person who suffers from this.
trying to reach Ellen
We are trying to reach ELLEN. Drew wants to get the word out during National TS Awareness month about Tourette's and how it effects kids and adults. He wants her to tell the world that there is no cure. It can get better. He wants her to know there is no REAL treatment. There are a few things that can be done to lessen the symptoms. He wants her to know there is no real research being done for a cure. He wants Ellen to know that Tourette's is not what TV portrays it as. It is not someone cussing continually. That is Coproillia. And less than 10 % of the 200,000 people who have TS suffer from this. He wants her to know it is so much more. It is OCD, Anxiety issues, sensory issues, being tired all the time because a person with TS doesn't stop moving. And you feel you have to hide your tics so you won't bother others. It is being bullied by kids and adults because you think differently and can't always stop what comes from your mouth. It is not being able to stop yourself from doing something you know might hurt because it has to be done. It is sitting my yourself at lunch because kids don't want to sit next to you. It is playing alone on the swings and kids coming over and calling you names. it is your parents deciding that you would be better at home for school because it is just to hard to face the bullies everyday. it is teachers turning the other way and allowing it to happen. It is your mom and dad (and 250 facebook friends of theirs who post encouragement) who know you can finish math homework even when teachers don't.
It is isolating because when adults won't get educated they can't educate kids who call you weird, strange, stupid (because you can't remember things) It is watching people like Henry Winkler, Brad Cohen and Dan Akroyd and others who have had disabilities who have overcome because they give you some hope that someday you will be "normal". It is listening to Wil Wheaton tell a girl it is OK to be a nerd and like comics because it is what you have to hold on to because your hero is batman. It is being told batman doesn't exist because kids say super hero's aren't real (I know they aren't but they keep me going) It is playing alone with legos because no one will play with you. It is hoping that there will be someone who wants to come to your birthday party, and your parents having to have a back up plan in case no one wants to come. It is
PER the CDC:
No one knows what TS is and Ellen you could shine a national spotlight on this. No one talks about this and we need your help to get the word out! It is someone like you who says be kind to each other every day who can show the world that we are just like everyone one else.
Sincerely,
Drew Anderson and his mom!
PER the CDC:
In the United States
- It is not known exactly how many people have Tourette Syndrome (TS). A Centers for Disease Control and Prevention (CDC) study has found that 3 of every 1,000 children 6 through 17 years of age and living in the United States have been diagnosed with TS based on parent report; this represents about 148,000 children. Other studies using different methods have estimated the rate of TS at 6 per 1,000 children.
- Among children with TS, 27% have been reported as having moderate or severe forms of the condition.
- TS affects people of all racial and ethnic groups.
- Males are affected three times more often than females.
- A TS diagnosis is twice as likely among non-Hispanic White people than among Hispanic and non-Hispanic Black people.
- A diagnosis of TS is twice as common among children 12 through 17 years of age as among those 6 through 11 years of age.
Co-Occurring Conditions
- Among children diagnosed with TS, 79% also have been diagnosed with at least one additional mental health, behavioral, or developmental condition, such as:
- Attention-deficit/hyperactivity disorder (ADHD), 64%;
- Behavioral or conduct problems, 43%;
- Anxiety problems, 40%;
- Depression, 36%; and
- Developmental delay affecting his or her ability to learn, 28%.
- More than one-third of people with TS also have obsessive-compulsive disorder.2,3
No one knows what TS is and Ellen you could shine a national spotlight on this. No one talks about this and we need your help to get the word out! It is someone like you who says be kind to each other every day who can show the world that we are just like everyone one else.
Sincerely,
Drew Anderson and his mom!
Tuesday, April 01, 2014
WE ARE BACK!
AND WE ARE BACK!!!!!! It has been a bumpy year!
When we left we were in the process of transitioning Drew out of a wrong placement in our school district in Colorado to a mainstream placement at his home school. We had high hopes. We had a great working relationship with the principal, Drew had toured the school and met some kids. Things were looking up.
FAST FORWARD to this year. Let's just say it was an ugly year. There was a new principal (the former one was promoted because he was awesome) who refused to understand Tourette's and the comorbids. She would not follow thru on anything the former principal has promised us even though she was in on the transition meeting) She saw Drew's Tourette's as behaviors not part of a neurological condition. By spring break he had been suspended 9 days total for tics that she saw as behavioral. We had offered to bring in a TS specialist to talk to them. Nope they knew everything. After all, they are the biggest school district in Colorado. Don't get me wrong there were some good teacher's who cared a great deal about Drew but we think their hands were tied as to how they could help him due to administration at the school and district level. That is what we think but we have no proof.
We have moved back to home schooling as of this week. It is a bit rocky but I think in the long run it will be the best thing for our family. Procrastination is Drew's middle name. Common Core is not his friend (or mine)
I am hoping to find curriculum that will be more TS friendly that I can talk about as we go along. I have found a great spelling curriculum that I will talk about in the next week.
Drew appears to be happier to be back at home. He is free to tic and we are seeing more of them during the day. He is sleeping better. His frustration ebbs and wanes depending on what we are working on. His appetite has improved. So those are all good things.
So dear readers. Here we go. Homeschooling a kid with Tourette's. This will be fun! I promise.
When we left we were in the process of transitioning Drew out of a wrong placement in our school district in Colorado to a mainstream placement at his home school. We had high hopes. We had a great working relationship with the principal, Drew had toured the school and met some kids. Things were looking up.
FAST FORWARD to this year. Let's just say it was an ugly year. There was a new principal (the former one was promoted because he was awesome) who refused to understand Tourette's and the comorbids. She would not follow thru on anything the former principal has promised us even though she was in on the transition meeting) She saw Drew's Tourette's as behaviors not part of a neurological condition. By spring break he had been suspended 9 days total for tics that she saw as behavioral. We had offered to bring in a TS specialist to talk to them. Nope they knew everything. After all, they are the biggest school district in Colorado. Don't get me wrong there were some good teacher's who cared a great deal about Drew but we think their hands were tied as to how they could help him due to administration at the school and district level. That is what we think but we have no proof.
We have moved back to home schooling as of this week. It is a bit rocky but I think in the long run it will be the best thing for our family. Procrastination is Drew's middle name. Common Core is not his friend (or mine)
I am hoping to find curriculum that will be more TS friendly that I can talk about as we go along. I have found a great spelling curriculum that I will talk about in the next week.
Drew appears to be happier to be back at home. He is free to tic and we are seeing more of them during the day. He is sleeping better. His frustration ebbs and wanes depending on what we are working on. His appetite has improved. So those are all good things.
So dear readers. Here we go. Homeschooling a kid with Tourette's. This will be fun! I promise.
Wednesday, April 24, 2013
New Territory
We are entering new territory. Drew is going to his first sleepover on Friday night. All the boys in his class were invited to one of the boys house for "EPIC NIGHT" He is to bring his sleeping bag, swim suit and nerf gun. A new Nerf gun has been purchased with extra ammo. He has been excited about this for several weeks.
I, on the other hand, have been pretty nervous. First concern - there is one boy that Drew doesn't always get along with and he gets on Drew's nerves. I worry that as the evening wears on and as Drew gets tired, that the boy will push Drew's buttons and he won't be able to control himself and will get angry. I also worry that as he gets tired the tics will get worse and it will cause issues. The kids have never really said anything but things are tame and as excitement and tired creep in the increase.
Don't get me wrong I am thrilled he is being included and is having the experiences that all boys his age should have. I did have a long talk with him tonight about several things. I told him no matter what this boy did, Drew had to hold his temper and walk away. I also talked to him about the after effects of a sleep over. Being tired and grouchy and increased tics are two big ones. I wanted him to know what too expect. He did have some hesitation after we talked but I told him that we WANTED him to go and have a most awesome time but to know there could be some extra tics on Saturday.
He has been practicing with the new Nerf gun. I will talk to the mom tomorrow and give her a heads up. It feels a little strange because I usually let Drew control who he tells and how. Also trying to figure out how to handle evening meds. They make him sleepy and he will crash about 20 minutes after taking them. Not ideal for an EPIC NIGHT!.If he doesn't get them at all he won't sleep. ARG!!!!
I am sure i am over thinking all of this but that is what comes with entering into new Territory.
Monday, April 22, 2013
90 seconds with TS
The first time I truly understood what TS and the co morbid symptoms was like for a child was while watching a video given to educators on teaching to children with TS. It can be ordered here
The presenter has a son with TS and did an exercise for the educators to find out what it was like to live with TS. I cried as I watched. I had no TRUE idea what my son was dealing with. Yes I heard the words and it was explained to me. Not until I attempted to do the following exercise did I start to have a light bulb go off in my head and said OMG what have I closed my eyes to. How can I be the best advocate for my son if I didn't understand what he was going through. This segment helps someone who needs an understanding for those who don't know TS, Try the exercise as she does it. When you are done think of Drew.
Or as real as anyone who can have it for 90 seconds of the exercise. You can go back to normal but a TS kids will keep on ticcing.
Something else people don't understand is the toll it takes on the body... Drew is in motion all the time There is not a time when his body is not moving. This includes when he sleeps. Hard to sleep with constant movement. I know teachers don't like it when I keep him home for a day or half a day to let him sleep. His body needs time to recover when the episodes gets bad. Some days are better than others. some days are a nightmare. He has injured himself with this tic but he strives to be normal. He rockclimbs,tumbles, plays basketball, does regular kids stuff.
Watch the video, do the exercise and leave me a note as to how it went for you. I would be interested to know..
Cathy
The presenter has a son with TS and did an exercise for the educators to find out what it was like to live with TS. I cried as I watched. I had no TRUE idea what my son was dealing with. Yes I heard the words and it was explained to me. Not until I attempted to do the following exercise did I start to have a light bulb go off in my head and said OMG what have I closed my eyes to. How can I be the best advocate for my son if I didn't understand what he was going through. This segment helps someone who needs an understanding for those who don't know TS, Try the exercise as she does it. When you are done think of Drew.
Or as real as anyone who can have it for 90 seconds of the exercise. You can go back to normal but a TS kids will keep on ticcing.
Something else people don't understand is the toll it takes on the body... Drew is in motion all the time There is not a time when his body is not moving. This includes when he sleeps. Hard to sleep with constant movement. I know teachers don't like it when I keep him home for a day or half a day to let him sleep. His body needs time to recover when the episodes gets bad. Some days are better than others. some days are a nightmare. He has injured himself with this tic but he strives to be normal. He rockclimbs,tumbles, plays basketball, does regular kids stuff.
Watch the video, do the exercise and leave me a note as to how it went for you. I would be interested to know..
Cathy
Tuesday, April 16, 2013
Transition
A month ago I posted this update. I hadn't heard anything and was worried that this was going to be yet another debacle with this school district. I started leaving messages with the superintendent and the advocate. The superintendent called tonight and after apologizing profusely for letting the ball drop, he started talking about the next 3 weeks.
The principal at the school Drew will be going to was just promoted. That threw a monkey wrench in things. We all want the principal who will be at the school to be involved in this transition. The current principal will be over 10 schools, including the one Drew will be attending. The VP may be promoted to principal so she would be another possibility to oversee the the transition. The third option presented to wait till the principal is named in the next couple weeks. NOT AN OPTION. There are only 5 weeks of school left and I will be gone one of those weeks. (rough life having to go to WDW for training)
I did feel good that he wanted the new school totally educated about TS. He has done his research and now understands that there are probably many in the district who have this that they are not aware of. If 1 in 1000 suffer from some form of TS than Drew is not alone. He did admit they don't have an educational program in place for teachers let alone kids to understand TS. Everyone knows ADHD, Autism and so many other challenges. But very few understand TS.
The superintendent was going to send out emails tonight to all team members and by Thursday have a plan in place to meet with the current principal of the new school, VP and new principal( if one has been named) Then the psychologist and IEP case manager from the new school will go observe Drew and meet with the team at his current school. Then, Drew will visit the new school a couple times to meet teachers and kids. After all of that we will have a HUGE meeting with the team from both schools to finalize the IEP (again). there will also be education for the staff at the new school of all of the parts of TS. All of this before May 11. I am tired just typing it, let alone living it. At some point there will also be education for the students. I am assuming that will be next school year.
The rough part will be telling Drew. He has had so much change in the last year and has just begun to settle in. The superintendent has assured me they have done this many times and most kids settle in well. I have been rehearsing all of the positives for Drew so when we tell him, we can excite him about the change.
In other new - Drew got his CPAP today. Anxious to see how he feels in a couple days after getting good sleep.
Mother nature is still menopausal. We got 9 inches of snow yesterday and 4 more coming tomorrow night. At least it got above freezing today to get rid of most of what was received yesterday.
Drew got a freestanding basketball hoop this past weekend. A neighbor decided to get rid of theirs since their daughters no longer used it. Great purchase for 30.00.
The principal at the school Drew will be going to was just promoted. That threw a monkey wrench in things. We all want the principal who will be at the school to be involved in this transition. The current principal will be over 10 schools, including the one Drew will be attending. The VP may be promoted to principal so she would be another possibility to oversee the the transition. The third option presented to wait till the principal is named in the next couple weeks. NOT AN OPTION. There are only 5 weeks of school left and I will be gone one of those weeks. (rough life having to go to WDW for training)
I did feel good that he wanted the new school totally educated about TS. He has done his research and now understands that there are probably many in the district who have this that they are not aware of. If 1 in 1000 suffer from some form of TS than Drew is not alone. He did admit they don't have an educational program in place for teachers let alone kids to understand TS. Everyone knows ADHD, Autism and so many other challenges. But very few understand TS.
The superintendent was going to send out emails tonight to all team members and by Thursday have a plan in place to meet with the current principal of the new school, VP and new principal( if one has been named) Then the psychologist and IEP case manager from the new school will go observe Drew and meet with the team at his current school. Then, Drew will visit the new school a couple times to meet teachers and kids. After all of that we will have a HUGE meeting with the team from both schools to finalize the IEP (again). there will also be education for the staff at the new school of all of the parts of TS. All of this before May 11. I am tired just typing it, let alone living it. At some point there will also be education for the students. I am assuming that will be next school year.
The rough part will be telling Drew. He has had so much change in the last year and has just begun to settle in. The superintendent has assured me they have done this many times and most kids settle in well. I have been rehearsing all of the positives for Drew so when we tell him, we can excite him about the change.
In other new - Drew got his CPAP today. Anxious to see how he feels in a couple days after getting good sleep.
Mother nature is still menopausal. We got 9 inches of snow yesterday and 4 more coming tomorrow night. At least it got above freezing today to get rid of most of what was received yesterday.
Drew got a freestanding basketball hoop this past weekend. A neighbor decided to get rid of theirs since their daughters no longer used it. Great purchase for 30.00.
Sunday, April 14, 2013
another piece of the puzzle
Sleep has always been an issue for Drew. I should say waking up has been a problem for Drew. I have always said he loves his sleep. He is impossible to wake up. We suspected sleep issues for a long time. I have heard him stop breathing (apnea) when we have shared a hotel room. I had mentioned it to doctors in the past. But no one ever did anything to see what the issue was.
UNTIL we moved here and got hooked up with the children's hospital.
A week ago Drew and I traveled to Broomfield for a night. It was not a pleasure trip but me found some fun. Drew had a sleep study scheduled at the satellite Children's Hospital.
First we stopped for dinner. We went to Gunther Toody's for dinner. Drew was in heaven. they had monitors with old Popeye cartoons on. He didn't say much while he was drinking his root beer float
UNTIL we moved here and got hooked up with the children's hospital.
A week ago Drew and I traveled to Broomfield for a night. It was not a pleasure trip but me found some fun. Drew had a sleep study scheduled at the satellite Children's Hospital.
First we stopped for dinner. We went to Gunther Toody's for dinner. Drew was in heaven. they had monitors with old Popeye cartoons on. He didn't say much while he was drinking his root beer float
Then off to the hospital. After getting Drew hooked up to all the machines and ready for bed our night started. Drew barely stayed awake while they were getting things hooked up so he was out cold.
I wish I had been so lucky.I could not sleep. The "bed" for the parents is not a bed it is a slab with a pillow.
About midnight the respiratory therapist came in and told me that Drew had yet to go in to REM sleep. He had been asleep three and half hours. That was the first clue as to the explanation of the sleep problems with Drew. He also said that there had been some dips in his oxygen saturation.
The RT came in at 3 and said Drew FINALLY had gone in to REM sleep and he could finally put a CPAP mask on him. He immediately went into REM sleep. They woke him up at 6. The RT told me it took about 2 - 3 weeks for the results to be scored.
On the way home (after a Starbucks stop) I asked how he felt. He said he felt a little more awake than usual.
I was surprised when the sleep doc called Thursday. Yes Drew has sleep apnea. The numbers were astounding. I am not publishing them. We now know why Drew is IMPOSSIBLE to wake up in the morning.
Tuesday afternoon Drew will be fitted for his CPAP. We are hoping for improvement in Drew's sleep.
Stay tuned for an update once we see what happens
Saturday, March 30, 2013
talking about having Tourettes
First let me say HAPPY EASTER!!!
Second, sorry I have been MIA. I took Hubs to the ER last Sunday and he had to have emergency surgery Monday morning. He then developed a complication that set him back a couple days. I am happy to report he came home yesterday and is slowly recovering. Not exactly the spring break I was planning.
For Drew twitching has been something he has done for as long as he can remember. First it was a shoulder shrug, then a hop step and over time they have developed. One tic he as is that he holds is breath for a couple seconds. That one bugs me. I worry. His vocal tics come and go depending on stress. We are seeing improvement since the Botox treatment. That treats the simple tic of the head turn.
He has a couple complex tics. The most recent is he puts his hand in front of his eyes and turns his head..
He gets so frustrated. Tonight he was having snack and his body jerked and he spilled milk all over him and the table. He immediately started to apologize saying " I am sorry. It is my Tourette's" I sat down and told him he NEVER EVER EVER had to apologize to me or anyone else for something he could not control. I told him it is part of who he is just like his brown hair and brown eyes. He told me he wished he had a sign he could carry saying he had TS. He always feels like he needs to say he is sorry.
We started talking about how to explain it to people. To educate them and how he could use humor. It is a hard concept for a 10 year old to grasp. I told him the best explanation to give is the one he gave the first time he met his rock climbing instructor. "Hi my name is Drew, I have Tourette's, I twitch"
Works for me. I have a couple of my own. Some were swiped from other TS parents
Tic and the whole world tics with you...or at least stops and watches for a while.
A tic, a shout, that is what it's all about.
Sometimes I feel like a tic. Sometimes I don't.
And my favorite. I made it up and hope it will make the parent Tshirt
Ticcing....It ain't just for clocks anymore!
With something like TS...Humor is the best education. I hope I can help Drew to understand that.
Second, sorry I have been MIA. I took Hubs to the ER last Sunday and he had to have emergency surgery Monday morning. He then developed a complication that set him back a couple days. I am happy to report he came home yesterday and is slowly recovering. Not exactly the spring break I was planning.
For Drew twitching has been something he has done for as long as he can remember. First it was a shoulder shrug, then a hop step and over time they have developed. One tic he as is that he holds is breath for a couple seconds. That one bugs me. I worry. His vocal tics come and go depending on stress. We are seeing improvement since the Botox treatment. That treats the simple tic of the head turn.
He has a couple complex tics. The most recent is he puts his hand in front of his eyes and turns his head..
He gets so frustrated. Tonight he was having snack and his body jerked and he spilled milk all over him and the table. He immediately started to apologize saying " I am sorry. It is my Tourette's" I sat down and told him he NEVER EVER EVER had to apologize to me or anyone else for something he could not control. I told him it is part of who he is just like his brown hair and brown eyes. He told me he wished he had a sign he could carry saying he had TS. He always feels like he needs to say he is sorry.
We started talking about how to explain it to people. To educate them and how he could use humor. It is a hard concept for a 10 year old to grasp. I told him the best explanation to give is the one he gave the first time he met his rock climbing instructor. "Hi my name is Drew, I have Tourette's, I twitch"
Works for me. I have a couple of my own. Some were swiped from other TS parents
Tic and the whole world tics with you...or at least stops and watches for a while.
A tic, a shout, that is what it's all about.
Sometimes I feel like a tic. Sometimes I don't.
And my favorite. I made it up and hope it will make the parent Tshirt
Ticcing....It ain't just for clocks anymore!
With something like TS...Humor is the best education. I hope I can help Drew to understand that.
Monday, March 18, 2013
Outcome of meeting with district
I have been putting this post off. Not sure why because it is good news. Maybe just so much to type? Hesitant things would fall through? I don't know but here we go.
Since moving to Colorado it has been one fight after another with the school. The administration refused to get educated on Tourettte Syndrome. Since the admin would not educate, the staff could not get educated nor could the students. Every day it was a fight. Drew was in a self contained classroom in California - not because of a behavior issue but because it was a good structured environment He thrived. His teacher in California was the most amazing woman who saw the potential in Drew.
Since Drew's IEP from CA was for a self contained class room the district decided he needed to be placed with kids who had bipolar, ODD and other behavior issues. Not the best place for a kid who needed a quiet structured classroom. I couldn't even get him mainstreamed per his IEP.
In January I really started pushing for what he needed. In small bits and pieces they started allowing him mainstream time. The problem we were running into was that the kids in the Special Ed class were making fun of Drew and hitting him. Problem was no one was telling me. I would hear about it from Drew and then have to find out what was going on. I started pointing out that Drew had no issue with the Gen Ed kids and the SPED kids had marked him as a target.
The special ed teacher watched some videos from TSA and went to the principal and told her Drew was in the wrong placement. Didn't help. The Gen Ed teacher went to the principal and told her Drew was in the wrong placement. Didn't help. It also didn't help that since the admin didn't understand TS or that anxiety OCD and ADD are co-morbid. They had labeled Drew a behavior problem. I was also labeled a problem parent.
We had finally had enough - after 5 IEP meetings in 3 months and more time in the principal's office than any mom should spend we decided to get an advocate. She got the ball rolling and the next thing I knew we had a meeting with the principal, the advocate and the superintendent of special ed! I was so focused on that meeting, it consumed me night and day. I was armed with TS information, IEP information. I was a walking talking TS IEP encyclopedia. Oh yea, did I mention the letter from the Pediatric Neurologist who treats Drew's TS?
All of a sudden the admin starts changing their tune. Scott and I arrived for the meeting. We start talking about TS and how it affects Drew. I very quietly hand the letter to the advocate who reads it and hands it to the superintendent he reads it. The superintendent then says he thinks now that everyone has had time to get to know Drew we all agree he is in teh wrong place. WHAT???? that was out of left field. He also tells us he as a background in Autism and understands the similarities. WHAT????? After hearing everything he concurs that Drew is in the wrong class. WHAT??????????????????????? We were being heard for the first time in months.
The next thing we know it is being discussed about how to handle Drew's math issues - only thing that is not on grade level. Also discussing how to handle the social emotional piece since we refuse to let the psychologist for the SPED class get near Drew (another post for another day). Then we start talking about next year and what school Drew will be going to. Colorado has school choice. Meaning we can petion for what school Drew attends. He could continue at his present school through 6th grade but there was no guarantee that he would be allowed to go to the JR. High with his friends at his current school. Changes are he would have to transfer back to his home jr. high. Our other option is to up root him one more time and put him back at his home school for 5th and 6th grade so he can transition with those students to Jr. high and have friends before that transition. I think the principal was relived when Scott and i started leaning towards moving him back to his home school. We have now made the decision to move him to his home school in the fall. The superintendent is setting up a meeting for the new principal, me and the superintendent to start the ball rolling. The superintendent is also ensuring that the staff will be educated in TS before Drew starts and that staff from the new school will be making visits to the current school to get to know Drew over the next couple months.
The best part? Drew spent today in the General Ed class for the whole day and loved every minute of it.
All it took was a whole lot of FAITH TRUST AND lots of people who love that little guy and know what is best for him. a dash of pixie dust didn't hurt either.
Since moving to Colorado it has been one fight after another with the school. The administration refused to get educated on Tourettte Syndrome. Since the admin would not educate, the staff could not get educated nor could the students. Every day it was a fight. Drew was in a self contained classroom in California - not because of a behavior issue but because it was a good structured environment He thrived. His teacher in California was the most amazing woman who saw the potential in Drew.
Since Drew's IEP from CA was for a self contained class room the district decided he needed to be placed with kids who had bipolar, ODD and other behavior issues. Not the best place for a kid who needed a quiet structured classroom. I couldn't even get him mainstreamed per his IEP.
In January I really started pushing for what he needed. In small bits and pieces they started allowing him mainstream time. The problem we were running into was that the kids in the Special Ed class were making fun of Drew and hitting him. Problem was no one was telling me. I would hear about it from Drew and then have to find out what was going on. I started pointing out that Drew had no issue with the Gen Ed kids and the SPED kids had marked him as a target.
The special ed teacher watched some videos from TSA and went to the principal and told her Drew was in the wrong placement. Didn't help. The Gen Ed teacher went to the principal and told her Drew was in the wrong placement. Didn't help. It also didn't help that since the admin didn't understand TS or that anxiety OCD and ADD are co-morbid. They had labeled Drew a behavior problem. I was also labeled a problem parent.
We had finally had enough - after 5 IEP meetings in 3 months and more time in the principal's office than any mom should spend we decided to get an advocate. She got the ball rolling and the next thing I knew we had a meeting with the principal, the advocate and the superintendent of special ed! I was so focused on that meeting, it consumed me night and day. I was armed with TS information, IEP information. I was a walking talking TS IEP encyclopedia. Oh yea, did I mention the letter from the Pediatric Neurologist who treats Drew's TS?
All of a sudden the admin starts changing their tune. Scott and I arrived for the meeting. We start talking about TS and how it affects Drew. I very quietly hand the letter to the advocate who reads it and hands it to the superintendent he reads it. The superintendent then says he thinks now that everyone has had time to get to know Drew we all agree he is in teh wrong place. WHAT???? that was out of left field. He also tells us he as a background in Autism and understands the similarities. WHAT????? After hearing everything he concurs that Drew is in the wrong class. WHAT??????????????????????? We were being heard for the first time in months.
The next thing we know it is being discussed about how to handle Drew's math issues - only thing that is not on grade level. Also discussing how to handle the social emotional piece since we refuse to let the psychologist for the SPED class get near Drew (another post for another day). Then we start talking about next year and what school Drew will be going to. Colorado has school choice. Meaning we can petion for what school Drew attends. He could continue at his present school through 6th grade but there was no guarantee that he would be allowed to go to the JR. High with his friends at his current school. Changes are he would have to transfer back to his home jr. high. Our other option is to up root him one more time and put him back at his home school for 5th and 6th grade so he can transition with those students to Jr. high and have friends before that transition. I think the principal was relived when Scott and i started leaning towards moving him back to his home school. We have now made the decision to move him to his home school in the fall. The superintendent is setting up a meeting for the new principal, me and the superintendent to start the ball rolling. The superintendent is also ensuring that the staff will be educated in TS before Drew starts and that staff from the new school will be making visits to the current school to get to know Drew over the next couple months.
The best part? Drew spent today in the General Ed class for the whole day and loved every minute of it.
All it took was a whole lot of FAITH TRUST AND lots of people who love that little guy and know what is best for him. a dash of pixie dust didn't hurt either.
Saturday, March 16, 2013
changes to diet
I am research fanatic. I am addicted to learning. It is like a drug for me. I had been seeing articles about Tourette's and diet. We had made an effort to become gluten free several years ago and we did a good job. At some point we fell off the wagon and went back to our old ways. I am not sure how Drew's tics were during the time we were GF.
My research has revealed that there may be a connection between many diseases and gluten. I am also finding many reports of milk and tics. Milk seems to increase them. I know soy milk can cause an increase in them as well. So we are going to try Almond Milk and see if we see a difference. In the next couple weeks we will also revert to our life style of being GF. Bob's Red Mill and Pamelas GF are good brands for GF. So I will be going back to them. We also love Eating Well Magazine for great recipes which can be altered for GF life style.
Drew has an aversion to many foods so it can be a challenge to cook for him. He is not a veggie eater. it is a texture thing. He is going back to OT thru Children's in the next few weeks. As the TS has gotten worse he has lost some fine and gross motor skills. The schools will only give OT from an educational standpoint so all they are offering is typing skills. He needs more. So the school is teaching him to type and Children's will be tackling motor skills and sensory issues which have also become worse as the TS has gotten worse.
My research has revealed that there may be a connection between many diseases and gluten. I am also finding many reports of milk and tics. Milk seems to increase them. I know soy milk can cause an increase in them as well. So we are going to try Almond Milk and see if we see a difference. In the next couple weeks we will also revert to our life style of being GF. Bob's Red Mill and Pamelas GF are good brands for GF. So I will be going back to them. We also love Eating Well Magazine for great recipes which can be altered for GF life style.
Drew has an aversion to many foods so it can be a challenge to cook for him. He is not a veggie eater. it is a texture thing. He is going back to OT thru Children's in the next few weeks. As the TS has gotten worse he has lost some fine and gross motor skills. The schools will only give OT from an educational standpoint so all they are offering is typing skills. He needs more. So the school is teaching him to type and Children's will be tackling motor skills and sensory issues which have also become worse as the TS has gotten worse.
Wednesday, March 06, 2013
I will fight for you every day of my life.
We have had a lot of problems with Drew's school and district in the past few days. Hell I take that back, since we moved to Colorado it has been a giant nightmare. I had another fight with them yesterday about bullying and placement for Drew (a topic for a later time) Tonight made it all worth while.
Drew: Mom you look exhausted.
Me: I am.
Drew: The school?
Me: yea. but will keep fighting for you and for what is right everyday of my life. Because that is what I do.
Drew: I know, that is why I love you
Drew: Mom you look exhausted.
Me: I am.
Drew: The school?
Me: yea. but will keep fighting for you and for what is right everyday of my life. Because that is what I do.
Drew: I know, that is why I love you
Monday, March 04, 2013
New Treatment for Drew
Drew has a very severe neck twitch. It causes pain. He has given himself whiplash several times and pulled muscles in his neck. When we saw the neurologist at Children's in January, she gave us a new option beyond medication. Today, Drew underwent botox injections in his neck.
Drew was a bit apprehensive. We did find out the hard way that he is allergic to the adhesive used to hold the numbing patches in place. That was the worst part for Drew. But the cream did what it was supposed to. The injections were administered without pain - all but the last one.
We were advised that the injections would not take effect today, tomorrow, or even the next day. But hopefully by the end of the week we will see some improvement. In two weeks we will see maximum effect. If it works then Drew should have relief for up to three months.
We know there can be side effects and we explained them to Drew. He decided it was worth it to at least try this.
This is just one treatment. We know not all treatments work for all patients. All we can do at this point is wait and watch and hope there is some relief for Drew.
Drew was a bit apprehensive. We did find out the hard way that he is allergic to the adhesive used to hold the numbing patches in place. That was the worst part for Drew. But the cream did what it was supposed to. The injections were administered without pain - all but the last one.
We were advised that the injections would not take effect today, tomorrow, or even the next day. But hopefully by the end of the week we will see some improvement. In two weeks we will see maximum effect. If it works then Drew should have relief for up to three months.
We know there can be side effects and we explained them to Drew. He decided it was worth it to at least try this.
This is just one treatment. We know not all treatments work for all patients. All we can do at this point is wait and watch and hope there is some relief for Drew.
Sunday, March 03, 2013
New Direction
Over the past year I have found my blog has lacked direction. I have written about many things family, friends, new job, moving. I have had very little motivation to write. Granted it has been a hectic few months. I think I have found my direction.
If you have read many of my posts you know my youngest son suffers from Tourette Syndrome. My husband and I adopted Drew at birth. He had a rough start and we knew from the beginning there would be challenges. My dad often commented that though he did not know why the Cosmos lined up and some force brought Drew to me for a reason.
I have often wondered why Drew came to us. I thought several years ago it was to be a fighter for what Drew needed. I was right to a point. I am Drew's mom, fighter, advocate number one to give him love. I am his safe place. The one place he knows no matter what he can be who he is and let his feelings known.
I have searched for websites and blogs chronicling other mom's struggles with Tourette Syndrome, an syndrome that gets little recognition and funding for a cure or research. It is a very misunderstood neuro biological condition that is often portrayed incorrectly on TV. When someone says Tourette's Syndrome, the first image is of someone who cusses and can't control it. That is a small part of Tourette. It is called Coprolalia and only about 10% of those who suffer with Tourette have this condition.
Drew has a severe case of Tourette Syndrome. He tics all the time. Even in his sleep. We are fortunate to have moved to Colorado where the Children's hospital is making progress in managing the symptoms of this disorder.
Facts about Tourette Syndrome
It affects more boys than girls
1 in 1000 have this condition
There is no cure.
It is a spectrum disorder.
OCD, Anxeity, and ADHD are co-morbid conditions. (Drew has all 3)
No two cases of Tourette are the same.
I have decided to use my blog to educate about Tourette as well as a place to vent and share our struggles, and day to day triumphs of Tourette. My hope is that I can inspire or help just one mom. I also hope to build a network for other parents to find a place to learn and help each other.
I recommend if you want more information to check out Tourette Syndrome Association.
I welcome you to our new journey.
If you have read many of my posts you know my youngest son suffers from Tourette Syndrome. My husband and I adopted Drew at birth. He had a rough start and we knew from the beginning there would be challenges. My dad often commented that though he did not know why the Cosmos lined up and some force brought Drew to me for a reason.
I have often wondered why Drew came to us. I thought several years ago it was to be a fighter for what Drew needed. I was right to a point. I am Drew's mom, fighter, advocate number one to give him love. I am his safe place. The one place he knows no matter what he can be who he is and let his feelings known.
I have searched for websites and blogs chronicling other mom's struggles with Tourette Syndrome, an syndrome that gets little recognition and funding for a cure or research. It is a very misunderstood neuro biological condition that is often portrayed incorrectly on TV. When someone says Tourette's Syndrome, the first image is of someone who cusses and can't control it. That is a small part of Tourette. It is called Coprolalia and only about 10% of those who suffer with Tourette have this condition.
Drew has a severe case of Tourette Syndrome. He tics all the time. Even in his sleep. We are fortunate to have moved to Colorado where the Children's hospital is making progress in managing the symptoms of this disorder.
Facts about Tourette Syndrome
It affects more boys than girls
1 in 1000 have this condition
There is no cure.
It is a spectrum disorder.
OCD, Anxeity, and ADHD are co-morbid conditions. (Drew has all 3)
No two cases of Tourette are the same.
I have decided to use my blog to educate about Tourette as well as a place to vent and share our struggles, and day to day triumphs of Tourette. My hope is that I can inspire or help just one mom. I also hope to build a network for other parents to find a place to learn and help each other.
I recommend if you want more information to check out Tourette Syndrome Association.
I welcome you to our new journey.
Sunday, February 17, 2013
Busy and adjusting
I have to say in many ways we are busier in Denver than we ever were in California. We still have our family time but it is different.
Last weekend we stayed close to home because of snow but the last few days have made me go WOAH!. Monday Drew now has Lego Club and rock climbing. Wed we headed to Children's to meet with the Rehab Doc who will be administering the Botox treatment in a couple weeks. a story for another post. Thursday I got to help with Drew's class Valentines party in his Gen Ed and after that I am more convinced than ever the school district is wrong and that the placement is so incorrect it is not funny. We now have an advocate but that is a story for another day. Friday Scott stayed in the City for the evening and got to spend time with people from his old company. He had a wonderful time. Drew and I hung out at home and watched TV. Yesterday we had a late brunch, did some shopping and then went to our friends house for a wonderful dinner. Today I am taking Drew swimming with a friend of mine who I have not seen since JR. HIGH.
We are still adjusting to life here and a new normal when it comes to routine. Sometimes we have to stop our selves and say "we have been here less than 3 months and things are still shaking out" Is some ways it feels like we have been here for a long time and this has always been home. Maybe it is because of the Midwest feel and life style? I know I feel more at home here. More relaxed, more in control. Still adjusting but this feels like where I belong.
Last weekend we stayed close to home because of snow but the last few days have made me go WOAH!. Monday Drew now has Lego Club and rock climbing. Wed we headed to Children's to meet with the Rehab Doc who will be administering the Botox treatment in a couple weeks. a story for another post. Thursday I got to help with Drew's class Valentines party in his Gen Ed and after that I am more convinced than ever the school district is wrong and that the placement is so incorrect it is not funny. We now have an advocate but that is a story for another day. Friday Scott stayed in the City for the evening and got to spend time with people from his old company. He had a wonderful time. Drew and I hung out at home and watched TV. Yesterday we had a late brunch, did some shopping and then went to our friends house for a wonderful dinner. Today I am taking Drew swimming with a friend of mine who I have not seen since JR. HIGH.
We are still adjusting to life here and a new normal when it comes to routine. Sometimes we have to stop our selves and say "we have been here less than 3 months and things are still shaking out" Is some ways it feels like we have been here for a long time and this has always been home. Maybe it is because of the Midwest feel and life style? I know I feel more at home here. More relaxed, more in control. Still adjusting but this feels like where I belong.
Sunday, February 03, 2013
Breakfast
One of the most important things when you move to a new city is to find a new place for weekend breakfast. We have found a place. It is called Breakfast on Broadway. The have a great menu. We found it by accident last weekend. Scott and I had dropped Drew off at a Scout event last week and decided to take some couple time and were driving down the road and saw this place. The parking lot was pretty full so we figured it must be good. We were right.
Drew has been having trouble eating lately. With the weight loss, we are willing to let him eat things he normally doesn't get to eat. This morning we went to Breakfast on Broadway and Drew had the S'more Pancakes. Panckes with chocolate chips, chocolate syrup, marshmallow syrup and graham crackers. He did eat more than he has in several days. We talk to the doc tomorrow about where we go from here.
He is now having some insomnia as well. Please keep him in your thoughts and prayers as we figure this out.
Wednesday, January 30, 2013
medical stuffs
Everyone who reads my blog knows about Drew and his Tourettes. It has been a source of frustration for him. We had a great doctor in San Francisco who Drew loved. Moving to Colorado meant a new doctor and building new trust. Not something easy for Drew.
Drew and I met with Dr. C on Monday. First thing we learned she trained under Drew's doc in San Francisco!!! As much as I liked the doc in SF I like Dr. C for other reasons. She is younger and has embraced new techniques that might help Drew. Week after next Drew will be getting a small amount of botox injected into the back of his neck. The hope and theory is that it will relax the muscles and decrease the neck tics. Drew was not too happy about the thought of shots but when asked which would be worse Tourettes or injections every 3 months that could stop the tics. He decided the injections would not be so bad. We are also adding Magnesium to his diet as this been showing signs of helping decrease tics as well.
Dr. C also suspects from what Drew is describing that he may be having seizures again. So next week we will be doing a sleep deprived EEG. If that doesn't show anything than he will be admitted for several days to the epilepsy unit for observation.
He is also being evaluated for his sleep. It has been proven that kids with Tourettes don't sleep well because their bodies don't shut down and they tic in their sleep.. This leads to an increase in behavior issues as well as decreased learning. Drew wakes up exhausted every morning no matter what time he goes to bed.
We are currently waiting for blood work to come back. Drew has lost 10% of his body weight in the last 17 days. That has me and everyone else pretty worried.
It appears that Drew also has ADD but we knew that. he can't be put on meds for it because they will aggravate the tourettes. He now carries a water bottle at all times because dehydration can increase tics.
Next week Drew will be giving a presentation to his class about having Tourette's. They will watch this video and then do a Q&A about the condition. I will be with him but this is his to talk about.
right now all I can do is have
Faith Trust and Pixie Dust.
Cathy
Drew and I met with Dr. C on Monday. First thing we learned she trained under Drew's doc in San Francisco!!! As much as I liked the doc in SF I like Dr. C for other reasons. She is younger and has embraced new techniques that might help Drew. Week after next Drew will be getting a small amount of botox injected into the back of his neck. The hope and theory is that it will relax the muscles and decrease the neck tics. Drew was not too happy about the thought of shots but when asked which would be worse Tourettes or injections every 3 months that could stop the tics. He decided the injections would not be so bad. We are also adding Magnesium to his diet as this been showing signs of helping decrease tics as well.
Dr. C also suspects from what Drew is describing that he may be having seizures again. So next week we will be doing a sleep deprived EEG. If that doesn't show anything than he will be admitted for several days to the epilepsy unit for observation.
He is also being evaluated for his sleep. It has been proven that kids with Tourettes don't sleep well because their bodies don't shut down and they tic in their sleep.. This leads to an increase in behavior issues as well as decreased learning. Drew wakes up exhausted every morning no matter what time he goes to bed.
We are currently waiting for blood work to come back. Drew has lost 10% of his body weight in the last 17 days. That has me and everyone else pretty worried.
It appears that Drew also has ADD but we knew that. he can't be put on meds for it because they will aggravate the tourettes. He now carries a water bottle at all times because dehydration can increase tics.
right now all I can do is have
Faith Trust and Pixie Dust.
Cathy
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