Summer come and gone

I can't believe summer came and went and I didn't blog once.  Guess we were having too much fun.  Here are some pictures from our crazy summer.  Drew went away to camp for the first time.  Round Up River Ranch.  He spent a week with other kids who have TS and other neurological  disorders.  He loved every minute.

Drew and I went to Boy Scout Camp as well.  That was not the most positive experience. Scott came for the last night

We started geocaching this summer.  Here is Drew finding our first cache.  

A very generous friend gave Drew the gift of a life time.  Stay tuned for that story.

Grandma came to visit.  Skippy was very happy to see her.

We are back in the swing of school - in between dr appts.  I have found some amazing things that Drew is enjoying to supplement.  Now that we are back and things are better I will be updating daily with reviews and updates.

ALLERGIES?

We are home from a whirlwind trip to Kansas for a wedding some birthday celebration and seeing cousins, grandparents, brother, SIL, and many many friends.  Not quite 2 weeks ago we found out Drew was allergic to wheat, soy, all tree nuts (not just peanuts) sesame and several other things. His environmental allergies were changing because of moving to a new state and they decided to test for food allergies as well.

That being said we immediately took all wheat and as much soy as we could out of his diet.  The difference is night and day.  He is more responsive, calmer, handled a our trip like a champ.  He saved the night at the wedding by getting help for someone in a bad situation.

By accident we found out he was allergic to oranges last week.  During food therapy they decided to try oranges.  He was squeezing juice in his mouth and within minutes his eyes swelled, throat started itching and nose started running.  He has not had oranges since he was little bitty because he hated the texture.

He didn't complain today when we stopped at Wendy's on the way home and he had to eat a packed sandwich (had a minor fail in packing food and only packed his food when we left kansas to head home.)He says he is not noticing a difference but so many people told me this weekend how different he acted.  My dad saw him 3 weeks ago and then saw him this weekend and said the difference was night and day.  Taking him off of wheat is not going to make the tics go away but it is helping his attention and moods.

I am a bit miffed about one thing.  Since he was little he has suffered from bowel issues.  NEVER did any doctor connect a possible food allergy with the bowel issues.  His bowel is severely damaged at this point and we have been told it could take up to two years for it to repair itself.  I think about all the meds and things we put him thru and the whole time there was a "simple fix"

The first few days there was lots of grumbling and grieving about losing his fave foods. I totally understand.t It would have been easier to find this out when he was 4 before he knew about all the amazing foods out there.  It is a grieving process.

I am learning fast about label reading and we are cooking at home a lot more. I am carrying an epipen and benadryl everywhere we go. I have great friends who have pointed me to a few places that have good recipes. I have found a good bakery that can do GF brownies and in Boulder I have found a place that does GF breads.

the district just won't leave us alone

When we decided to pull Drew out of school and seek alternative education placement we found Spiral Academy.  A friend who had to go the home school route recommended it.  It is a perfect fit for us.  It is a private online  school that has little oversight in how we choose to homeschool.

Friday as Drew and I were driving home from running errands my cell phone rang.  I answered it (thru the car bluetooth) It was the school district informing me that I had not filed the proper paperwork to home school Drew and he was being considered truant.  I told them he attended a private school for homeschoolers and I had filed the proper paperwork with the district on April 1 when I removed him.  I asked why they thought we were home schooling.  They didn't answer that.  I suggested they contact his previous school and ask where the paperwork was.  Per Colorado LAW since we pulled him out and enrolled him in a private school we did not need to file a 14 day intent to homeschool letter.

The truant office told me they didn't recognize the school in question and since they didn't we were breaking the law. The school is registred with the state so it doesn't matter if the district recognizes them or not.  The STATE does.  

Drew was hearing this conversation because it was thru the car and he got very upset thinking the district was going to make him go back.  That broke my heart.

I got home and called the director of Spiral Academy.  She had never heard of this and tried to call the truant office to discuss it  but of course they had left for the day.  She said the district never requested Drew's records which she thought was strange.  She also told me the district we lived in was one of the worst when it came to homeschooling and would try to exert their force on us.  

It is just one more instance where the district acts as a bully. I haven't heard yet today if the director of Spiral Academy and the truant office have touched base but I know I am in compliance and I honestly suspect that certain someones are behind this but we have no proof.  So we move forward and wait to see what happens but Drew won't be going back.  PERIOD

not a typical 5th grader

One of the things that drove me nuts about Drew's old school is they would always say that things Drew did were not "typical" 5th grade behavior. Well, ummmmm, Drew is not a typical 5th grader.  He has a neurological disability that needs to be accommodated according to federal guidelines.  That never happened.

Drew tics A LOT.  ALL DAY AND ALL NIGHT. Moving 24/7 is bound to make a body tired. He is also on meds that can make him sleepy.  An accommodation that we tried to be put in place was that he be allowed to go rest if he was overly tired.  We were informed that being tired was not typical behavior and they refused to accommodate it.  Everytime he would dose off in class they would call me and force me to pick him  up.  I continually pointed out that other districts had accommodated kids with TS by allowing them a quiet place to sleep for 30 minutes or so if needed.  It was not an every day thing or even an every week thing.  But once in a while it would happen. I was told that there was no way the school or district would allow such a thing to be accommodated.  If he had a diagnosis of narcolepsy it would not have been a problem.

So today, Drew has done math and spelling.  Then this happened during silent reading.

It happens we adjust and move on.  too bad public schools can't do the same.

Experiment on having Tourette's

I never truly understood what it was like to have TS until I saw a demonstration on a DVD for educators. It is hard to explain here but I will try. 

Get a group of friends together. Tell them that they have to write the Pledge of Allegiance in 90 seconds ( a timed test). Sound easy right? Not so fast.

 Have one person be the time keeper. Every time they clap their hands you have to shrug your shoulders, turn your head to the side and blink your eyes. the time keeper should clap their hands about every 8-10 seconds. And you have to cross out every third word and rewrite it because you have OCD as well. And you have to continually move your left leg because you have ADHD.

 When I watched this it made me cry. I never realized how much work it was to have TS.  I did it with the DVD and got a momentary idea of what it was like.  trying to keep up and get it done with the movements was crazy.  It is no wonder kids with TS get so frustrated.

Grab some friends and give it a try. Let me know how it goes. 

remember 90 seconds only.

Reentering the Homeschool world

I loved when we homeschooled Drew when he was in 1st grade.  I liked the freedom it gave us to explore ancient history, the world  around us, current events, art...whatever we wanted.  Drew was shocked one day when I told him to go watch some videos on TV during shark week.  He could not wrap his mind around that those videos were counted as school time.

Let me back up.  When my older son was in school he went to a private Episcopal school who embraced learning outside the 4 walls of a class room.  It was then that I understood that ANYTHING could be a learning opportunity if we let it.  We took Phil on a vacation to Albuquerque when he was in 7th grade.  His teachers supported this 110%.  They changed his assignments to that they fit within what we were doing. For science he had to be able to explain how a hot air balloon worked,  For history we traveled the Jemez trail and have some great family jokes that still get said all these years later.( I still swear tarantulas can jump.) I can't remember what was done for english.  This experience opened my eyes to a new type of learning. 

So now back to homeschooling with Drew.  When we did the first time parts of it were a disaster.  His Tourette's, OCD, Anxiety, and other issues were not yet diagnosed.  So consequently, what I expected and what he was able to do were two different things.  This time around it is different.  Drew has a better understanding of what is expected of him.  I understand his TS and his need for breaks, and more hands on experiences.  We have talked and  he understands that spelling and math will continue over the summer.  He is behind in math and we want him caught up. 

The Spelling You See is wonderful.  Today I ordered Teaching Textbooks for math. It is done on the computer and it is self directed.  I am really wrestling with history. Before we did Story of the World and I am seriously considering it.  I feel that history doesn't make sense if it is not taught in order.  How can someone understand The Fall of the Roman Empire if they don't have the years of history before it?  It has lots of hands on experiences with it and supplementing it with Art  in  History.  

While I honestly don't care what they are doing in public school I do think that on some levels I need to ensure that he does some of what they do so I am thinking about a civics type block on how bills become law and the branches of our governing bodies.  Maybe a trip to DC might top it off. (being a travel agent could come in handy)

I enjoy the freedom of homeschooling.  I also like that I can tailor what we do to his interests on many levels. Unit studies can be fun.  It adds something to the day other than the basics.  Field trips are also great.  They break up the monotony of the week. I feel like Auntie Mame opening up a new world for Drew.  hopefully we will embrace the philosphy that LIFE IS A BANQUET AND MOST POOR SUCKERS ARE STARVING TO DEATH!!!! and we are going to step up to the banquet table of learning and embrace it all!

a minute in the world of tics

Yesterday was rough in Drew's world.  All of a sudden he is developing new tics.  We aren't sure why.  When we first took him out of school the tics diminished.  We know tics come and go and there is no reason for it.  Drew has been complaining lately about having strange urges in his legs. He says he feels like he needs to pull his legs off.  We are not sure if now he feels safe and knows he can tic and no one will say anything.

We have noticed that many times during the day he is getting up from work or play and just standing in a corner.  He says it makes the pain go away for a few minutes.  He is becoming resistant to going out anywhere because he is worried he will have to do this and people won't understand.  The only place he likes to go is to our favorite breakfast place on Sunday AM.  They all know him there and he has his fave waitress, Dawnelle. She also watches Drew when we go out of town. She is a child therapist so she understands him very well.

I am insane

One thing about Drew is he can be impulsive.  It is part of the executive function issues that comes with Tourette's.  I have told by many parents who have been where we are, that it will pass.  His brain just has to catch up.  That is one of the many things the school did not understand  It is part of the neurological process of Tourette's.  It got very frustrating at times. We know some things are not "typical 5th grade behavior" but the are typical Tourette's behavior.

We want Drew to have all the experiences possible that all kids his age have. He has no desire to play sports but he wants to go to camp.  He will be going to 2 camps this summer.  The second one he goes to will be Boy Scout camp.

We know that Drew would do alright at camp but we also know that things could go south fast if he gets overly frustrated and there is no one who knows the ins and outs of Tourette's.

Scott can't take a week off  in July so I am going to Boy Scout camp as an adult leader.  Anyone who knows me from my child is now laughing their BUTT off.  I HATED scout camp.  It made me quit scouts when I was 11.  I couldn't wait to get away from that place and never go back. The heat, the humidity in Kansas in July, the bugs, the camp food.  YUCK on all counts!

 I HATED camping until we moved to California.  We started camping with our homeschool group.  We would go a couple times a summer for 3-5 days on the coast.  We would go up around Fr. Bragg or the Mendocino area. I loved falling asleep listening to the ocean crashing on the shore.  It was so relaxing and peaceful.

Somehow I don't think this is going to be as relaxing as camping on a beach watching the birds fly over head and the surfers  in the waves. I think it will be about 34 boys and 6 adults and no wine and cheese for a week.

I will survive, I will be better for it and Drew will have an experience of a lifetime.  Who knows I may enjoy it so much I will do it ever summer. Or maybe not.

Spelling You See

Drew hates spelling.  The idea of memorizing a list of words is TORTURE to him. My friend Shecki writes a blog about homeschooling her kids.  She has homeschooled for many many years.  She knows every kid is different and adjusts her lessons to fit each of her kids.


She did a blog post about Spelling You See and how it was working for her kids.  I talked to her about it and decided to at least try the sample lesson online with Drew.  We had a huge hit on our hands.

It doesn't give lists of words. The child concentrates on a paragraph for the week. I read it to him, he reads it to me then he has to find a letter combination for all the words in the paragraph.  Drew then copies snippets of the paragraph the first three days.  Day 4 and 5 he does dictation.  One of the things about Tourette's, at least in our case is that Drew has problems with short term memory.  Spelling words and then not using them again doesn't work for Drew.  This builds each week on past lessons so he uses some of the same words but at the same time builds his vocabulary.

For Drew there is no monotony of doing the same thing over and over.  The lesson takes about 10 minutes. Then we can move on. I only wish math was this easy.

This is about a program I purchased my self and received no compensation or free items for my opinion

never meant to be a bully.

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.

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.

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.

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.

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:

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!

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.