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!

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.

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.

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.

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

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.

we are making it

We are plugging along.  Drew seems pretty receptive to what we are doing and so far has done his work with out any fights.  He is reading on my Nook, computer time, writing letters.  Even though next week is technically spring break I am going to have him working.  He seems so far behind where he should be.  Tomorrow I take him to school for an hour for his language therapy.  He is not too happy about it but he needs to maintain his therapies.

I am ready for my hubby to be home.  Single parenting is not for me.  I don't know how my mom did it when my dad traveled.  she also worked full time and had 2 kids.  We head for SF next Wed for Drew's last appt with the Tourettes doc.  Scott and I will go in a few weeks for a wrap up and discussion on where we go from here.  Up until today the tics have been pretty level.  they are there and noticeable but not the intensity as when he was in class.  Today they seemed to be higher in frequency.  Not sure why.

I know I need to post pics because it makes blogs more interesting but just haven't done it.  I can post pics of a snoring dog if you want.  Think Skippy needs his aednoids out.

first day

Today was the first day back to a homeschool regieme.  We are still working with the school to get the Home and Hospital teacher worked out.  i didnt' want to let Drew go with out schooling until this was worked out so off we went.  First up.  Computer work on Synonyms.  then some math review.  Then a BREAK.  We are using Time4Learning.com.  I will be doing a review of it in the next couple weeks.  It has some great points and a few things i am not too keen on.  We headed to trader Joe's and to grab some lunch.  While we were driving I asked Drew if he was all right with returning to doing school at home.  He said if it kept him from being hit and teased about his Tourette's he was all for it. WE came home and he read me Henry and Mudge get the Cold Shivers and then i introduced him to a long term project.

He loves Pokemon.  So I  have him designing his own card game.  He has to come up with the characters, their weapons, powers, who can battle who etc.  He seems to like the activity.  The main thing this time around is that I know now to keep it interesting and change up the activites so Drew does not get frustrated or bored.

I am back

I tried the world of Word press but it was not for me.  I thought I wanted to be a blogger of deals and steals but I want to come back to my little corner of the world and blog about me and Scott and Drew and homeschooling ( yes the H word) and Phil and Betsy and life and love and all things me. This is where i belong.  I have to figure out how to put some of the other blogs posts on this site so i don't lose them.

Where do I start?  We have been fighting the wonderful world of bullies and drew getting beat up and dealing with the school for not telling us.  Drew is asking for home school again.  He is tired of it and wants to feel safe.  We meet with the school again on Monday for an emergency IEP and I think the will be seeing things my way for the end of the this year.  I can file lawsuits with the best of them.

We are also finding that Drew may have APD (auditory processing disorder).  So off to the audiologist we go Monday afternoon.  Tomorrow Drew and I are off to San Francisco to meet with the Tourettes doc at UCSF.  Scott and I went last week and now Drew gets to go three times then a plan of action will be put into place.  They are also putting us in touch with an Asperger specialist at UCSF to help as well.

Wedding plans are on course as far as I can tell.  They tell me when they need something.  but otherwise i stay out of it.  Safer that way.

Scott is getting ready to run a half marathon.  His goal is to finish in the top 10 my goal would be to have fun and finish.  I have started going back to the gym.  well until the doc benched me because I tore a muscle so now I am waiting for the all clear to go back.

Aspergers

My husband wrote a very profound blog on what it is like to live with Andrew. It gave a day in the life instance that we have to deal with regularly. It is hard for people not living with a child like Drew to understand the day to day struggles we have. I hope you take a minute and read Scott's blog post

Aspergers

I wouldn't change anything but there are days the struggle seem so overwhelming but Drew is such a wonderful fun loving little guy I couldn't imagine doing life with out him.

back again

The past few weeks have been HELL. I have been in pure survival mode. The docs tried Drew on a new med. It was causing rages every couple hours. It was crazy. Even he didn't understand. We couldn't get school work done. It was taking 2 hours to do 14 math problems. I was so ready to chuck everything in and send him back to school and make it their problem. I hated being around my son and I hated myself for it. How could I not like being around my son. He was saying totally hateful things and I didn't know where to turn.

Monday I called his neurologist and told them we had to take him off the Depakote because it was going to be me or him. They got me an emergency appt for Tuesday afternoon. I didn't give him his Depakote on Tuesday because Scott was out of town and I knew I could't take it.

When we got to the appt. Dr. Rainia came to the waiting room personally to get him. We went into a conference room with 2 med students. We reviewed Drew's history and Dr. Rainia noted that all the meds we tried had had the opposite effect. Respirdal caused depression (it is a anti depressent) Abilify was to improve the Tourette's - it made it worse.

He went on to explain to the med students that with kids like Drew who had the opposite effect on meds that they had to think outside the box. He explained to all of us that by accident he had discovered a drug for Parkinson's and Restless leg Syndrome that worked in about 50% of kids. Was I willing to try. HELL YES!!!! I knew I couldn't take anymore of what had been going on.

Drew took his first dose Tuesday night. Wed he got up and got dressed, did 3 hours worth of school work without fight. Went on a play date and there were no arguments the whole time. CAme home ate dinner, took his bath, never balked or fought back when told no. NO rages . he was amazing. took another dose last night. same thing today. Did his work (it was a short day because of getting ready to camping this weekend) didn't get upset when he made a mistake on his spelling test. He caught hte mistake and corrected it. He didn't get upset when he only got a 99 because he forgot the E on "have" in his dictation. he even took out the recycling with out being asked!!!! He even told me he loved me. I haven't heard that in a long time.

He has been pretty hyper but I am not sure if that is because now that his mind is clear so much is racing that he can't keep up or because we haven't started the daytime dose - that starts tomorrow in addition to the night time dose.

I keep waiting for the other shoe to drop. But if this works, I will be eternally grateful. The past 2 days have been amazing. I hope they keep up. I will keep you posted.

got off track

So last week was an iffy week in the HS world. We started off on a great note. Then things went South. Way South. Drew's Tourette's was in full swing. Even with the meds. Waiting to hear from the docs. We did finish our unit on sharks. YEA!!!! We did spend Friday at Discovery Kingdom. That was a great day. Still had some major twitching and Drew is showing some new tics. He is becoming aware of them and is becoming frustrated he can't control what is going on.

I haven't worried too much about not being in school full swing since it technically doesn't start until Monday. Still doing daily reviews. Only thing I don't like about South Sutter is that they don't order books until school officially starts. So that means we don't get curriculum for a couple weeks and I am having to supplement until then. Lately been working on vowels. He can recite them and sorta gets the difference but we shall see what this week brings.

I am looking to start writing articles on homeschooling. I have found that while there is lots of info out there not much pertains to those starting out. All the articles assume the reader has knowledge of how it all works. Guess what most don't. Everything I have learned has been by trial and error or by lots of research or time on the phone. I want to start sharing what I have learned and help those just starting out not fall in to the same pitfalls I have or just share the home schooling adventure with others. The budget issues in CA are forcing more and more families to HS and I would like to be a source they can turn to for easy reading and to know there are people out there who understand their journey as well. Our journey has been difficult but I have tried to deal with it in a humerous way that I would like to share.

Phil starts school in a week. He is back in the fraternity house. Not sure if I mentioned the alum board bougt a new house. The old KAT house. I guess the guys love it. I like the fact he is not living in a fire trap anymore. He is not happy about having a roommate. First time in 20 years he has had to share a room with someone. This could get interesting. He is glad to be out of Mike's house. Away from Hunter. I am glad they had the summer to build some sort of a relationship. I think now that Phil is out of there it will continue to grow. But Phil did see why I left Mike all those years ago.

I realized over the past few months I havne't been ending my posts like days of old so....
Faith Trust and Pixie Dust to all my readers

Cathy