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.

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.

 

THE FACE OF TOURETTE'S

THIS IS THE FACE OF TOURETTE'S

THIS IS WHAT TOURETTE'S CAN DO

 

 

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.

Spur of the moment

It was a spur of the moment decision. A chance to make a memory and I jumped on it. We had been hearing for days about the space shuttle Endeavor heading to LA to become part of museum. But first it was going to grace the northern California sky. It was to fly over the capitol at 930 this morning. I was literally getting Drew out the door to head to school when the enormity of the event overtook me. I sent Scott a message that we were headed down town. Called Drew's teacher and told her he would be late. So we loaded up. We got downtown about 815 and heard on the radio that the shuttle had just left Edwards AFB and was headed toward us. I managed to find some 1 hour parking and hoped I would not have a ticket when we got back. There were people scattered around the back of the capitol and Drew and I took up spots. I chatted and Drew ran off to check out the turtles and fish in a nearby pond with other kids.

Here is Drew waiting. about 915 people started coming out of office buildings and waiting. One lady was talking to her husband who was on a near by roof top. 930 We heard the shuttle was flying over Stockton 937 it was over Highway 99 in Elk Grove HERE IT COMES!!!! I was so focused on making sure Drew saw it I forgot to take pictures. OOPS. We saw it momentarily before it disappeared behind the other side of the Capitol. WHAT A GYP! Would it come back? The crowd starting disperrsing. We waited. And were rewarded. The pilot flew back over our side. It was huge - but I was shocked at how small it was. Once again I forgot to snap a picture. I was in awe of this incredible machine that had orbited the Earth 4671 times, went on 25 missions, traveled almost 123,000,000 miles, spent 296 days, 3 hours, 34 minutes, 2 seconds in space, and docked with the International Space Station 12 times and MIR once.

This is what we saw the first time it passed by  Pictures courtesy of KCRA.

We were here somewhere.

This is what we saw the second time.

It was memorable and to share it with Drew was wonderful.

Protector/for my boys

When Phil was little, before Scott, it was just us.  From the time he was two until Scott and I started dating,when he was seven, all we had was each other.  We had several songs we would sing to each other at different times.


Last night, Drew was having a rough time.  He was scared.  He has a fear that he can't over come.  He is scared of gollum from Lord of the Rings.  I can't say it is irrational because we all have things we are scared of.  This is his.  It is a paralyzing fear.  When Phil was scared as a kid I sang him a song - this was before the days of YouTube and Ipods.  he had to endure my voice.  (Sorry Phil).  I hope both my boys know that Nothings gonna harm them when I am around.

Last night when Drew was so scared to go down stairs the song came back to me.  I played it on my phone and sang to Drew at the same time.  He was finally able to go down and do what he had to do.
After he came back upstairs he said "thanks for making me brave mom"  That is what a mom is to do isn't it?

This song will be true for my boys for ever and I hope someday they sing it to their children. I like this version better because the first time I saw it Barbara Streisand was singing it to her son.

Love Mom

My lists have lists

How did we get to 19 days until the wedding???? Someone tell me where the time and my planning skills went!  I sat down yesterday to make my to-do list.  Stop mail, mail stuff to home office, pick ups scripts, call caterer, call cake decorator, order clothes, get camping equipment checked out, grocery shop, order clothes, change date of house sitter.... It goes on.

All of a sudden I had to make a grocery list for camping, a list of what needed to be replaced or added to camping gear, what clothes to pack for both trips. How do lists end  up with sublists?  I draw the line at microlists for the sublists.

I am slowly crossing stuff off the master list.  But adding to the sublists. How is that possible?

Not sure if I mentioned that Scott is heading to San Francisco for meetings on June 25 and 26.  Which is why there is some urgency to get everything done in the next four days before we go camping to unwind before getting wound up again.  The latest plan is for Scott to take the train to SF on Monday.  Tuesday Drew and I will pack the car and head to my haircut.  As soon as it is over we head to SF.  Meet up with Scott and go to the hotel.  We leave at 645 Wed AM so it made the most sense to stay in SF.

I found this great site  PARKSLEEPFLY  In searching for a hotel in SF I found many charged to leave your car when you fly out.  This site has great deals on hotel/parking combos.  It was going to be MEGA bucks to stay at a hotel and then put the car in airport parking.  Most hotels only allow a 7 day park your car and fly then they wanted to charge 8-15 dollars a day after that.  When I found this site I found a room AND 14 days of parking for 109.00.  I like that price.  Granted it is not the RITZ but the reviews indicate the rooms are nice and clean and it is only for one night.

Thinking about a quick trip to Disneyland in August.  My friend Elaine is going to be in SD with her family and is going to drive to Anaheim to meet us.  I am so excited to see the new CARSLAND and Buena Vista Street.  Lines are reported to be horribly long but I can get around that.  Not focusing on that until after the wedding but I think after all of this I (we) deserve a couple days of down time - don't you?  Besides it is really for my clients that I am going.  So I can give them my honest opinion of the new attractions. (SURE)

Well the items on this list won't cross themselves off.

C

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.

weekend

Thursday Andrew and I made our trek to San Francisco to meet his Tourettes doctor.  It was an adventure to say the least (the VERY least) But I am happy to report that we made it home.  I get to fight a 100.00 fine I got because I thought the stupid MUNI subway read both of our tickets but apparently it only read Drew's.  When you get off the subway during busy times there are cops waiting to ensure you didn't ride for free.  I didn't ride for free but their stupid machine shows I did.  HUMPH.  Now I get to ride a letter explaining what happened and hope that they waive my fine.

This Doctor does not see the Asperger's in Drew.  so back to square one there.

We get to do it again this Thursday.  Yippee. Yesterday we had a great day.  In the morning we met with CHILL - our home school group and learned about wind and made kites and listened to stories about wind.  While all this was going on  my phone was sending alerts about the real power of the wind in the way of tornadoes that were ravishing the south.  Wish we could have taught about that.  Then home we went.

Last night we went to see The Lorax.  Wonderful movie.  I can't believe it was never on the read list to Drew.  We read so many other Dr. Suess books but not that one.  Bad Mom.  But I will be rectifying that soon.

Today drew is enjoying some down time watching movies while Scott is out for his ride.  ME?  I am supposed to be doing my final Statistics paper for my class.  That is a blog post unto itself.  And I will be so glad when it is over this week.  Scott is also going to the National Homemade Bike show this today.  Not sure what that is but I am skipping it.

I did get my grocery shopping done this morning.  I love that Bel Air allows me to place my order online.  They pick the groceries and when I get there I push a button tell them I am there and they bring the groceries to my car.  Can't get much simpler than that.

I am also preparing for the IEP meeting we have Monday.  Yet another blog post.  Drew does see an audiologist Monday afternoon.  There are several docs waiting to see those results.  I have to make sure I take all the information to the appt. so the results get sent.

So here I sit at my computer doing everything possible to avoid writing my paper.

rite of passage

Last night was a rite of passage for my youngest. He was allowed (under VERY strict supervision) to like actual fountains. He was so excited. Took me back to when Phil was allowed the privileged.

There is something about seeing that sense of entering the realm of tweenhood and the pride both boys felt when we told them we felt they were responsible enough to start lighting fireworks. Drew asked if I was proud of him for being responsible. My heart was busting at the seams when he actually gave me a kiss (not something done often by Andrew)

It was a good Fourth but like always something is missing when Phil and Betsy are not here. They had their own fun with Phil's biological grandparents in Topeka. They move in to their new house this month. Another rite of passage.

I use to dread these moments when I realized my boys were moving on to a new milestone, but anymore i embrace it and smile at what Scott and I have done as parents.

new family member

a few months ago we lost an important part of our nuclear family. Doris the hamster died. Proper burial ensued. Drew within 10 minutes wanted know when we would be getting a lizard. He had been asking for a while that if when Doris died if he could have a lizard. I am not sure where he picked up the name Doris but it bothered me that he named his hamster after my favorite great aunt. But I digress

Scott had an all day meeting today. And seeing as how last year when Scott was at this same meeting we became the proud owners of Skippy, it seemed fitting that the lizard joined us today.

The weather here has been horrible. It is usually in the upper 80's and we are all in shorts and t shirts. I still haven't put my sweaters away this year. We haven't even set up the pool yet and the season is starting to get short. Today it rained all day and maybe made it up to the mid 50's.

Tomorrow will be the same. Scott has to be in Davis to work a State Championship bike race. I went out today and bought him a golf umbrella to help keep him semi dry. I got the biggest hand held umbrella I could find. it is 68" across. Drew and I will be staying home and dry, cuddled in my bed wathcing movies and eating whatever junk food we may have in the house and that isn 't much. Scott will have the car so we can't even go get goodies.

Back to our new family member. So this morning drew and went on our search for a bearded dragon. Not my choice but in my research it would be a good first lizard. I got to talking to the nice young lady named Stephanie about what we were doing. She could see that I had reservations about the bearded dragon. She showed Andrew a leopard gecko and he loved it. We bought all the stuff and took it home and got the tank set up. We had to run a couple errands after that then back to the pet store to obtain our new friend, and crickets, and meal worms. I will be obtaining crickets every couple days for the next few years from what I now understand. The meal worms live in hibernation in the fridge - I only have to get hem once a week because they are sold in bulk of 50.

We are now the proud owners of CAMO the leopard gecko. Drew and Scott wanted to name it Phil but I nixed that one. Feeding it crickets isn't as bad as I expected. I just open the plastic bad and dump. I can do that.

On the way home from this adventure I told Drew I needed to rest because it had been sucha busy morning and I was getting tired. He told me "well I guess that can be your reward for being such a good little mommy today." GEE THANKS

adoption and other stuff

It has been an interesting week around here. Drew and I have some real heart to hearts. We are seeing more normal 9 year old mischief. YIPEEE!!!! He tried to juggle - with rocks and broke a porch light. He is riding is bike without training wheels and is starting to build ramps to jump off of. Yesterday is my favorite. He put on is army camo jacket and hat, took brown acrylic paint and painted his face and climbed a tree to see how well camo techniques really worked. They did. I was so busy trying to get dried acrylic paint off his face I forgot to get a picture. his therapist is wanting us to attempt to put him a regular class room next year for 2 hours a day 2 days a week. That is HUGE!!!! He is about to graduate from OT. He is trying new foods on a daily basis. Another HUGE!!!!!

We were driving to therapy the other day and he started asking about the difference between birth mom and mom. I explained that a birth mom is just that someone who gives birth to you BUT a mom is the one who takes care of you, stays up with you when you are sick, goes camping - even when camping is not her favorite thing, buys pet lizards and feeds them crickets even tho she hates both, cooks, cleans, reads, hugs, does homework, kisses scraped knees, puts up with Disney channel, and a million other things. He seemed to grasp that. we talked a little more about what I do as a mom. several times during the conversation I reiterated that his Birthmom did love him because she chose to give him to us because she knew she couldn't do all the things that we do. He said I know A***** loved me but it still hurts.....

WOW. I assured him that he is not alone in that. I told him it was OK to have those feelings. Many adopted people feel some hurt. It may not go away but how he chooses to deal with it is key. I can see how far his thought process on the adoption issue has come in a short time. All we can do is be as open and honest as we can be. That will get harder with time.

homeschool

Bet you didn't think I would be writing about this topic again for a long long time did you? On the way to school this morning Drew told me we needed to talk. GREAT I thought not knowing what was going to come through that little mouth. He asked when he could go back to home school. You see, he explained he is bored. The things they are doing in his class he has already done. In fact, He has lost some of the skills I taught him about writing paragraphs because those aren't topics until third grade and giving presentations (like we do for International day) is not even broached until 5th grade.

Drew asked if I could supplement what was going on in school with some things at home. He misses ancient history. So I am frantically searching for copies of Surley English grade 2 and 3 as well as Teaching Textbook unit3. He also wants to find Story of the World and our Bible pack and start those again. HE told me this way he would have the best of both worlds.

I did tell him we would not revisit homeschooling on a permanent basis until he was ready for 4th grade or until his therapists felt he was ready to handle it again. I would give anything to start now but I want him to be a little more ready to understand and handle it.

So now Drew is a schooled/homeschooled kid.