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

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.

progress

We are making progress in the foods Drew eats. For the longest time it was only carbs. It got to be very challenging and VERY unhealthy. In working with his OT, she came up with a way for him to try new foods. He gets to be a scientist. When he is introduced to a new food he gets to examine it for color, textures, smells etc. Then he has to try it. In some cases the first try may only be a lick but he is not allowed to say he doesn't like something until he has journaled about a food 10 times. I am happy to report instead of just potatoes and corn on the cob he now eats dried bananas, snap pea crisps, sweet potatoes stawberries and blueberries. He has ruled out for the time being freeze dried mango, kiwi is iffy at best. He has licked broccoli and asparagus and the jury is still out on those but in our eyes that is MUCHO progress.

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.

SKOOL

I am a homeschool mom. I say it loud and proud. The past 2 years being home and schooling Drew have been remarkable. I have learned a lot. I also learned a lot today.

When I picked up Andrew from school his teacher escorted him to the car. I am thinking "GREAT! is the real Drew finally coming through?" Having a teacher walk your kid to the car is not something you want.

Instead, Mr. Weidel walked to my side of the car and showed me a note that Andrew had slipped to him. All it said was " i licke skool" It spoke volumes.

I have defended home school for the past 2 years and I honestly feel it is the best education most kids can get. But there are exceptions. Drew being one of them. He loves the structure of school. He loves the socialization of school. I will continue to be a home school mom at heart but for now Drew is where he wants and needs to be. I want him to love learning and for him school is where it happens best.

may be getting somewhere with school

Today I am thankful for the new program specialist that will be working with us to place Drew in the proper place in the public school system. She took the time yesterday to meet Drew and I at his favorite park. She wanted to observe him. She did get to witness a melt down which was nice. She has some good ideas on what is best for him and I agree with her on just about everything. We have the official IEP on Friday morning where everything will be decided.

They are offering at home tutoring until after the first of the year. Then he will be starting in an ED class with increasing time over several weeks so he can adjust. I think he will be placed in the 3rd/4th ED class since he is 8 but only in second grade. that way he can be there for several years and know the routine instead of going to one school for 5 months then changing next year.

After fighting the school district for 2 years it was refreshing to meet someone who appeared to have Drew's interest at heart.

back

The past few weeks have been very emotional in our house. We got a new diagnosis for Drew. They think we are looking at childhood onset bipolar. It does explain a lot of things. But to hear them actually say it was devastating. I cried for 2 days. But I realized it could be a lot worse and moved forward. However after 2 melt downs one that almost caused us to call 911 to have him admitted to the hospital several things became apparent. One I can no longer home school Andrew. That breaks my heart. Maybe in a couple years we will try again but now he needs the structure of a special class room. I just am unable at this time to give Drew what he needs to be successful.

Secondly, I realized how hard the last 3 years have been on me. We moved to ABQ, Phil was in a horrific wreck and had to have surgery. Then Scott had a perforated colon and 2 pulmonary embolisms. He survived 2 surgeries and recovered. Then as he was getting ready for his first bike race after that event he was hit by a car and had a broken collar bone. That didn't heal right and requires surgery 6 months later.

For the last 3 years I have focused on everyone but me. That is the way I am but now I am tired, hollow, empty, lonely, and just plain exhausted. I broke last night. I cried for 3 hours. It all just came out. I cried for all that had changed - as far back as my mom being sick, losing her and my grandparents, the changes in my dad, the relationship with my sister the list goes on. It was a mouring of sorts.

I have spent today pretty much on my bed doing home work, sleeping, thinking and just being by myself.

I started looking at random blogs and saw that many people were taking the month of November to blog daily about what they are thankful for. It got me to change my way of thinking. I should not be having a pity party so I resolve for the next month I will do just that. Everyday talk about something I am thankful for. God has blessed our family in so many ways. My husband is still alive, my son is about to graduate from college, my younger son can be managed with medication and lots of teaching by those more qualified than me.

A friend whose blog I follow annonomously had this song on her blog today. And I think it is a good place for me to start.

Cathy

Unit Studies

I think I may be getting the hang of this. This school year, so far is much better than the last. We are having fun. I am not nearly as uptight. I see lots of progress being made.

I attended a class a few weeks ago on unit studies. This used to be how school was taught. Most of the subjects were incorporated around a topic (writing, history, science, art, English). So I decided this year I would try my hand at using unit studies to teach Drew about the ancient civilizations. We just finished Mesopotamia and will start Ancient Egypt next week. When I was 8 I had no clue what the Fertile Crescent was let alone it was bordered by the Tigris and Euphrates rivers, Drew does and he can explain what a shaduf is and how it works. We learned that the Mesopotamians invented the wheel as well as the flush toilet (I thank them for both). We have learned about Cuniform and ziggurats. We have drawn pictures, colored maps, made puppets, discussed agriculture, roles of men and women. The list goes on. It has been LOADS of fun for both of us.

Today he started asking about where Dracula came from as well as Frankenstein, werewolves, why mummies were supposed to be scary. He already has Halloween on his mind. So it hit me. I home school! I can teach what I want! If it excites Drew then let's learn about it. We are going to take about 2 weeks close to Halloween and do a unit study on the myths and legends of Halloween.

We have the big trip in December that he doesn't know about. So, why not do a unit study on the life of Walt Disney and his vision? I actually have unit studies planned for the next 5 months. Maybe this will be one way to keep school going year round. In the summer we just do a couple unit studies.

We still do math and spelling most days but we have so much fun with these studies it is hard to get the other stuff in like we need to.

I found this video the other day and it sums up homeschooling so well. I was terrified at the beginning but my home school friends have helped so much. I have learned that every day there are opportunities to learn that don't involve a classroom. We embrace learning in a totally different hands on way. We now go camping, play dates, park days, museums, field trips to all sorts of places. We are going to Monterey Aquarium in November, Fort Ross in April. Drew will be taking Spanish, nutrition this semester with our local co-op. He is also taking a year long class to get us ready for Fort Ross and when we get back he will have to make a presentation board about what he learned. He has already picked his country for our International day.

I get really irritated at our pastors wife. She is a teacher and every time she sees Drew she asks him math questions, spelling questions, English (noun verb) questions. She is continually tell me that he is behind. UMM...NO he is not behind, he is where he needs to be for him. How may second graders do you know who can point to the Tigris River on a map and explain that is now an area in conflict? The math and spelling will come - heck Phil can't spell and he is about to graduate from college.

I guess what I am trying to say (getting off my soap box) is that while home school is not for everyone. For us it has been the best thing we CHOSE to do.

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.

after much discussion

As you know we put Drew on Ritalin this past week for ADHD. The side effects have been horrenduous. I WANT MY LITTLE BOY BACK!!!!!

Last night was the worst. He was having massive anxeity attacks and there was no calming him down. My heart was breaking. His doctor was out of town and the on call doc was no help. I had been thinking for a couple weeks that Drew's personality had been changing and I was questioning the "wisdom" of all the doctors. After yesterday and Scott and I talking long into the night we have decided there has to be a better well to help Andrew. I am calling both his peditriican and his Neurologist tomorrow and telling them we are weaning him off all meds. In a couple months AFTER all meds are out of his system we will re assess what we feel is the right course of treatment - if any for Drew. We think the Ritalin was the culprit for the anxeity attacks but we think it was in conjunction with other meds.

We are taking control of this and not the docs. Some of the drugs have not been tested on kids - they are what is called off label. So we have no idea what they are doing to him. I am wondering if the twitching is a side effect of one or a combo of the drugs.

I know we may be in for a rough couple weeks but for Drew we have to do what we were meant to do as his parents. We have to do what we feel is best and right now it is to get him off all the poisons and let his body figure out what it needs.