Wednesday, October 08, 2014

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.

Monday, May 26, 2014

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.

Monday, April 28, 2014

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




Wednesday, April 16, 2014

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.

Monday, April 14, 2014

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.