A concept so simple a CHILD came up with it?

I was browsing the internet, and came across this experiment that a child conceptualized and designed for a science fair.

I think the results he found say it all.  The mice given the food dye were so distracted and impulsive that even though they had previously mastered the maze, they both increased their time by up to 10 times their “mastered” times!  The control mice kept within the same time range.  When the dye was removed, the mice both went back to their original times, proving they had learned and retained the knowledge, but were just too distracted and impulsive with the dyes in their system to complete the maze quickly.

When my son was diagnosed with “off the charts” ADHD, the nurse practitioner suggested I remove food dyes from his diet.  You can read more about what we did, and how it worked here: https://wadingthroughalphabetsoup.wordpress.com/2011/06/19/food-dyes/

It is so hard to tell M that he can’t have the same food his friends are eating!  About once a week he complains about being different, and how it’s not fair.  It’s not fair that he can’t eat what his friends are eating, and it’s not fair he needs vitamins, minerals, supplements, and medication to allow him to sleep, concentrate and focus.

However, he and I both see the difference.  He remembers how he felt when he “accidentally” got food dyes.  He knows there is benefit in keeping these things out of his diet.  Especially over the past few months, when temptation has been high.  Orange things for Halloween, red and green for Christmas, red and pink for Valentine’s day.  He has made the best decisions for him, and I can tell he’s proud of himself, because he knows not only will the dyes cause him to be more impulsive, but they will also make him feel sick to his stomach.

M’s TS fundraiser

While at camp, I explained to M that we were only able to attend camp because of the fundraising efforts of several members of our local TSA chapter that hosts the camp.  So, of course, being the large-thinking entrepreneur he is, he starts planning fundraisers for himself.  At first, he wanted to have a sno-cone stand.  Then, when discussing it, we decided that it wouldn’t be a good idea because of his reactions to food dyes.  So, we decided that we would compromise.  He would use the sno-cone maker, and put lemonade concentrate over it, thus making frozen lemonade.

This fundraiser was a great lesson to M in economics, goal setting, serving others, and most of all, people skills.  Actually, one of my neighbors noticed me reminding him to look at the person in the face, and asked if he has Aspergers.   It turns out, her daughter has it, but since she was speaking in hushed tones, it seems it was not public knowledge.  I was also able to meet a grandparent whose grandson was diagnosed with TS not too long ago.

He had a total of 2 of these fundraisers.  Since they coincided with a neighbor’s yard sale, he got a lot of traffic.  He earned $70 so far.  It is kept in a safe place, waiting for more fundraisers.  M wants to have a fundraiser at SoupPlantation (his fave restaurant).  We’ll see what happens!

He said his goal was to raise enough money to bring him, myself, as well as another mom and child, to camp next summer.  When he asked how much that would be, I told him “About $500.”  Then he said he wants to earn $1,000.  It looks like I’m going to have to do some research into fundraising ideas.

It’s been one year…

It has been one year since M’s diagnosis of Tourette Syndrome was confirmed by a neurologist.  In some ways, I can’t believe that it has only been one year.  In other ways, it seems like it was just yesterday that I couldn’t figure him out.  I distinctly remember one conversation I had with PapaBets a while ago, when we only knew about his severe ADHD (off the charts, according to the specialist).  I was so frustrated, trying to find answers and hitting block walls.  PB asked what my goal was in all of the labeling, diagnosing, and block wall hitting.  I remember telling him that my ONLY goal was to understand M better, and be able to help others understand him.  Fast forward 3 years, one year after his diagnosis, I can finally say I have met that goal.  I feel more confident as M’s parent, and definitely empowered as his teacher and encourager.

I could not have done it without the support I have received from my “TS people.”  I am so thankful for all of the people God has brought into my life in the past year, all who have taught me something – about this syndrome, about M., about myself.  You are all spread around the country, many I’ve never met, but you have encouraged me and taught me so very much!  I know where I would be without you, where I was when this whole journey began, and it wouldn’t be pretty.  Thank you!

It is pretty amazing, the changes that have occurred over the past year.  My confidence as a parent has soared.  My acceptance of not only raising, but homeschooling, a child with special needs, has brought great things!  God has brought many into my path, not only to encourage me, but for me to encourage, and I am honored to be able to pay it forward.  My goal for the past year was to build confidence and acceptance in M and myself.  My goal for this year is to start teaching M how to take responsibility for his behavior – whether or not the cause is a neurological disorder that causes movements and vocalizations he can’t control.

I can’t wait to see what this next year holds, and watch God’s plan unfold in my family.  While I have developed the confidence it will take to raise a child with the needs and deficits he has, we are still far from conquering it.  TS tends to get progressively worse with time, typically peaking in puberty, and then decreasing again, though never going away completely.  And, since M has many co-morbid diagnoses, such as the Asperger’s, ADHD, OCD, etc. chances are that we will have more struggles than others.  For now, we have found the right combination of diet, vitamins, and medication.  But, the doses of medication and supplements tend to need increasing over time.  There will be a time when they are no longer working as well as they have worked this year.  But, Lord willing, I will have plenty of time before that happens.

TS Camp 2011

M and I had the opportunity to attend Tourette Syndrome camp last month.  For M, it was the chance to be around other kids who are similar to him in many ways.  For me, it was the chance to be around other parents with some of the same struggles I have.

I think my favorite part about the camp was seeing these kids able to be themselves.  I had heard from many of their parents about how much they struggle in school, and when they’re around their siblings, and extended family members.  But, here at camp, none of that mattered.  Almost all of the other kids at camp had TS (there were a few siblings), so they didn’t have to worry about what anyone else would think.  They were all able to let their personalities shine through.

There were also special sessions for parents.  The camp organizers brought in guest speakers from the medical and educational community to talk with us about different ways we might be able to help our kids.  I loved this!  Not only were we all able to attend camp with our children, but we also were able to be supported as parents.  It was great!

My heart may have broken a little bit just then…

Last week, M, G, C and I went to the local fair.  I began setting the ground rules the day before we went:  We were going to see some vendors, eat dinner, and each child would get one ride and one game.  We get to the fair, we do what we went to do, and we were leaving.  We were only there a few hours, but it was a long day for the four of us!  They did great, though.  I was so proud of my three!  As we are leaving, M is having one of his newer tics where he pours water into his mouth and lets it dribble out.  I pay it no attention, since I know that trying to get him to stop will cause his brain to have to do it multiple times to complete the tic.  Then, we walk by a woman.  She and her family are headed in, as we are headed out.  I will never forget what she said.  Loudly enough that I could hear, yet not directed at me.  She said, and I quote, “Nasty a** kid.”

My heart broke a little just then.  Ok, my heart broke a lot.  Since many of M’s tics are socially inappropriate, I have known the day was coming when we would encounter negative opinions regarding his “behavior” in public.  I have been very thankful that not only does he act slightly immature, but he also looks immature for his age, so he has been able to get away with it.  Not anymore, it seems.

I have been encouraging M not to hold his tics in when we’re in public, as long as it is appropriate (i.e. no spitting inside, no harming others, etc).  He’s really good at holding them in.  But, then once we get home his tics go crazy, he becomes extremely impulsive, and has a very short fuse.  So, really, he shouldn’t be holding them in.  I have also been talking with M about standing up for himself, and not being afraid to tell people that he has Tourette Syndrome.  I have told him that many people don’t know what that means, so he should explain it.  I have cards we can use, also, that explain it, and state that TS is a condition covered by the Americans with Disabilities act.  But, he’s still so private and unsure.  He gets SO mad when I talk about him to anyone.  I wanted so badly to go and put that woman in her place.  Then I realized that the kids didn’t hear it, and she looked like the type of person education would not have had an impact on, so I decided to just move on.

I think the biggest reason my heart broke a little just then was because that one event is the first of many, many, many more to come.  A child should not have to defend themselves, or explain what they do and why they do it.  My son is not misbehaving.  He has a neurological disorder that causes him to have movements and vocalizations he can’t control.  It causes him to have to act before thinking about what he does.  It also causes him to have rages – episodes when he gets so angry he can’t calm down and think rationally.  Along with the TS, he also has many other related conditions, like Asperger’s, ADHD, OCD, and more.  These disabilities are often referred to as “hidden” disabilities, because a child with these disabilities appears to be just like typical children.  Therefore, they are expected to act just like typical children.  When they simply cannot.

Food Dyes

One of the first things recommended to me by the Nurse Practitioner who diagnosed M with “off the charts” ADHD was to remove food dyes from his diet.  I had never heard of this.  I did some research, and found out that there was a study in Great Britain that tested typically developing children in two age groups with a punch that had added preservatives and food dyes.  This was a randomized, double blind, placebo controlled, crossover trial study.  That basically means that they used a punch with food dyes and preservatives, as well as a placebo – one without dyes or preservatives.  The researchers didn’t know which drink the children were getting.  They rated the children’s behavior on an ADHD rating scale, both before and after the punch was given.  This study found elevated ADHD scales in many of the younger children (3 year old), and all of the older children (8/9 year old) given the preservative and food dye laden drink, but not in those given the placebo.

So, I decided to try this with my son.I didn’t think it would make a difference, but I figured it couldn’t hurt.  So, I committed to one month of him not having any foods with the two food dyes that are most known for causing hyperactivity reactions in children.  These were Red #40 and Yellow #5.  I didn’t notice a difference right away.  It took at least a week before I noticed any behavior changes.  But, then I noticed that he was slightly less impulsive, and less hyperactive.  After two weeks, he got to what I would consider his “baseline” – typical behavior for M without these food dyes in his system.  This was in the summer before he turned 5.

I wasn’t sure if I was imagining things, though, so on Halloween, I decided to let him have at it with the treats at our Mom’s Club party.  I thought, what could it hurt for him to have these foods just every once in a while?  Why can’t he be a typical kid, just once every few months?  And, what if I am just making it all up?  What if I want so much for this to be a solution to his behavior that I’m seeing things that aren’t there?  So, I let him have whatever he wanted to eat.  He had orange punch, orange and black cookies, candies, pretty much everything there was colored.  He had a field day with the treats!  But, he was so out of control afterwards, he had a meltdown at the place where we had our Mom’s Club party, before we could even leave.  And, once we got home, he took a rock and scratched it down the entire side of Papa Bet’s car.  That was out of his character!  He immediately got a look on his face like he knew what he was doing was wrong, but he just couldn’t help it.

I had my answer.  I knew that I wasn’t just making it all up.  Don’t get me wrong, it didn’t cure his ADHD.  It just brought him from a level of Tasmanian Devil down to Road Runner.  Still hyper, still busy, still definitely ADHD.  But more in control, and less impulsive.  So, I continued to monitor his food, and watch what he ate.  At times, I would notice an unusual increase in his impulsive behavior.  He would become like Taz again for a while.  I would read labels, and usually found something that surprisingly had food dyes in it.  Like macaroni and cheese.  Or barbecue sauce.  Or pickles.  Pickles got me for a long time.  For a while, I had noticed M’s impulsivity would increase after eating fast food.  I couldn’t figure out why.  Then, one day, I was reading the pickle jar label.  EVERY single brand of dill pickles I read had yellow #5 in it!

Yesterday, we were at the kids’ cousins’ house.  They had cake.  I decided I didn’t want to bother with figuring out if the cake had color in it, or not.  For once, I wanted to let him be a kid and not be singled out.  Plus, he is on medication now, and I figured it was time to test whether maybe we could stop being as vigilant.  As I was eating the cake, I noticed that it probably had food color in it.  He had been SO good the whole time he was there, at the party.  He was having a good time.  So, I knew that he would get impulsive, but I thought it was something we could handle.  The first clue was that he couldn’t eat all of it.  After 3 years of not eating food dyes, it now makes him sick to his stomach.  It took about 20 minutes for it to affect his behavior.  I decided to go looking for him.  I found him in the front yard, straddling the wall, probably 4 or 5 feet high.  He felt so out of control that he was able to get “centered” by climbing the wall.  For the most part, he was able to control his impulses, but he was flitting from one thing to the next, and constantly in motion, to the point where I couldn’t keep up with him.  This lasted all evening, until I gave him his melatonin to get him to fall asleep.  Even then, it was a 2 melatonin kind of night.  He is fine today, surprisingly.  He is a little more impulsive than normal, but doing really well considering.  It should be completely out of his system by tomorrow.

I do have to end in a disclaimer.  Though eliminating food dyes did buy us some time, Papa Bets and I decided last winter that it wasn’t helping enough anymore.  I asked about adding melatonin to help him sleep.  That helped some, still not enough.  So, we decided to try a mild medication in the anti-hypertensive family.  The one he is currently on is Tenex.  It helps to take the edge off most of his tics, and mellows out his hyperactivity a little more.  We will also likely add in a stimulant this summer or fall, as well, to help with his attention and focus.  His neurologist hopes that by doing a little bit of a few things that are researched and tested to help in kids with his type of Alphabet Soup, we will be able to keep the doses low, and get a good result.  I’ll keep you posted!

There are two things M will NEVER be able to do…

Tell lies, and play hide and go seek without being found.  That’s just the way it is.  When he’s stressed out, or excited he squeals and can’t hold still.  His tics work better than any lie detector test he could be given.  They give him away.

Let me explain…

The other night, the kids and I were at my mom’s house.  My mom and I are in the house, talking, when we see M run into the garage, duck down and hide.  As he was doing this, a car drove away.  M said, “Yes! I did it!”  I called him into the house.  I noticed that he was ticcing.  A lot.  I asked, “M, what did you do?”   To which he answered “I ate food color, that’s what I did.”  I told him, if you ate food color, you know you won’t get in trouble, but it will probably make you do a bunch of stuff that will get you in trouble, right?”  Yeah, he goes on to say.  Still ticcing.

Now, mind you, his current almost 24/7 tic is one where he bobs his head, to the side and a little forward.  Kind of like the guys in this skit: http://www.youtube.com/watch?v=P8tB16JrTiQ&playnext=1&list=PL7A9EC0C516A5B263  No, really.  It is actually a bit comical, especially when he’s anxious about something – you will see why.

So, he is giving me that answer, still ticcing.  Badly.  So, I know the truth hasn’t come out yet.  I ask him again, and again to no avail.  Then, I made some suggestions, and he denied that any of them happened.  Then, as he’s walking away, he said,”I know!”  He turned around and told me that he ding-dong ditched a neighbor’s house.  Still ticcing.  Badly.  Ticcing worse than I’ve ever seen him tic before.  With vocalizations.  Grunts and squeaks.  And the head.  Bobbing.  So, again, I know he’s lied to me.  I threaten him with punishments.  Harsh ones, like taking away his air1 from him, computer time from him, etc.  He gladly accepted the punishments, even when I said if the truth didn’t come out I would have to spank him.  Mind you, still ticcing. Like those guys on Saturday Night Live.

At this point I am mad, and frustrated.  But, I tried my best not to let it show.  FINALLY, the truth came out.  It turns out, while he was walking on the sidewalk, he saw an empty juice bottle.  He then saw a neighbor get in the car.  He decided to put the bottle in the middle of the street to see if the car would run over it.  When I found out what he did, I had to chuckle (in a way that he couldn’t see, of course).  I was upset that he had lied to me, but kind of felt a teeny, tiny bit proud.  Because, he finally decided to confess the truth.  And, because what he did was something probably every single little boy (and teenager) has done, or thought about doing.  I let him think about what his punishment should be.  He decided that he should be grounded off Air1.com for 7 days.  I thought that was a bit harsh, so he was grounded for 3 days.

Do you know what?  The second the confession came out, the tics just about stopped, and he was back to head bobbing every few seconds.

DJ M.

I promised a post on M’s interest in his “radio station” in a previous post.  M has loved music since the day he was born.   He has always tapped rhythmically, hummed and/or clicked to a beat.  When we moved to where we live now, we found that we received a radio station with good Christian music (our music of choice), Air1.  M has decided that he loves this station.  He listens to it almost all day long.  He types in their web address on the computer, or listens to it when his radio is receiving good signals.  His favorite DJ is Ashton.

Lately, he has decided, along with building his own church and running it, that he wants to also build a radio station broadcasting from that church.  He calls it KMBM FM.  For a while, he had this great setup in his playhut tent.  He had a small chair, his radio broadcasting, a microphone, headphones.  He has since moved his tent to another location and has yet to set it up again.  He made signs advertising the radio station.  He would listen to the radio and in between each song, give his call letters and talk a little to his audience.  He loved it so much that that was the first thing he did when he woke up, and the last thing he did before he went to bed.  One time, I came home from a mom’s homeschool function to find him sound asleep in the tent, with his headphones on and his microphone on his chest.  He has made signs for his station, one labeled “sound booth, SHHHH!”  Another for the door to his room with his station call letters, and our home phone number on it (he recently learned our phone number, and is SO proud to share it with me and practice it).  He was so obsessed with his radio station that I had to make rules.  The station could not be turned on until he woke up in the morning (after the sun rose), and it had to be turned off when the sun set.

This is an example of the hyperfocus some children with TS can have.  Children with TS can have social issues very similar to those with Asperger’s Syndrome.  They sometimes will be diagnosed with Asperger’s before they are diagnosed with TS.  My son seems to be more hyperfocused than many kids with TS I’ve met.  M has always had a hyperfocus of one sort or another.  His first one, when he was just 2 or so, was vacuums.  How they worked, the differences in tubes that attached to them, how the dust was sucked into them.  Then it progressed to anything with a cord, or even just the cord itself, then fans.  More recently, he has been focused on car’s engines, more specifically, the tailpipes.

Parenting through this hyperfocus is difficult.  On the one hand, I want him to fit in.  I don’t want people looking at him funny when he’s talking ad nauseum about Air1, and his radio station that he is creating.  But, on the other hand, he really enjoys this.  It is who he is, and what he enjoys.  I struggle with dual desires – my first that he is happy and doing what he enjoys, and the other that he fits in without sticking out, being made fun of, receiving funny looks.  He is learning so much from being able to immerse himself in his station.  He’s learned about radio waves, radio signals, what materials receive radio waves the best, and whether the size and shape of the receiving objects make a difference.  He’s practicing his spelling and reading.  So, in allowing him to immerse himself in radio stations, he’s covered science, math, language arts, even a little history.

I try to remind myself that many of the greatest, most brilliant, most creative people have had what we now call “disorders.”  I think there is a fine line between desiring M to fulfill his potential as successfully as possible and changing who he is.  I pray that God will give me wisdom as I continue on this journey with my unique, bright, son.

What a blessing!

My son has been waking up when PapaBets is just leaving for work.  I think this might be because of the medication, or the time change, or maybe both.  And not just a little early – he’s been waking up at 6:30-ish.  That is at least 3 hours earlier than he usually wakes up!  But, in those hours before anyone in the house is up and at em, he has been productive!  One morning he made a sign for his “radio station” on my computer (more about that in a future blog).  He printed it out, and taped it up all on his own.  But, this morning I was in for a surprise!

I woke up to M telling me that he was wide awake and couldn’t sleep anymore.  I said fine.  Then went back to dozing.  I am NOT a morning person, and it takes me a while to finally get up.  Just a few minutes later, I heard dishes clattering.  I decided that as long as there was peace, and he wasn’t bothering anyone, I’d let it be.  So, a few minutes later he comes in and tells me he is planning a surprise and I wasn’t allowed out of my room.  Fine.  Then, a few minutes later, he comes in and tells me, “Mom, I’ve planned a big surprise for you.  I loaded the dishwasher, and ran it.  I put in just the right amount of soap and everything.”

He did a fantastic job!  It was loaded perfectly.  He was SO proud of himself.  He got his reward, two smiley faces on his $1 chart (he needs 10 to earn $1).  I am so proud of my little blessing!  This week has been one of the roughest for him, impulse wise.  He needed to have an accomplishment like this.  And now, because he was up early, he’s napping.  Sweet boy.

He’s actually reading!

I have held off on this post for a while now, because I don’t want to sound like an advertisement.  I bought an online phonics program for M a while ago.  He’s been asking to use it every day, even on the weekends!  He does his lesson, which presents the sounds several ways and in words.  At the end, there is a progress report that comes up.  He prints that out, and reads three sentences that he’s practiced during the lesson, then puts it in his “reading portfolio” to show his progress.  He LOVES it!  And he’s actually fluently reading the words on the page.  I can’t wait until he gets beyond simple phonics, and moves on to blends and harder words.  That will be the true test.

The lessons are animated, but not over the top to get the child’s attention.  He started on lesson 10, and is on lesson 21 now.  The best part is, if he burns out on this like he has on other programs, they have a 60 day money back guarantee!  Also, you are allowed one student account at a time for no additional charge, but once that child has completed the program, the account is yours to keep.  You can delete that child, and start the next child at the beginning.  Since this is approximately a 2 year program (M will be done in a matter of months if he keeps up this rate), G and then C will both be ready to start as soon as the other is finished.  Then, when they are done, I can transfer the membership to another family, at no cost to them.

M is the type of child who likes to teach himself.  He doesn’t like it if he doesn’t understand something, or if he needs to be taught more than once.  This program is basically doing that.  He logs himself in, and does the work on the computer on his own.  Nobody is telling him how to do it, or if he’s doing it wrong.  The program actually doesn’t tell him he’s wrong, either.  It simply presents the sound/word again until he gets it right.  The progress report shows how many he got correct on the first try, and tells you which words or sounds required multiple presentations.  If he needs more than 4 items presented more than once, he is supposed to repeat the lesson.

I hope this program continues to build on his success.  Only time will tell, but I think it will.