Honesty

In times when I am around friends or family or especially strangers, It's a constant feeling of being judged on what he(our son) is doing. Will they think I taught him to act this way? Will they think we are bad parents? Will they think bad of him? Will they think bad of us?
This weekend he was invited to a B-day party, for days I tried to come up with any excuse in my head that he couldn't go. There were going to be 20 kids in a loud bowling alley. When Taylor get in a loud environment with a lot of kids, he starts to act out or even a little weird. I knew he wanted to go, so I shut my self up and took him. Low and behold, he was absolutely great! You never know. Very antisocial, but behavior wise he was great.
Now today a close friend stopped by and as soon as they get to our house he starts acting up. Making noises, flopping himself on the floor and being loud. This is when I get embarrassed. He won't stop if you ask him to, its like he has no idea how to act when he is nervous or in an awkward moment. These are reasons(not good ones) that I do tend to become antisocial myself when he is involved. I know he can't help it but still I sit there and keep asking him to calm down, tell you don't need to act like that. I hate that I am embarrassed by it.
We had also received some papers to fill out over the weekend, a secondary insurance that could help us pay for the tests and treatments the doctors want us to do. As I started to fill them out I stopped myself halfway through and thought to myself " If I fill these out and send them in and he is accepted we will have to go through with the testing. And if we do and they do say he has aspergers with the tourettes, where does that put him in life?" "Now he has a label(Which is related to autism)will he be denied anything in life because of it?" "Will insurance quite covering him for a preexisting condition?" All of these.
Then tonight I started reading my current book ASPERGER SYNDROME & YOUR CHILD and read this passage.......

"Asperger Syndrome shouldn't be though of as a frightening label-facing it honestly is the first step in getting wonderful support and help, and learning to help your child."

You can guess it, I finished filling out the paperwork. Hopefully we do the right thing.

Happy News

A little happy news today, we had a call from the neurologist's office last night, she called to tell us that we may be able to qualify for BCMH which is like a secondary insurance that would be just for Taylor. If we qualify they will help with copays and the testing! We have tried to qualify for medicaid and made just a tad too much, but she said that this is more flexible on your income and a lot of people who do not qualify for medicaid can for this. I will be waiting for the mail tomorrow!

How could he not know?

Last night was a very exciting night, Our little boy had his first pinewood derby car race with his Boy Scout group. He was very excited, the room was loud and the kids were cheering! I managed to video tape one of the races that he won! He was so excited and ran over to see if I got it on camera, so I replayed it for him. Halfway through, right before the race starts he notices himself jumping out of his seat and asks "mommy why was I jumping?" My thought was "well you tell me". But Instead all I could say was "You were just excited". How could he not know he was jumping? And he was a truly embarrassed that he had once he saw the tape. If we were at home I probably would have told him to sit down and stop jumping, I thought he was just excited and knew he was doing it. Really couldn't believe he had no idea.

He is the one in the far right chair next to the little girl in pink.

Brushing Teeth

Every day getting him to brush his teeth in a timely fashion is like pulling teeth. He will spend 10 minutes fooling around before starting. Last night running late to bed, I tell him to get his teeth brushed 5 minutes go by, 10 minutes go by, I ask "Taylor have you started?" His reply "I'm counting bristles!" My thought "Are you serious?" Half the time we end up doing it for him.

I guess I should of asked "So how many are there?"!

As I promised

Last time I promised I would come back with some helpful tips for children with Asperger's. Here it is! Children with Asperger's have a very difficult time socializing with others, here is a helpful site that can help you make what they call social stories for you to practice at home with your child to help them understand or to make a habit on the way they react with others
http://www.thegraycenter.org/social-stories
They also have an activity called ATTRIBUTES ACTIVITY. (Normally done with a clinician)This is for you and your child to do together or as a family. Get large sheets of paper or a large dry erase board, With a parent starting first,(the child with Aspergers goes last) that person is to divide each sheet into two columns: "Qualities" and "Difficulties". These can be practical abilities, knowledge, personality, and expression, feelings. Make sure you keep it a positive activity! Ensuring there are more good than bad. The clinician will do this activity to show the patterns and helps with a diagnosis. But is to reassure the child that there is nothing wrong with Aspergers it is just a different way of thinking, and some of the child's talents and good qualities come from having Aspergers. Even Einstein, Thomas Jefferson and Mozart were said to show signs of Aspergers!

We are going to give these a try! Never hurts.

Ranting!

There are some days when I look at him (and to look at him he looks like any normal child) And I have to try to remind myself that he is not a normal child. Yesterday was one of those days. You name it and he cried about it. A friend that wasn't so nice to him, he did not get a perfect score on his writing paper, he couldn't sand his derby car well, he had to take a shower , brush his teeth, just anything. I thought I was going to lose it. And to top it off for him he was having tics in the evening again.I just hate to see the tic that makes him clack his knees together, it just sounds like it hurts and sometimes bruises. (Thank goodness he had no homework). Just still having a hard time thinking that he is not doing these things on purpose. And sometimes(take that back)a lot of the time his tone of voice sounds like he is always giving me or anyone attitude, which gets close to putting me over my limit! (That part I hear could be the Aspergers not the tourettes) But good gosh what more can God give me. I use to think I was a very patient person. But I still Love him. Sometimes you just have to keep saying that.

Their Back

Today he came home from school and told me that the tics were happening at school again. It was a very rough week for him because his teacher(his grandma) was off on Monday so they had a sub. They started learning something new in phonics that all the kids were having a hard time with but got a lot of low grades on papers. Kind of started the week off bad. So I think he was just stressed and very anxious.
I am 131 pages in to the book now and am finding a lot of useful info. Really there is so much that it is hard to put it all on this blog. Anyone who has children like this, need to read it. I will put some helpful tips on children with aspergers next time!

Asperger's

A couple months ago, my son came home from school very upset said he had a terrible day, no one played with him at recess and that he had no friends, this has been going on since he started school at the age of 3. He is now 8. Frustrated that day I decided to type into my google bar Children with problems in socializing. And after reading through a lot I found this site http://www.yourlittleprofessor.com/diagnosing.html . ASPERGERS. Explained my son to the T.
*He is always playing alone,
*complaining all the other kids hate him,
*inappropriate emotional outbursts,
*lack of social reciprocation,
*unusual attachment to routine and need for sameness,
*lack of eye contact,
*not seeming to know what to say or do in social situations,
*clumsiness and coordination problems,
*obsessive interests(he is obsessed with the solar system, volcanoes, muscle cars), use to be
Thomas the train, he could tell you their color/names/sound how many wheels they had,
anything!

(Just a few of his Solar system books)

*overly formal speaking and language

And one or two more listed.

And of course my family members thought I was just being overprotective(what parent isn't) and over dramatic. I was wondering how could he have tourettes and aspergers? But the author of this book explains that a lot of these syndromes come together. And some symptoms over cross each other.

But what I really wanted to share with you was this website with a clip of a conversation with a boy who is 8 yrs old with Aspergers. http://www.pediatricneurology.com/aspergers_sound.htm
Please click on the 8yr old. I have conversations like these with our son everyday! I thought he was just being rude or giving me attitude all the time. I GUESS I WAS WRONG:(

He has not been diagnosed by a doctor for Aspergers. That is one of the developmental tests they wanted us to do but can not afford yet.

Red Flags

There are times(Many times) where I have found myself thinking or saying to myself... boy he is so lazy, he is always so disorganized, never shows any interest in anything, he did it two days ago why not today! His way of doing homework is so unorganized and time consuming that it leaves us all frustrated, is he trying to make me angry? I told him I would punish him, why is he still not doing it?

Coming from this book Kids in the Syndrome Mix....by martin L. Kutsher MD, all could be red flags of a very real problem. Why would the child want to fail, get punished,or feel bad at any subject or thing.

This is quit a relief to hear because there are many days when I think all he is doing is trying to make me angry or defy the rules(Not to say that never happens). But the way that most of us deal with this before knowing there is a problem can be emotional torture to these children. Making them feel inadequate less than others. Because you treat them as if they know what they are doing and why. I am to blame and have expected and asked him to be more like kids his own age. Boy... that had to make him feel so terrible. I should have realized along time ago that something was not normal. For goodness sakes he never acted like a normal child his age!
But then again who wants to think something is wrong and label them with a disability?

As I read chapter 3 about ADHD, I realize there is so much more to it than a child that can't sit still or simply concentrate on a task. Just their complete way of thinking, rationalizing, organizing, sense of time, moving from one thing to the next, the way they remember, and how emotions play a part is just so complex and it is no wonder they get so frustrated. And there is more to it than that. You would think that with as complex as it is that it should not be soooo over diagnosed.
For those that do have a mix with ADHD it is a whole change in routine for them to cope at school with a whole lot of help from the teacher. Communication is the key. Try to always be one step ahead.This book gives you step by step ways to help them organize school work and complete difficult tasks or projects with many steps.

This will absolutely help us in the way we sit and do homework every night. No more or at least very few emotional breakdowns at homework time for us FROM NOW ON!

WOW!

Last night after reading 100 pages of another book this week that was way over my head, the one that I had on hold from the library finally came in.

Started reading and WOW! The title is KIDS IN THE SYNDROME MIX of ADHD, LD, Asperger's, Tourettes, Bipolor and more! By Martin L. Kutscher MD. Dr Kutscher is a pediatric Neurologist with more than 18 yrs experience of diagnosing neuropsychiatric disorders.

This book is put in a way that anyone can follow. And from the start you start shaking your head yes, you are not alone. Starting with the fact that most children have multiple issues, they may have Tourettes,ADHD and Aspergers or any other combination. Which makes a diagnosis very hard, because syndromes frequently mix together. Some may even imitate each other, like a very anxious distracted child may look like he has ADHD.

FIRST SIGNS

"No Child's problem is diagnosed on the basis of one piece of information. Over time, multiple observers all become increasingly aware that there is a problem. The concerns typically brew over several years, until someone finally gets sufficiently frustrated to say "Hey, there's a pattern here. Something is up!" "

Dr. Kutscher

Parents know their children the best. And being the one that spends the most time with the child, Mothers tend to have concerns first. They hear all the complaints from the teachers and bear the brunt of the child's frustrations. If a parent sees that something is wrong they are normally right.

You Absolutely need to go to your library and borrow this book!

Headaches

At four in the morning today he woke with a fever of 101.2 and a headache. You would think perfectly normal he must be coming down with something.

Well it happens way too much. He has already missed numerous days this year for the exact same thing. He always complains of the same pain right in the middle of his forehead and runs a low to mild fever. No other symptoms. Just last month he missed 2 days for this. Family doctor said sinus infection. Same 2 months before that. So 2 rounds of antibiotic. After that the ear nose throat specialist said he looked great. He does commonly complain of his heart hurting, but I figure it is just because he is always so anxious. His heart always sounds fine. No he does not have asthma! After last night it has his dad and I wondering if it really is sinus' or an underlying thing that everyone is missing. Headaches do run in the family but not with fevers!

He has had these symptoms since preschool and in march of last year had his adenoids taken out. At that point he had no more for at least 6 months. But now THEIR BACK!
ARE WE MISSING SOMETHING?

Comes And Goes

There are times when I wonder......Does he really have Tourettes? The tics seem to sometime go away. Sometimes for days or even weeks. And then all of a sudden their back in full force.

I have noticed that ANXIETY plays a big part in when they show up. Sometimes when he is really tired or angry/frustrated the are more intense.

Keeping him on a good routine and catching things before they fully frustrate him have helped tremendously. You have to really observe your child and know what triggers them. At home we have managed to almost completely make them go away. School however is a different story. He has a lot of boys(rowdy boys at that) in his class and keeping things calm is almost impossible. We have noticed certain subjects in school that get him going and end up leading to a full fledged emotional breakdown. At that point you just call it a night. Because by that time his brain is done!

The miracle of it all is that there is something with music that he loves so much and when he listens to it or even at his piano lessons the tics never appear.

AND HERE IT IS!

The start of the ever dreading research:( I just hope I can find some life changing information! You will notice in the picture most of these books are on Aspergers(All the Tourettes were checked out) but the other half of our difficulties.

WISH ME LUCK! It is almost St. Patty's day.

Let the research begin!

As you can see, the research has begun!With a day at the public Library! You can find anything there.

Until the next appointment, I did my homework researched TONS and typed an entire list of problems he was having, recorded the problems and made discs for him to see.
No matter how much research you do and no matter how prepared you come, nothing can prepare you for what the doctor has to say.

He was %100 sure our son had tourettes. He has the characteristic ADHD, OCD, anger/emotional problems, motor and vocal tics. The only difference is that we had only paid attention to these signs for the last 7 months. So for now untill our June appt. He has been on paper diagnosed with transient tics.
The doctor whom I would strongly recommend, said that he did not want to medicate him unless he was causing harm to himself or others. But has recommended behavior therapy.
So in February(on his birthday) We took him the the first behavoir therapy only to leave very frustrated. This first appt. they did nothing but talk to us about everything I had already filled out papers on(A WASTE OF TIME). And they recommended to have developmental test done, because they think he may also have Aspergers.
After doing a lot of research this week, I have found that our insurance will not pay for any of this untill we hit our $3,000 deductible! The test alone we were told could cost anywhere from $300-$1,000. And the therapy would be $250 a week for 6-8 weeks!
WHO CAN AFFORD THAT!
So Now I am doing reasearch on Cognitive Behavior Therapy to see if any of it can benifit our sons with Tourettes and for all other families that don't want to medicate their child or can not afford the therapy.
There will be no book untouched when I'm Through and I hope it will help our child and hopefully someone else's!

Now today he is 8yrs old and in the second grade.(in his grandmas class!).
We first noticed that something more was going on when his grandpa(who lives on the farm) came to us with some concerns. He noticed that Taylor(our son) was occasionally jerking is neck. When you would ask him to stop it would get worse. I thought it was just because he hated the way tags felt. We kept telling his grandpa he was fine and to ignore it.
One night shortly after that our family was watching a movie. I looked over and noticed that he was non stop blinking one after another. It went on the entire movie. From that day we noticed more and more involuntary movements. Leg spasms, some vocal noises, a motion where his body will move in the shape of an S and more. Now we were really concerned.
I called the family doctor that day make an appointment to have him checked. The appointment was for two weeks later. In between that time the movements got worse. So with not much thinking we decided to take him to the children's emergencyroom to hurry the referral to a neurologist. Of course like we knew they could not do much there. But check his reflexes and they did a cat scan to make sure there was nothing in the brain causing these movements.
Thank goodness found nothing unusual. But they also scheduled 2 more tests for later that month, an EEG and an MRI.
CAME BACK NORMAL! In a way a relief but no explanation on why this was happening. So now we are back feeling hopeless and lost as to how to help our son. They did refer us to the neurology there at the hospital, but another wait for 3 months!
Below is a video of the tics the day before we took him to the emergency room, They were like this all evening. You will notice his neck tic and one that involves the whole body moving to the side and the leg tics.(which you can see he gets frustrated with and tries to hold them down)

Our Journey with Tourettes

Since preschool our son has always had problems in class. He started preschool when he was three. Our family lives on a family farm and we thought it would be good to start him early to socialize with other children. Which has always been hard for him. He has so much energy and is always loud, which tends to push other kids away. He also acted much older than his age.( We figured it was because his best friend was his Grandpa)And just maybe he wasn't use to interacting with kids. But in every childs class they have daily check marks for behavior, I could probably count with my fingers how many times he came home with all of them or even half checked for great. He never played with others at reccess, just did his own thing. Same for his 2nd year.
In Kindergarten the same thing happened. We put him in a private school that has all day kindergarten hoping the routine would help.NOPE! had the same problems. Always being loud, making noises, jumpin in and out of his chair and just disrupting the whole class. At this point he still has no real Best Friend. Still playing alone.
In first grade we decided to send him to our public county school where his Grandma is a teacher. (Mostly because we couldn't afford the private one). That this might help. NOPE!
Every day the teacher would send notes or schoolwork that had not been finished in class. She said he was just all over the place and very disruptive.(Heard this before). Told us that he would no longer be able to take the work home and have to take the incomplete. Still at this point no real friends. How could he, he sat in the hall everyday!