Tuesdays With Tyler: Halloween at Tyler’s House!

I say Tyler’s house, because he has been the main thrust of our Halloween decorations.  I have collected plenty of decorations over the years but if there were no Tyler, neither Grant nor I would have been motivated to put them up.  So after a few days of “When are we going to put up the Halloween decorations, when are we going to put up the Halloween decorations?” last weekend, in a God-given parent burst of energy, Grant and I unearthed my collection.  There was only one problem.  “Where are the scary decorations?”

I did own a scary skeleton from my Beanie Baby collecting days!

 

I couldn't resist picking up this skeleton nutcracker from Target. The Haunted Movie Theatre is something I painted probably about 20 years ago!

 

This past weekend we went to Michaels because the outside of our home was still “not scary enough”.  I was surprised at how reasonable the prices were plus God bless their coupons!   One aisle got Tyler scared so badly he cried, “Let’s get out of here!”

Tyler's pick from Michaels: The super scary huge bat!

 

Also at Michaels we picked up this foam Haunted Tree House craft project.  As I was buying the foam glue I had my doubts.  I am craft challenged, you see.  But I have noticed that since Tyler was born, the “Mommy Craft” part of my brain has kicked into gear.  Somehow I have even become a better artist.  Has anyone else experienced this phenomenon?

Tyler and Mommy's special Halloween project! I am so proud of us!

 

I hoped you enjoyed seeing what our home looked like for Halloween.  With a lot of help from Tyler!

 

 

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At the Endocrinologist’s: Confusion Reigns

Before you read this post you may want to read The Walking Dead in which I describe my first trip to the endocrinologist.  I am so confused I find this a very difficult post to write!

Earlier this week I had my follow-up appointment to my first visit to the endocrinologist.  I had been praying for a diagnosis of some sort because my symptoms in the last few months have become so severe; excessive weight gain, so tired to the point where I have fallen asleep while eating with my family, severely nauseous and more.

I had to wait for more than an hour and a half.  I had come early because I was trying to run an errand before that and I became so nauseous that I decided to just go to the doctor’s office because I could no longer drive. When they first called me, the nurse brought me in to an office and handed me my test results and then said to go back out to the waiting room, the doctor would be with me in a few minutes.  I looked at my lab tests and was horrified because there were many abnormal results including that I had a nodule on my thyroid.  I have never been to a doctor where they give you your lab tests with no explanation!  I sat in the waiting room trying not to cry.  I talked to the woman next to me and started laughing it up because if I didn’t make jokes I would have totally lost it!

Finally it was my turn.  Here is something you never want to hear a doctor say: I don’t understand these results, you are confusing me!

I did appreciate her honesty though.  I have had too many doctors who think they are God, who either don’t believe you at all or try to guess at what is wrong with you.

First of all, she said that yes, I had a nodule but that it was too small to be causing any of my symptoms and we were just going to put a watch on it.

My fasting blood sugar was high.  Just 106 ( a normal range should be up to 99) but because I had gestational diabetes and my symptoms of weight gain, fatigue, and nausea were so severe, she wanted me to see a dietician to start the diabetic diet.  I was in disbelief, although diabetes runs on both sides of my family and I knew I would be getting diabetes sooner or later due to the G.D…I guess no one wants to hear that news.

Diabetes is just one of those diseases that if I had my say, I would pick another.  To me, it is so invasive, life changing.  “But Halloween is coming up, and the holidays!”  “If you keep eating like you are, you are just going to get bigger and bigger.  You are going to bloat up, sweat and just keep getting sicker.”  (Yes, but why did this have to happen during the holiday season??)

My cortisol level was mind blowingly low.  A ‘5’; the scale begins at 6.2.  And here is where it confused her the most.  Low cortisol levels, although they account for my horrendous tiredness, are the opposite of the rest of my symptoms.  Symptoms of low cortisol include blood sugar yes, but LOW blood sugar not high, weight issues yes, but weight LOSS, not gain!

I started to cry.  “I don’t understand, what then is making me so sick, why am I so sick?” “Well, what bothers you the most?”  “I guess the weight gain, it is just so out of control.” “So let’s get you to the dietician first.”  She wrote up a prescription to repeat the cortisol level and some other tests.  She walked me out with her arm around me.  “Don’t worry, we’re going to fix you up.”  She is the sweetest, I must say!  I have to see her November 10th.

I already have cut out the sugars on my own and have lost a couple of pounds and feel a bit better.  So I guess she has something there, ha, ha.

It’s just…Why did this have to happen during the holidays???

No candy for you!

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What is My Current Profile Photo on Face Book?

Inspired by Mama Kat’s Writer’s Workshop.

Prompt 4)  Share the story behind your current Facebook profile photo.

Unlike most bloggers out there I do not have a Facebook for this blog.  It’s something I’ve had on my “to do” list for, oh, six months now.  (I do have a Google+, Emily Cullen, if you care to follow, and I might as well throw in @mamasick on Twitter if you happen to fall in love with this blog today.)

 

That is two of my favorite living creatures in the whole world.  My five year old son, Tyler, and my 14 and a half year old kitty, Lizzie.  I lost her sister two years ago and ever since then I take care to give Lizzie some lovin’ every day because she is getting up there in years, although she is still very healthy and active.

Tyler is asleep on my bed (how cute is his little tush sticking up?) and Lizzie is not asleep, she is just stretched out next to him, purring with happiness.  It is one of the joys in my life that Tyler and Lizzie adore each other, especially when our other cat only likes my husband, even though I have known her for ten years!

I am glad that Tyler loves cats as much as Grant and I do because it was our love of cats that brought Grant and I together, and without them Tyler wouldn’t even be here!  He loves to touch Lizzie’s wet nose and to pet her.  The two of them play a kind of “hide and seek” game and Lizzie will let Tyler chase her around the house until she tires out and hides in a place where Tyler cannot find her any more.

Lizzie is fascinated by everything Tyler.  She always wants to know what he is doing.  When he is sleeping she will often hop up on the bed or wherever he is sleeping and sniff his face and toes. I wonder if she is aware of how he is growing; does she remember him as a tiny baby and does she wonder why he keeps getting bigger?

I have known Lizzie since she was two weeks old and as much as I will mourn her death when that time comes, I fear even more about how the loss will affect Tyler.  He was only three when Rosie died and he cried on and off for several months afterwards.  He always tells people he has four cats, two up in Heaven and two living with us.  (We lost Grant’s other cat last year.)

We talk sometimes about getting Tyler a kitten of his own one day, but that won’t be until Lizzie passes.

It will be nice for Tyler to have a cat for his very own to grow up with, but there will never be another Lizzie for him.

 

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Tuesdays With Tyler: Spookley the Square Pumpkin!

When Tyler was a month old, five years ago, Grant eagerly bought our son a couple of Halloween books.  The only problem was they were for toddlers, at least.  “We can’t read these to him!” I said, laughing.  “Oh, I didn’t know, they just looked so cute.”

One of them was Spookley the Square Pumpkin and maybe I did try reading it to him, I did have a captive audience; he certainly was no critic!

Since 2006 I have been reading Spookley to Tyler every Halloween and have found the little square pumpkin to be getting more popular every year!  If you are not familiar with little Spookley, he happens to be the only square pumpkin in the pumpkin patch and all of the other pumpkins make fun of him.  He has trouble doing pumpkin things like rolling around.  In the end a fence breaks due to a huge storm and Spookley winds up saving the day because he is able to wedge his little square body into a hole in the fence and all of the round pumpkins bump up against him.

I won’t ruin the end of the book for you but the theme is that just because someone is different does not mean they are not the same inside, or can do things even better than you can sometimes.  It’s a good lesson for every child, but as the years go by, even more so for our family.

Spookley now has a movie which came out a couple of years ago.  It’s pretty good, except they change things a bit to make it longer.  They now have Spookley stuffed pumpkins to cuddle with. This year there is even a Spookley app which I downloaded for Tyler and we both love it.  It is the whole story with sound effects and touch activities throughout. It was well worth the $2.99 I paid for it.  Now we can enjoy Spookley in a whole new way!

I guess Grant can really pick ’em.

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For Alexa

This is my first time writing a Memorial Post for someone, and I can only pray that my writing and thoughts will be able to portray the wonderful woman Alexa was.  I asked for her help, too.

Yesterday I was looking at one of my friend’s Face Book pages and I saw Alexa Simmon’s Memorial Page as one of her “Likes”.  I was confused, not quite grasping what that meant, and then I saw it.   Alexa had died on October 6th, at 22 years old from complications of Ehlers-Danlos Syndrome.  I just kept looking at it in disbelief.  I had not been a close friend of Alexa’s.  We were fellow “Spoonies”, both members of the message boards of But You Don’t Look Sick.  We were friends on Face Book, giving each other support and hugs whenever we would see each other on our Face Book streams, she was always so positive and cheerful.  She knew my blog.  I had last spoken to her through Face Book in late September.  She had been in and out of the hospital a lot and I would always reply “Keeping you in my thoughts and prayers” or “Wishing you extra Spoons.”

I know a lot of people who are in and out of the hospital, but they always seem to rally, you know? They are fighters and you don’t even dream that some day they may lose their fight, especially someone as young and special as Alexa.

Her father, Scott Simmons, describes Alexa as a woman who “lived despite all Ehlers-Danlos Syndrome threw at her…She did so many wonderful and thoughtful things for so many afflicted with EDS, and other diseases around the globe…I am not sure whether I will ever fill the hole in my heart, but I will try as she would have wanted all of us to carry on…She will continue to live on in all of us for the rest of our lives.”

Many people, I would venture to say, are reading this and wondering what Ehlers-Danlos Syndrome is.  I had never heard of it until I became a part of But You Don’t Look Sick in 2004 after being diagnosed with Rheumatoid Arthritis in 2003.  EDS is a group of disorders that affect connective tissues that support the skin, bones, blood vessels and other organs. The disease can run the gamut from mildly loose joints, which I have, to life threatening complications.

EDS is a very difficult disease to explain to people, even to me.  Currently there are six major types including the hypermobility type, the dermatosparaxis type and the vascular type. Symptoms vary depending on the type and degree a person has the disease, but include frequent dislocations of joints, stretchy skin which can bruise easily and cause abnormal bruising and scarring.  And some forms of EDS, including the vascular and kyphoscoliosis type can involve serious and possibly life-threatening complications.  Blood vessels can unpredictably tear causing internal bleeding, stoke and shock.

About 1 in 5,000 individuals worldwide are affected with some type of EDS.  This is the face of one of them.

Alexa, a friend to many, a daughter, a sister, a grandchild, and a “Zebra”, a name people with EDS are known as because EDS is considered a rare disease.

I am using my blog today to mourn the loss of one of my fellow chronically ill sisters gone way too soon, but whom I know is at peace.

May God bless you and keep you, Alexa.  May you be dancing in Heaven and doing the other things you once loved again.

(The main purpose of my blog was to bring attention to a friend I have lost and to tell you more about EDS.  I am including a way to donate through the Alexa Simmons fundraiser page to the EDS Network CARES Research if you should feel so moved.  Please do not feel any pressure to donate but know that even one dollar can add up to many. Thank you.)

http://www.firstgiving.com/fundraiser/InMemoryofAlexa/scottsimmonsfundraisingpage

Learn more:

Ehlers-Danlos National Foundation

MedicineNet.com

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The Meeting With the School

On Wednesday Grant and I met with a child study team after receiving a call on Friday that Tyler was being disruptive in school, had speech delays, and fine and motor skill delays.

I first lamented the fact that I have grown too heavy to where nothing anywhere near appropriate would fit me for the meeting except for capri pants.  Except it was 63 degrees and raining.  With my swollen feet, all I have still been wearing is flip-flops.  I debated going to the store that day but decided it would be too hard on me physically to have to rush to buy proper attire.  A fancy blue t-shirt, capris, and sparkly blue “dress” flip-flops.  Lip gloss and earrings.  This was as good as it was going to get.

Grant and I had a lot to say and we knew we had to do a lot of listening.  Whenever I have to do something stressful like this, I sort of go out of my body and the “actress”, the strong and confident Emily takes over.  The one who won’t cry and freak out.  After things like this are over, I come out of them thinking “Who was that woman?  What happened in there?”

It was Grant and I, and six women ranging from the Vice-Principal to Tyler’s teacher to three Support Staff teachers; teachers who assist the regular teachers with special needs children, one of which had already been assigned to Tyler.  A bit shocking, something that huge and we have never been told this?  Tyler had spoken to me about a new teacher in the class but I had just figured it was a teacher’s aide, never dreaming she was actually Tyler’s teacher!

The support instructor read her report about my son.  It began, “Tyler is an imaginative kindergartner…” and was mostly negative from there except he had higher math skills than the average kindergartner.  It said that he frequently trips in school, especially in gym class and that he bumps into the other kids.  That he cannot grip a pencil or other writing implement tight enough or press hard enough and so he writes his name at a level far below other children his age.  That when she tested him he was very fidgety.

The worst parts of the report is that throughout the day Tyler makes explosive sounds and uses his hands as if he is playing with them.  She said that she believed Tyler has a secret language known only to himself!

And then his teacher said that Tyler hates certain children but will not tell her why and that today he told another child that he was going to cut off his head.

Some of the things she said about Tyler I was ready to rebut, to explain.   A lot of it was worse than I thought.  We have daily problems with Tyler saying he hates us and he wants to kill us, I didn’t know that this was starting to happen in school.

Grant and I had taken notes.  Grant talked first about Tyler’s OCD, Anxiety and Tourette’s Syndrome and about how some of these things may be contributing factors, such as his poor handwriting and so-called poor gross motor skills.  He also told the team that Tyler has been bullied twice at two different daycares.

Then it was my turn.  I told him that he had no confidence, he knew he was not as good as me or even some other children and he was reluctant to try.  How at home he would yell at me, “I will never be as smart as you!”  How he knows when he is being tested, examined or evaluated and gets very nervous.  I told him how he plays games on my iPhone, uses an adult scissors and cuts well, and uses the touch mouse on my MacBook Air so the poor fine motor skills are not adding up at home.  I explained how in preschool when he was uninterested in a lesson how he would stop paying attention, go play and yet still learn the lesson because he was still listening.

Grant and I both said that we did not doubt that Tyler was making explosive noises but that he does not do that at home except when he is playing and we had never heard him speak anything but English.

We told them we were aware of Tyler’s verbal attacks and that we have an appointment scheduled for a child psychologist.

As Grant and I talked, I could see the team’s faces; lightbulbs going off in their heads, and all of them taking furious notes.

Unfortunately we were out of time!  We all agreed that for two weeks his teacher and his support teacher would work on trying to minimize Tyler’s disruption to the class and that we would meet again.  The Guidance Counselor told us she would be happy to start working with Tyler now that she had a clearer picture.

That night we received a call from the woman assigned to be Tyler’s Case Manager.  She said that she and the team were blown away at how Grant and I had contributed to the meeting.  That more than half the time the parents do not even show up and if they do, they don’t say a word.  She thanked us for being willing to share so much of Tyler’s background and that this was one of the most productive meetings she had ever been at.

Grant and I were surprised.  Aren’t parents supposed to show up to these meetings?  Aren’t they supposed to say things that can clarify what the teachers are seeing in order to better understand their child?

I don’t give ourselves any extra credit for “coming off” well at the meeting.  It’s just what any good parent would do for their child.

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The Easiest Speech Ever!

Inspired by Mama Kat’s Writer’s Workshop.

Prompt 3)  Speech!  Tell about a time you had to speak or present in front of a group of people.

For being a college graduate who majored in Communications, I have never had to give a speech or a presentation in front of anyone since!  After I graduated I went into professional radio for seven years to be followed by eight years of the Headhunting business before I became permanently disabled.  I have had to train small groups and make one on one presentations but nothing that could be thought of as a speech to a large crowd.

I think it was freshman year in college when I had to take a course entitled “Oral Communications”, which when I think about it now, sounds a little dirty to me.

That course was full of having to give speeches of at least five minutes long.  Like most people my age I would struggle with it, especially having to do a speech a WHOLE five minutes long.  Was I at five minutes yet?  I had been acting since I was 11 years old but the idea of actually doing a speech was pretty terrifying.

I managed to do okay in the course and when it came time for our final project, the professor explained that we could do a minimum ten minute speech on something of our choosing, or an Oral Interpretation.  An Oral Interp was where you read from a book for ten minutes, with feeling.

As an actress, this was the easiest thing in the world to me!  I knew right away what I wanted to do and the professor gave me her blessing.  My brother had given me a script in book form of one of my all time favorite movies, Woody Allen’s Hannah and Her Sisters, which had won the 1986 Academy Award for Best Actress and Best Supporting Actress. Besides being a comedy, the movie exposed a naive 16 year old me to the concept of infidelity.  I so wanted to be either Mia Farrow or Barbara Hershey!  I even had the soundtrack; Woody Allen was famous for his musical selections which mostly were made up of jazz and classical music, also an education for me.

I chose the scene in which Barbara Hershey (Lee) reveals to her much older lover that she has been having an affair with her sister Hannah’s husband and that she is in love with him. That movie had so many favorite scenes for me but this scene read really well as it only had two people in it.

I played Lee and her lover, taking turns arguing.  I loved the movie so much, the raw emotion of the scene came easily for me.

I don’t want to brag but I was a good enough actress to hold my class spellbound.

Only one other person in the class chose to do an Oral Interpretation.  The rest of the class had looked at the project as more torturous than giving a speech.  I remember he chose to read something from The Catcher and the Rye.

I don’t know what he got but I know that I got an A.

That was pretty much the last speech I ever gave in my life, with the best results ever.

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Tuesdays With Tyler: The Fall Festival!

One of the things I love about living where we do is that you can be in New York City one weekend and down on the farm the next.  All of you people who make fun of New Jersey think about that one!

The Fall Festival at our local farm is a mostly annual tradition.  We didn’t go last year because Tyler’s preschool took him there on a field trip but if you want to read about Fall Festival 2009 and compare pictures of Tyler you can do that here.

The thing I like about it is that it is a lot of stuff in a very compact area and is walkable for me. They also have great handicapped parking. Thanks to Grant receiving his disability we have a little more breathing room and it was one of the first times in literally years that I did not worry so much about what we were spending.  I cannot tell you how it feels NOT to have that sinking feeling in the pit of your stomach when you are trying to have fun but worrying about all the money that is going out. We can’t go crazy because we desperately need my disability but we can have a little fun.

The first thing we did was eat!  I had BBQ-ed beef with macaroni and cheese and okra on the side. Yummy!  Tyler was happy with his mac and cheese.  The picnic tables were right by the band which was a little loud for Tyler and I.  I love the heat and it was about 80 degrees.  Tyler and I both wore shorts. Shorts on October 9th, yes!  I would be happy with this weather all year long and I am treasuring these last few hot days.  But Tyler felt it was too hot to eat so much.  “Sun, I am going to kill you, sun!”

After our feast we went on the hayride to where you go pumpkin picking.  As I was bumped around with the rest of the our fellow hayriders I thought about how only during pumpkin picking season would you be willing to pay almost four dollars a head to be on the most uncomfortable ride of your life!

Grant, Tyler, Me and my breasts on the hay ride. Yes, my breasts deserved to be named as you can plainly see.

 

Our hayride driver with the pumpkin patch in the background.

 

After the hayride we found a Talking Pumpkin who told us how he came to be, from seed to the way you see him today.  Too cute!

 

And then it was time to pick our gourds and pumpkins to decorate the inside and outside of our house.  Along with some apple cider, apple cider donuts, New Jersey blueberry iced tea and old fashioned candy!  I treated myself to some gourmet peach and vidalia onion salsa and we even found a little stuffed Spookley the Square Pumpkin for Tyler.

It took everything Grant and I had to attend this festival on Sunday.  I was depressed, thinking about how if it wasn’t for Tyler I would be able to be resting at home comfortably and not exposing myself to increased pain and fatigue.  Grant has agoraphobia and at the last minute he decided he was coming with us.

We all wound up having an awesome time.  When we got in the car I thanked Tyler.  “I would have never gone to the Festival if it wasn’t for you, honey, and I had the best time.  I am so happy that you are in my life, because you take me to places I would never go to.”

And yes, I did feel crappier than usual yesterday, but you know what?

It was worth it!

 

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Review and Contest for Cleopatra, A Life

I read Cleopatra A Life as a member of the From Left to Write book club. I was given a free copy as a member of this book club, however, the opinions expressed in this review are my own.  

When I signed up to read Cleopatra A Life by Stacy Schiff, I have to admit I had some doubts that I would be able to get through the book.  Biographies are not one of my favorite genres, and a historical biography?  I had never even read one before.

It was a little difficult at first getting into the tone of a historical biography but after a few chapters, you could say I had “gotten it”!  Stacey Schiff makes it easy as she writes more for the common person than the historian.  I was quite impressed with Ms. Schiff herself as she has written biographies on Benjamin Franklin and has even won a Pulitzer Prize for her biography Vera (Mrs. Vladimir Nabokov).  When I think of an historical biographer author I am more apt to think of an aging college professor.  Ms. Schiff looks more like a model.  She definitely breaks that stereotype wide open!

Cleopatra is one of those iconic figures in history where everyone thinks they know about her, but what everyone thinks they know has been gleaned from William Shakespeare or Elizabeth Taylor, and not actually historical fact.  The author even admits that indeed, there is not a lot of facts on Cleopatra and someone who takes on the Egyptian Queen has to sort through even the history written while she lived, trying to recognize fact from fiction.  It seems even back in 29 BC Egypt and Rome had their own versions of Perez Hilton and Rush Limbaugh.  Ms. Schiff does an admirable job of filling in the blanks and is honest that there is some speculation on her part.

As I got into the book I found myself reading it as if it were a novel that you can’t wait to find out how it ends.  I knew Cleopatra died, of course, but did not know the real particulars of it. Do not let the “biography” classification of this book stop you from reading it.  Romance, sex, deceit, betrayal…this book has it all, although if you are looking for Danielle Steele, this isn’t your type of book.

Would you like to win a gently used copy of Cleopatra A Life?  Entering is easy and you have three chances to win:

1. Leave a comment below.

2. Tweet out the contest.

3. Post this contest on your Facebook wall.  

If you tweet and Facebook the contest, please let me know by leaving two more entries.  In other words, if you have commented, Tweeted and Facebooked, you will have THREE separate entries.  

The contest will end on Tuesday, October 18th at 11:59 p.m. EST.  A winner will be chosen at random.  Good luck!

 

Congratulations to Joy, winner of Cleopatra A Life.  Her number, #2, was chosen by the very random asking my husband to pick a number: 1, 2, or 3!  This is a great book that whether or not you buy or borrow, will not disappoint you!

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The School Called

Yesterday afternoon I woke up from my nap about half an hour before Tyler gets home from school. Grant was just sitting on the couch.  “You better sit down”, he said.  I didn’t get my disability, someone has died, are the thoughts running through my head.  “Tyler’s teacher called”, Grant said slowly.  She said that Tyler has been disruptive to the class, taking the form of him making explosive type noises and movements throughout the day, and not being able to stand in a line.  She said she was unable to tell if this was his OCD or Tourette’s as he was not being destructive towards others, it was all directed to himself.  She also said he was delayed in his fine and gross motor skills.  Grant said she was very nice and that she really liked Tyler.

“We meet with the school on Wednesday”, he told me.  I was in shock and I said, “For what?” “To see how we can help Tyler.”

I felt angry at the teacher.  We had been having problems with Tyler at home, mostly with anger, but when I met face to face with her two weeks ago on Back to School Night, she assured me that Tyler was doing well in school!  We had been so relieved.  To everyone who would ask I would say, “Knock on wood and thank God, there has been no trouble at school.”  We were thanking whatever lucky stars we had that Tyler seemed to be able to handle a “normal” education.  Just yesterday I had made an appointment with a child psychologist.

I told her, “Tyler is an angel about 90% of the time, the other 10% is a big problem.”

And now I feel like a walking zombie knowing that what I told her yesterday was not the truth.

I know my anger is misguided but I want to yell at the teacher, “How did you look at me two weeks ago and tell me there were no problems with my child?  Why did you let me think that??”

I realize that this teacher is one who has been teaching kindergarten for over 35 years and that her approach was to try to diffuse the situation herself, and her calling us yesterday was her saying “I cannot do this alone.”  But I can’t help feeling angry!  She let us think there were NO PROBLEMS at school with Tyler!  She allowed us to breathe false sighs of relief, to live in a state of ignorance!

Gross and fine motor skills??  Yes, I knew that Tyler was behind but I have been seeing improvements that she could never see, not knowing him for that long.  I see the way his writing has improved and how his artwork is getting better.  I watch him use the grownup scissors when we do his homework and am amazed at how well he cuts with them!  For godsakes, this is just kindergarten, and he has only turned five a month ago, just how advanced is he supposed to be??

Doesn’t she know how smart Tyler is?  All I have ever heard from teachers and ordinary people was that Tyler was an extremely smart child, a special person.  How funny he is? How empathic?  How strangers’ mouths drop open or how they laugh when they hear my son speak?

Where is that boy in all of this???

Grant and I had no time to grieve.  It was time to go to the bus stop.  We both want to shut down, or at the very least, call our friends and family, but we are up against a three day weekend and how are we going to talk about Tyler when he will be with us all weekend long?

I feel so thankful that I have this blog, this outlet for me.  Where I can get it out and let the tears fall as I write these words.

Last night we questioned Tyler about the explosive noises.  We gave him very little explanation and he knew exactly what we were talking about.  We stressed that we were not mad at him, for him to just tell us the truth.  “Tyler”, Grant asked, “Can you stop doing those things at school or do you feel you have to do them?”  “I can’t stop it.  I have to do it, daddy.”

Maybe this is strange but I felt a bit of relief at that statement.  Tyler is not being “bad”.  It is either a tic or his OCD.  We can help him, this is not a new diagnosis, he is not a “bad kid”.

A large part of me wants to scream at God Why?? Isn’t it enough that Grant and I are disabled? Why did you have to saddle my child with a whole other set of disabilities that for the most part are very different from our own?  How are we supposed to deal with this when we are already so taxed with our own sicknesses and the poverty and stress that come with them? How can you throw this at us too?

One thing we do have going for us is that Grant used to be a Consumer Advocate for children with disabilities, and we have that knowledge going into this meeting what the school is obligated to do for us.

Until then, and especially this weekend, I need to put this news behind me and concentrate as always on giving Tyler the unconditional love he needs and making my head rule my body as I must keep on going, keep on doing the normal weekend stuff and going forward with the plans we had this weekend, like going to our local farm’s annual Fall Festival.

There is nothing I can do this weekend, nothing I can do until Wednesday, except to continue to strive to give Tyler the childhood and life he so very much deserves, as much as my disabilities or money will allow.

And this weekend, keeping it all together is the most important thing I have to do…for my son.

 

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