Tuesdays With Tyler: Not Special Enough

Tyler has some special needs but often they are not readily apparent.  Because of this, I find that people like to declare that he is fine and I am making too big a deal about minor things.  This, is for them:

When you see my six-year-old son have a temper-tantrum that is more suitable to a three-year-old, it is not due to my lack of parenting skills, it is a part of his diagnoses.

When you see me give into my son, it is not because he is spoiled.  It is because I have been correcting him all day and he needs to win some battles, he needs to feel some control over his life.  I don’t want him to think of himself as a “bad boy”.

My son’s poor writing skills are not because I have not worked with him.  He is delayed in his fine motor skills.  I have worked with him but I am not an Occupational Therapist.

Yes, my son does not appear to have Obsessive Compulsive Disorder.  That’s because when you see him he is having fun, there is no stress in his life. And the symptoms you do see, like him needing to stand in one place while we walk or him having to take a step forward and a step back are not due to him being just a silly kid.

You are not there when I need to pull him away from the sink to stop him from washing his hands.  You are not there when he screams in terror if he is left alone in a room.  You are not there when he hits me and then guiltily apologizes, telling me that even when he hits me he always love me.

All of his doctors as well as the professionals in his school do not doubt me because it is obvious when he is examined, obvious when he cannot stand in a line with the rest of the class, or freaks out when he gets dirty, and obvious when he submits a writing sample.  It is so obvious that he receives Occupational and Speech Therapy in school.

The only people it is not obvious to are you, so when you get your degree in Pediatric Neurology or in teaching, feel free to offer your opinion.

Thank you.

 

 

 

 

 

Why I Stay

(I read Lost Edens as a member of the From Left to Write book club.  I was given a free copy of this book.  This post is inspired by the book.

Welcome to all of my fellow book club members or anyone coming here for the first time!  I am a chronically ill mom married to a chronically ill man and we are raising our five-year-old son, who also has some special needs. My blog focuses on the challenges parents with chronic illness face, but also speaks about being a mom and a woman in general. )

Lost Edens by Jamie Patterson is the true story of a woman who decides to take her husband back after he admits to having an affair.  She does this without the support of any of her family or friends, there is not one person behind her, but Jamie is determined to make it work.  Throughout the book there is evidence of her husband having some serious mental illnesses.  And that’s all I am going to say because I don’t want to ruin how this amazing book turns out.

I am married to someone with severe mental illness, so severe that he receives disability as he is no longer able to work.  If you don’t know much about the Social Security Disability process, you pretty much need to be near death or severely mentally ill to be able to get disability on a first time application.  My husband was a “yes”, on his first try.

Grant has had mental illness since he was a teenager.  He spent his teenage years (in the mid ’80s) suffering until he was diagnosed with bipolar disorder.  In college he drank and abused prescription drugs and marijuana in an effort to self-medicate.  He got the most help when the ground-breaking drug Prozac and others that would follow became available to the mentally ill population.

When we met he was pretty well balanced, mental health wise.  The drugs were working for him.  Ours was a long distance relationship for a year when we decided that he would move to New Jersey from Ohio and move in with me.  I was 31 and I knew this was something special.  Grant was loving, generous, sensitive.  I had never met another man like him and I felt truly loved and respected.

We married in 2002.  Grant had a good job working for an insurance company that was free or at low cost for poor families. Unfortunately he happened to have the boss from Hell, and it wasn’t just him who thought so.  Part of what I loved about him was his sensitivity but it did not serve him well when it came to this woman.  Eventually, despite asking for an accommodation, they were not able to work things out and it was a mutual decision that Grant leave his job.

In his next job he worked as a Consumer Advocate, helping parents of disabled children get the services they deserved in the public school system.  Grant has never had a job that did not benefit mankind, something I really admired and envied, as while I liked my job, I often felt unfulfilled.  What was I doing to benefit humanity?

Unfortunately, after a couple of years, Grant began having difficulty there too.  He had trouble getting out of bed to face the day.  He had trouble getting through the day, and due to his OCD he was unable to keep up with the huge amounts of paperwork that the job required.  He had never asked for an accommodation and was fired in May of 2007.  He has not worked since.

When our son was born in 2006…I don’t want to blame him because Grant and I don’t regret having Tyler for one second.  Having a child, being a first time parent is hard for anyone, but for Grant it was like difficult times ten and throughout Tyler’s life I have been watching Grant sink deeper and deeper into his illnesses.

Grant is now to the point where he spends a good deal of the day just sleeping, having to medicate himself (under doctors’ watchful eyes) because life is sometimes too painful. The stress of me being chronically ill and collecting diagnoses along with our son having Tourette’s Syndrome, OCD, Anxiety and probably more doesn’t help.  Again, any husband or father would struggle having a sick wife and a child with emotional problems but for Grant it is times ten.

It’s no surprise that Grant’s mental illness has put a strain on our marriage.  Sometimes his mental illnesses make him say things that he doesn’t mean.  He will come up to me and say, “I want a divorce” or “I can’t do this any more, I need to leave, I need to go away”, only within the hour to come back to me and say he didn’t mean it and he loves me and is sorry.

It has been hard on me but I have learned to harden my heart and, as difficult as it sounds, take these kinds of things he says with a grain of salt.  Of course these conversations are not without damage to me, I would have to be soulless to say they aren’t.

I once called his therapist, crying because I couldn’t take it any more, I just couldn’t keep going on this roller coaster!  His therapist told me, “Emily, Grant adores you!  He loves you and does not want to leave you and Tyler. It is just his mental illness talking, he does not mean it!”

But as I said, these conversations do do damage to my heart and soul.

So, why do I stay? 

Because Grant is doing the very best he can.  He takes his meds, he sees his psychiatrist, he sees his therapist. He doesn’t stop trying every day.

I stay because of the love and support he has given me.  Me, with my over a dozen diagnoses and counting.  I cannot tell you how many men leave their wives when they become chronically ill, how many men cheat on their sick wives.  Grant is my biggest cheerleader.  He is my best friend.

I stay because, although he is not a perfect one, he IS a good father and tries every day to keep being a better one.  He cares almost too much about Tyler and agonizes over trying to do right by his son.  Meanwhile, Tyler thinks that Grant is the best daddy, the funniest daddy in the whole world.  Tyler doesn’t care that Grant is mentally ill, he still thinks his daddy hung the moon.

I stay because I took marriage vows.  For better or for worse, for richer or poorer, in sickness and in health.

And the number one reason why I stay?

Because no matter how the mental illnesses are destroying him, Grant is still the most loving, generous and sensitive person I have ever met.  

That person I fell in love with is STILL there.

 

Wondering About My Son’s Future

(I read Carry Yourself Back to Me by Deborah Reed as a member of the From Left to Write Book club.  I was given a free copy of this book.  This post was inspired by the book.)

The thing I like most about our book club is that you do not write a review of the book, but must write a post about what the book makes you think about.  As soon as Annie Walsh’s brother, Calder, was introduced, within the first dozen pages or so, I had my inspiration.  I caught on right away that something was not “right” with Calder, as the author and Annie noted his tics, and that they had started again.

Tourette’s Syndrome.  My son has had it since he was two and a half years old.  Yes, you read that right, two and a half.  There is a family history of mental illness, including OCD. Males are affected three to four times more often than females.  And after extensive trauma in his life and being bullied by his former friend in daycare (yes, bullied), my son was a trussed up target for Tourette’s.

I’ll never forget the first time I saw it.  Tyler kept blinking his eyes, hyper-blinking.  I thought at first “allergies”, but he had no other symptoms.  We then took him to an opthamologist who prounounced his vision better than most toddlers his age.  We were baffled.

But then we began to notice sniffing, throat clearing, heavy breathing and yawning.  I called the pediatric nurse a couple of times in a panic only to be told if my son was having trouble breathing he would be “laying like a wet towel on the couch.”  Tyler was not only NOT sitting around, in fact, the blinking, sniffing, coughing, etc. seemed to get worse when he was active.

Finally at three-years-old, a Pediatric Neurologist diagnosed my child with Tourette’s, along with Obsessive Compulsive Disorder.  I did not want to believe it; just because my three-year-old put together a puzzle in a certain way, he had OCD??  Maybe he was just smart!

But sure enough, the OCD has also manifested itself in my son.

I think in my child’s five years of life, the worst time with the Tourette’s was when he started coughing uncontrollably when we would try to put him in his “big boy” bed.  Tyler was so scared about being left alone in a room (and STILL is) that he would begin to cough.  “I can’t stop coughing,” he would tell me, and I would try to rub his back to soothe his anxiety. Finally, after this going on for a couple of weeks and him not being able to sleep, every night to midnight or one ‘o clock, I took him to bed with me, where, being with his Mommy, he was finally able to stop tic-ing and rest peacefully.

Between sleeping in a sleeping bag by my bed and being in bed with me, Tyler spent almost two years in my room, with Grant forced to sleep on the couch.

A lot of mothers said it was the wrong thing to do, but I say until you live it, until you helplessly watch your child cough so much he can hardly breathe, then you can tell ME what I should do.

And now he has come to the age where he realizes that sleeping with Mommy is not the right thing to do.  He is still too scared and anxious to sleep alone in his own room and so he has graduated to the love seat, where Grant still sleeps on the couch.  Someday I believe I WILL have my husband back!

With Tyler’s form of Tourette’s, he is mostly able to hold back his tics during the school day. As soon as Grant would pick him up from pre-school he would start to tic.  Like many children with Tourette’s, he feels comfortable enough with Grant and I to “let loose”.  He has only been in kindergarten for a few weeks but even through pre-school, the Tourette’s never affected him “academically”.

At Tyler’s age, it is common for the tics to wax and wane, and for many months now, except for a few weeks when he was very nervous about starting kindergarten, we have noticed few tics.  It is indeed possible that he does not have true Tourette’s; that this is just developmental, and that he could stop tic-ing altogether.

But I can’t help wondering…will he be able to make something of himself like Calder was able to in Carry Yourself Back to Me, or will his Tourette’s lead him to trouble, like it also does with Calder?  I worry about him being teased in school.  I have heard all of the great success stories of kids who had Tourette’s and grew up to be extremely successful and then I have heard the stories of kids who fall in to drugs, get in to trouble with the law, and wind up living with their parents in their adult years, unable to even get a job.

As a parent, all I can do is to do my best to educate myself, to observe, and give Tyler the help he needs.  At this time Grant and I are looking for a child psychologist for him.

And I can love him…

and…

Wait.

Myths About Tourette’s Syndrome                                                                                                             

 

 

 

Tuesdays With Tyler: You’re in the Army Now

(On my husbands laptop, again.  You know, the one where his possessive/quote key doesnt work?  Sigh.  I am hoping this is no big deal but it seems that MY computer will not take a charge.  I am trying not to think about it but…ahhhh…not again, this will be like the third problem in three months if this is a major thing!  Maybe I should move into the Mall that has the Apple Store.  Theyve got a food court so I can eat, Starbucks so I can drink, one of the best Disney Stores in the country, and a Sleep Number bed store so I can rest comfortably ever night. Hmmm.  Anyway, this disclaimer is to state that I do not have a serious grammar/editing problem.  It is not me, it is just my husbands computer which does not want to render its possessive/quote key workable in certain applications, like Word Press, lucky for me.)

This summer, you may remember, after Tylers preschool graduation, we decided to take him out of the school and enroll him in some of the summer camps offered to us by our school district.

The first camp was called Kinder Fun but it was more like You know how you were coddled every day of your life in daycare?  Them days are over, kid.  You are in kindergarten now, you are in public school and its time to kiss your pansy, fancy, sweet private school goodbye.

Tyler: An Innocent, Unsuspecting Kindergartner

The first day of camp was in June, the Monday after graduation.  In traditional daycare fashion, I stuffed a change of clothes, sunblock, hand sanitizer and some other stuff I cant remember now, along with the required snack and water in the backpack.  Yes, I know camp was only three hours a day, but you never know; my kid, especially in a new surrounding, may forget where the bathroom is, as would many, am I right?

On the first day I was allowed to set him up in his very own cubby.  Tyler was perfectly happy so I beat it out of there quick.  On the second day, I was not even allowed to come into the room!

Weve got him now, Mrs. Cullen, hell be okay, he knows where his cubby is.  Well see you later.

When I picked him up on the second day they had formed a sort of roll call.  The moms or other caregivers had to line up at exactly 12:00 and two by two they called the kids.  Olivia? Tyler?  Come and get your stuff, your moms are here to pick you up.

I looked in and saw all the children seated in a square, sitting as perfectly still as Stepford children. How did they do that?  Tyler went to his cubby and gamely tried to walk with his stuffed backpack. As he started to fall over, I rushed to help him, and his teacher, whom I will now refer to as Mrs. Drillsergeant, said to me Thats okay, Mama, he can do it himself, he has to learn to be independent from you.

Excuse me, maam, I said.  But my son CANNOT carry his backpack, it is too heavy, he needs some help.  

Mrs. Drillsergeant looked at Tyler teetering and grabbed his backpack for him and handed it to me.  I told her I would try to thin out the backpack as much as possible so that he would be able to carry it on his own.

The rest of the two weeks was uneventful.  Tyler studied the Everything You Never Needed to Know About a Bug and Will Never Use the Rest of Your Life unit.

Mommy!  Did you know that bugs have a Thorax and an Abdomen?

No honey, Mommy did not know that!  That is so cool!

In fact, I dont think I ever studied the body parts of a bug throughout my years of elementary, high school and college education!  I hate bugs!

At the end of camp I asked Tyler how he liked learning all about bugs as during the two weeks he brought home cutouts of a bee, a lady bug made out of a paper plate and a butterfly held together with a clothespin.  His major project was an entire book about bugs. To which he replied to me, I dont like bugs.

The next camp that took place about three weeks later was Sports Camp, a week long camp where Tyler would learn the basics of soccer, basketball and floor hockey.  I have to say it was actually a pretty neat thing.

We did, however, have two incidents. Yes, two, in the one week of Sports Camp.  On Wednesday, the teacher said to me, Tyler had a little accident, he didnt quite make it to the bathroom on time so he got a little wet.  He pulled down his pants to show me and I was like No Thank You, I Dont Need To See That!  She presented his underwear to me in a baggie as if it was some sort of Hazardous Waste material.

But he had an entire change of clothes including sneakers in his back pack! I protested.  She just looked at me with a blank stare.

On the last day of Sports Camp, the teacher was waiting to talk to me.

Tyler had a little problem today, she began to say.

Oh, God, what did he do? I am thinking.  Did he beat someone up?  Kick a teacher?

Tyler is going to have to learn that we dont go around kissing children, or things in kindergarten.

Thats it?  Thats the big trouble?  My kid might have kissed a little girl…or a hockey stick?

Mrs. Cullen, you need to talk to Tyler about his behavior because I will tell you, that sort of thing is not allowed in kindergarten and if it continues we are going to have a real problem here.

I guess those Halcyon days of pre-school, when Tyler had a steady girlfriend since the age of three, were over.

Grant and I did talk to Tyler but what were we going to do to him?  Was a sexual assault report going to be filed by the girl in question, or the hockey stick?  We just told him that it is okay to kiss girls but not in school any more and that you never kiss a girl who does not want to be kissed.  How much could I talk to my child about how wrong it is to do something when he was just being a normal little boy?

Three weeks after that (which is now two weeks ago) Tyler had his final camp, called Kinder Prep. This was it, kindergarten boot camp.  He had Mrs. Drillsergeant again for his teacher. One day on the car ride home from camp Tyler said, Guess what, Mommy?  

What, baby?

My teacher is really a man and she kills other men!

Tyler!  Your teacher is most certainly a woman!  She is married and she has children!

No, she is a man.

Tyler…Mrs. Drillsergeant  just has short curly gray hair, and she is older.  Sometimes, some women can look a bit like a man when they get older but I can assure you that your teacher is definitely a woman.  

On Thursday when I picked him up from camp Mrs. Drillsergeant and the camp nurse were waiting to see me.  I was panic-stricken, but I saw that my child was upright with no bruises or bleeding.

Tyler had a meltdown today, Mrs. Drillsergeant told me.  He was in line waiting to use a toy and he got upset because he didnt want to wait any longer.  When I told him he would have to wait some more, he became hysterical.  I had to call the nurse because I could not get him to stop crying, he told me he could not stop and then all of a sudden as the nurse and I are looking through Tylers medical file, he switched it off and was totally fine.  My question to you is, What do you do when he does this at home, how do you stop it?  I also have to tell you, Mrs. Cullen, that I am going to have 23 children in my classroom and that if Tyler cannot wait for something NOW with just 10 children in camp, he is never going to be able to wait, and we do a lot of waiting here, and this IS a full-time school day.

I was stunned.  I wanted to beat up Mrs. Driilsergeant and the school nurse with their looks of concern and hug my child and never let go.  Why the Hell hadn’t they called me?

He-he-he…doesn’t do this at home.  The only time I could think of where he did have an incident like this was when he fell in the hospital on his hurt arm.  He couldn’t stop crying, he was so traumatized and then it became almost an Anxiety-Tourette’s-OCD type of thing where he literally could not stop crying.

I also mentioned that Tyler did not have a good night’s sleep last night and that could have been a factor as well.

Well, you need to teach Tyler how to wait his turn.  I know he is an only child but you are going to have to set up scenarios in which he will have to wait, like take him to the grocery store and he will wait at the check-out line with you.  

Umm, I rarely go to the grocery store because I cannot walk and taking Tyler to any store is just as hard as taking him to an amusement park for me.

Also, I know it is summer time, but you need to get Tyler on a school schedule.  Bedtime at 8:00 and then up at whenever he needs to be able to get to school on time.  

8:00 bedtime?  I can count on one hand how many times Tyler has fallen asleep by 8:00.  I consider it a victory if he is asleep by 9:30.  The kid never sleeps, not even when I was pregnant with him.  The pediatricians have always said that the amount of sleep that Tyler gets, while on the low side, is still within the normal required amount of sleep for children at whatever age he has been.

You have two more weeks.  Start him on a schedule now.  Make up waiting and patience exercises.  I’ll see you both tomorrow.

As I drove home, peering at my exhausted child in the rearview mirror and realizing what he had been through today…was I going to punish him?  Have a BIG TALK with him?  Tyler has Tourette’s, Anxiety, OCD, Depression and some sensory processing issues.  He had just been TORTURED!  

I took him to McDonald’s and got him a Smurf.

Last Friday night I was on my computer and an email came over.  “Your child’s teacher assignment”, along with lots of other information.  Excitedly I opened up the email and guess who will be teaching my child as he begins his elementary school career?  Yep, Mrs. Drillsergeant.  Being the oldest of the kindergarten teachers, apparently she is allowed to hand pick whom she wants in her class.

And she wants Tyler.  My baby.  I am going to try to believe and pray that she picked him, not because she wishes to tame my beautiful, wild-child, but that she wants to help him get on the road to succeeding in school, despite his disabilities.

But for the first time, now from a mother’s perspective, I get the problems of a public school education, and I understand those who have said no to it and decided to teach their children themselves.

Well, it’s only kindergarten.  I guess we’ll just have to see how it goes.

Ah, school may look fun now, but JUST YOU WAIT!