Monday, October 13, 2014

Morgan ~ The missing Pieces to her puzzle

Freedom and relief is what I expected to feel this past Friday when we left Morgan's appointment at Children's Hospital in Boston. We were there just two weeks before, for neuropsychological testing. Last Friday we were given the results.

I didn't feel free or relieved when I saw the pain on Morgan's face and the frustration in her voice, when she looked at us and said " I have to stay like this?" And later found out, that she thought we were there to "fix" her rather than find out something was actually wrong  different about her brain. She heard words we had never said to her before, and I cannot imagine how confusing and scary that must have been.

I feel we made the right decision on having her tested and now only wish I'd listened to my heart sooner, and done this years ago.  I've looked up her "quirks" for years and always found myself reading about kids on the Autism Spectrum and thinking, could she be? And felt it was a possibility.

The Doctors at Children's explained that she does have a lot of the characteristics of A LOT of different disorders, but she always seemed to be lacking the key piece they use to make the actual diagnosis. Except in two things that seemed very obvious.

"Your child has a very complicated profile" ..."how she has gotten this far in school, we don't know."

"Morgan suffers from communication impairment in the ability to receive, send, process and comprehend concepts of verbal, non-verbal and graphical symbols."

"She has a speech and language impairment of the articulation of speech sounds, fluency and voice. Impairment comprehension and or use of spoken written or symbols systems."

"Morgan also has Dyslexia, a learning disorder characterized by difficulty reading due to problems identifying speech sounds and learning how they relate to other words."
"By the time a child is a certain age they have developed a word bank in their brain of commonly used words. Morgan's word bank is underdeveloped."

"We also believe this is causing her to have anxiety and making her feel as if she is out of place, or socially awkward as she calls it."

"How she has gotten by so well in school, is amazing."

How in the world didn't I realize this....

For years I watched as Morgan was misunderstood, by teachers and eventually friends and even family. It was heartbreaking, for me.

And I feel terrible for not realizing what it must have felt like for her.

I never had any answers for why she did the things she did does.

But now, it makes so much sense!!

Over the years, mostly since being in middle school.

Morgan has been referred to as being "rude & "snarky"
(by a teacher)
The same year was compared to a baby (again by a teacher) has been singled out in front of the class (by another teacher) has been accused of lying, withholding information and purposefully ignoring people.
All by people who know her and see her on a daily basis.

Watching someone trying to have a conversation with her is sometimes painful... I cannot imagine what it is like, for her.

Morgan is in the 7th grade and is unable to use a dictionary effectively...but can build just about anything and make it work.

She doesn't measure anything..but she can design a costume better than most adults.

Calendars don't make sense to her. Neither do weeks and months. But she can fly a plane.

As we walk down our new path, I will continue to share about Morgan as long as she's comfortable with it.  In time I'm sure she will open up about how she feels about all of this new information. Until then she has given me permission to share my feelings on it, as long as I consider letting her have a puppy!

These are the things that make Morgan who she is, guaranteed she will not let this stand in her way!

Wednesday, January 29, 2014

The endocrine's one tricky Mofo

The Endocrine system is one tricky MoFo...ok that's not what he really said, but thats what I heard.

I also's time to dig a little deeper into whats going on inside your body and I promise you, I will try to figure this out...I'm sure the look on my tired face and the tears in my eyes helped getting my point across... I'm trying to think of everything I can tell him about the past few months, every little symptom..every little ache..every little pain.

He explain's we will start with's easy enough. He goes on to tell me what he thinks and what he will test for to start. But he knows what is in the back of my mind and he knows that is why I can't seem to think straight. I can't bring myself to say it out loud and he doesn't mention it either, but I know he will test for it.

It has been 12 yrs since I was diagnosed with thyroid cancer...I may be cancer free..but I will never be free from cancer. It's always there, like a skeleton in your closet. It taunts you..reminds you..and scares the living shit out of you no matter how hard you try and forget you ever met.

I am relieved. All you want is for someone to listen.  I decided to see my primary care physician this time, not my endocrinologist. I needed someone to start looking at other things, not just my thyroid.

You go to these Doctors and you trust them to do what is best for you.. I've asked before for more than just a TSH test and been told I didn't need it. I think I have a pretty good relationship with my endocrinologist but recently I have felt like more of a number instead of a person with a voice.

Thyroid symptoms suck.

I hate that I am on medication that is constantly changing and I hate that this controls how I feel on a daily basis.  Most of the time I am able to push through and mask how I really feel. Nobody wants to hear you complaining about how tired you are or how fat you feel. Eventually you will feel like it's always an excuse..Eventually you will feel like shit about not being able to do the things you want.
Eventually the guilt will build and then maybe if you're lucky the depression will set in.

I step on the scale before I leave the Doctor's office and I hate the number I see.. I work so damned hard to make it to the gym and work out even harder when I get there. Working hard and getting no results is hard..but I will keep trying.

There are days I am uncomfortable in my own skin.  You would think I'd be over it and used to it by now. I tell myself I need to let it go,  I have to just make the best of this. Sometimes thats just not good enough.

Yes I am alive..Yes I am a survivor.. I should be more grateful...but I don't always feel that way. .

It's like having your dream car and then someone telling you, you have to trade it in for a clunker and while you're at it you can only put water in your gas tank. Good luck getting it to run smoothly... Now make the best of it and have a nice day.

FUCK YOU!!!...I want to say..I don't want this mind or body anymore..I want to be me again..I want to be who I was before cancer decided to show up.

I feel like this today, but might not tomorrow. It's a roller coaster ride I wish I could get off, but instead I just hold on tight...

I WILL make the best of what I've been dealt..and I will try like hell not to let this ruin today or determine my lifestyle tomorrow.

Thursday, January 16, 2014

Unraveling Strands

Ever watch your child unravel and as hard as you try you can't stop it...watching each strand of what calm and understanding they have, break one by one???

That was our morning...

Morgan is 12 and is currently on the waiting list to be tested for Aspergers Syndrome... The idea of her possibly being on the spectrum is not new to me. It's something that was pushed aside for many years while I searched for reasons why she does the things she does.

Now that we have taken the steps to put her on the list and say the words out loud and to her face, it's opened my eyes wide and it's given us all more of an understanding about how Morgan's mind works. Sharing Morgan has been great and connecting with other parents that let us into their lives has also been amazing!

Parenting my oldest daughter Sarah was so much different. She was stubborn, but you could reason with her. She would spout off and maybe we would yell, but once we said what we needed to say it was usually over and it was case closed..She is still like this at 15, very reasonable and even though she is a teen I'm very lucky she is able to communicate her frustrations in a mature way.

Parenting Morgan is totally different..

This morning was frustrating, it took everything I had not to yell in her face because she was being unreasonable... unreasonable to who?? ME... Her thoughts in her mind were valid and here I was telling her they weren't because she couldn't see it my way...

I forget sometimes she thinks differently and I need to approach things in a different way...Somedays I can catch it and somedays she just starts to unravel and there's nothing I can do...and then it's over. She shuts herself off and there's NO getting through until she is ready.

Sometimes it's lasts for hours and sometimes depending what it's about it can go on for days until it's rectified. I have to remind myself that in her mind everything has to have an absolute concrete matter of fact reason why it is the way it is..there can be no maybe.

This morning we ran out of chocolate chips for the pancakes that was strike one...I will get more today, don't worry!! Strike two was me starting the dishes at 7:25, we leave the house around 7:30 and we take the long way to school. We have found this is a extra thing she likes and it helps us get out of the house on time in the morning..we take the long way to school and she listens to the oldies station. Like her pancakes she looks forward to this everyday. So me doing the dishes 5 minutes before we should leave, she thought we wouldn't have enough time for her "loop".  Third strike was she ran out of yarn and I didn't post the 3 scarves she made on Etsy yet..she knows she has to get paid to buy more yarn and today in her mind that is the dumbest idea..cue full blown argument..

We manage to get out the door the whole time she is mumbling under her breath..she is mad and her reason for being mad is not making sense to me which is MAKING HER MORE MAD!! I'm trying to be as matter of fact as possible and I'm getting nowhere..and I can feel myself starting to get angry and now my voice is getting loud.. it's a recipe for disaster and I'm the one throwing in all the ingredients.

I am slowly realizing everyday things with my girl are real..Arguments and silent meltdowns are far and few between but they do happen. And I'm just starting to understand why..she processes things so differently, that I can't even comprehend sometimes..and my heart breaks thinking of all the times I became frustrated and yelled or shut her down because of our miscommunication.

The ride to school was tense..we got in the truck and she wanted to radio turned to 105.3 "The Shark" she usually does this herself but today she mumbled it under her breath so I could barely hear her, but I knew what she wanted. Every muscle in my body was tight..what an irritating way to start our day. And then I looked over and saw her face. She looked defeated and sad.. I know asking her whats wrong is useless and I know pulling over to hug her like I would do with Sarah would be unimaginable.

Instead we take our drive in silence and I pull up to the curb..she fumbles with her things as usual..I remind her to take the bus home and I will be there. I will not get a hug..I will not get an I love you..I get an emotionless "bye" and the door slams.

I fully expect my letter this afternoon firing me from my job as her mom.

Tuesday, January 7, 2014

Time to make the pancakes!!

I was surprised at the many different reactions and responses I got the few times I've mentioned making Morgan pancakes in the morning, So I thought I'd share WHY I make them everyday.

You might remember Morgan going to her friends house for a birthday sleepover and the mom made pancakes in the morning. They may have been homemade, fresh, frozen..I have no idea but Morgan thought it was the BEST thing ever!!  Now, I don't know if B's mom really makes her 3 kids pancakes everyday but for some reason Morgan got stuck on these pancakes.

Before the pancakes she ate nothing for breakfast and I hated the idea of her going to school with nothing in her system..I have tried everything but you all know you can lead a horse to water but can't make it drink..yup Morgan is the same way.

You may have not caught on in the above paragraph but I used the word STUCK..and that is exactly what happens in Morgan's mind..once she gets stuck on an idea..there is NO GETTING IT OUT!!  So we try to do the best we can to make her ideas happen, and this time it's just pancakes. So what.

I'm used to the advice and welcome ALL of it..I love hearing from everyone and how you do things with your kids...I really do!!  But I've also gotten used to the eye rolls or the comments about Morgan being a "little bit spoiled".. really?? Because I make her breakfast everyday?? Something she enjoys??

It's become part of her routine and if you live with Morgs you know how important those familiar things are and WHY we do them.  She doesn't switch gears easily. If I didn't have maple syrup or if I ran out of batter, would she survive??..of course she would.. But it doesn't end there..see she needs an explanation for's not as simple as I forgot to buy it, or we ran out have some oatmeal her mind there has to be an absolute reason for everything and it could go on FOR DAYS!!

We have routines to make it easier and our mornings are set by these 6:30 she gets up and gets dressed. By 7 I'm making the pancakes and if I'm not she is reminding me, calling up the stairs making sure I didn't forget and if I happen to be working that morning and running late SHE makes the pancakes.

We mix up just enough batter for two small pancakes and she has chocolate chips in between  (whatever you do DON"T bake them into the pancake!!!)  While she's eating I make her lunch...Imagine that.. I make her lunch too!! Basically for the same she knows what to expect and what her choices are going to be during the day and at's easier for her this way.

Just as any adult might look forward to their morning drive-thru coffee, she likes her pancakes!!

Cue the eye rolls...