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 disorder...an 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 system..it'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 heard..it'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 labs..it'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 EVERYTHING..it's not as simple as I forgot to buy it, or we ran out have some oatmeal instead...in 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 things..at 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 reason..so she knows what to expect and what her choices are going to be during the day and at lunch..it'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...




Tuesday, October 1, 2013

Dear Daughter....who doesn't listen

Dear daughter,

Today you are mad at me, but you brought this on yourself....You take me for a joke and I'm sick and tired of it. I've said it until you don't even hear me anymore and I warned you months ago this very thing would happen...maybe you thought I was bluffing...you have had plenty of chances and I've been much more than lenient...maybe that was the problem.

I know you are busy...you are good in school and you play an after school sport..I get it...you don't think I do..but I get it.

I do not make rules to be a "beast" I make rules so you will know how to act and succeed in life when you are older...there are rules in school..rules when you get a job..and rules in life...the consequences of breaking those rules are far worse than the ones I have here at home...

You continue to not follow the simple rules I am asking of you...no eating/drinking in the living room...leaving cups and water bottles in your room..not picking up your stuff...and the biggest one, leaving your clothes all over your floor.

You can plead that my room as a kid was a mess...you can tell me it's your room who cares...well guess what??? I CARE.

I bought those clothes and find it disrespectful to see them thrown on the floor... this is not the first time we have talked about this...this has been going on for months...your closet is big enough to easily fit everything you own....you have no excuse beside being lazy and not giving a rats ass what I have asked of you.

For the past month you have begged and pleaded for a few new things (clothing)..again your father and I both have repeatedly told you once you can keep the clothes in the closet and not on the floor, you would earn a trip to the mall.

Even though you did NOT do your part, I decided to cut you a break...I would give you one last chance and this past Sunday I surprised you with a trip to the mall..just you and me.

We started off at Dunkin Donuts for our favorite iced coffees and then stopped for lunch before we shopped. It was a fun day. I haven't had a Sunday off from work in over a month and decided I'd love to spend it with you..

The amount of money you were able to spend in 2 hours...takes me almost two 12 hour shifts to earn..


You got what you wanted, I was no longer the "beast" I was the day before...

It is not my fault you wait for weeks until you do your laundry..you have a set laundry day that YOU CHOOSE to ignore...you would rather wait until you have nothing to wear and then complain that other people are using the washer... that is YOUR CHOICE.

I told you the easiest way to complete the entire laundry task it to fold it right out of the dryer and then put it away..it's actually very simple...you assured me and promised I would not see the hundreds of dollars worth of clothes I'd just bought on your floor.

It's now obvious to me that you do not give a $h@t about what I say...ask...or do for you, because this is what I walked into this morning when I was going to vacuum YOUR room.


You claim you did your laundry last night and didn't have time to fold it and put it away.....Last night while I was at work, away from my family..working until all hours..and tired, I vaguely remember receiving a text saying how tired you were from having to stay up and finish your laundry and an English assignment...then if I remember correctly that same person standing next to my bed this morning asking for an extra hour of sleep because you were up late doing laundry and homework...and what did I do???? I LET YOU SLEEP IN and drove your ass into school late!!!!!

 I warned you this would happen....I told you I'd had enough...you chose not to listen to me and that is your own fault..NOT MINE....I work damn hard for those clothes you have and the things you do...I will not feel bad because there are rules in my house...I will not have guilt when you are mad at me...I am your mom and the rules I have in MY HOUSE are for a reason..I'm sorry if you don't like them...but chances are in your life you will encounter much harder rules, than just having to fold and put away your own clothes.
Don't bother looking for your clothes...don't worry, you will get them back.. 
when you decide how to earn them.

Love, Mom

Friday, September 20, 2013

Portrait of a thyroid disorder..just another day.

Having a thyroid disorder or in my case not having at thyroid at all, can feel like your lost in the ocean and all you can do is tread water. Your looking for the direction in which to go but even when you figure it out your to tired to get there. So you start to sink.

Today I feel like I'm sinking, maybe tomorrow I'll have the drive and energy to do what I was supposed to get done today.

The pants I wore last week are tight this morning..maybe they will fit tomorrow....my coordination is off...my head is foggy and I'm anxious...I know what this is from..

I wander around my house aimlessly after the girls go to school...I am getting nothing done..I go back and fourth in my head about what I should be doing...I decide to head out for some retail therapy. I need so many things to decorate our new room in the basement and I plan on giving my bathroom a complete overhaul pretty soon. I stop for an iced coffee and hit the road.

I enter the store and grab a cart..it's hard to push and as usual I get the one with the shakey squeaky wheels...I find a few things but nothing I really want and there is lady in my isle that is in my way...I'm aggravated and immediately don't want to be there anymore..I push through the isles because thats what I came for but things are a blur..nothing matches..nothing will look good in my house and nothing feels like it is making sense..

I suddenly feel lost..why was I there again..I need a shower curtain, yes! I head over to the bathroom section and see all the curtains and love them all...I can't choose so I decide to look at the towels, pick a color and go from there....to many towels back to the shower curtains..I narrow it down and make a decision. I go back to the towels and suddenly I hate the colors..I take the shower curtain back and grab another..I hate this one too...I guess my bathroom can wait till another day.

I feel weird and out of place..uncomfortable in my skin and just need to get the hell out of there...I feel like I can't get to the door fast enough...I head home.

 I'm starving...when was the last time I ate something?? What should I have for lunch?? I get home and nothing is appealing...For once I'd love to eat and not feel guilty because my body looks like shit...I need to try harder.

I should be at the gym..I should be working out..It's one of those days and I know going to the gym would be useless...it's days like this I have no stamina and I feel out of control..I settle for yard work but have not made it outside yet..

Maybe a diet coke would make me feel better....I wish I could just make myself feel better..I hate days like this...it's a sucky feeling that not many understand..my husband gets irritated and my kids don't understand why I cannot possibly do one more thing or answer one more question...or why something like the volume of the TV has made me snap.

Am I depressed??? Am I working to many hours??? To many after school activities for the girls??? Give yourself a break people say...If I gave myself a break every time I had one of these days..I'd have no life..It's my medication and I know it...I call the doc and they will see me in 3 weeks..."sorry but you will have to live in hell till then, have a nice day!" Great...

You feel the lump in your throat and the tears are blurring your vision...you tell yourself to suck it up and stop the pity party...

This is your life now...you are no longer who you were before...deal with it!!  Somedays that is just a hard pill to swallow...more jagged than the little blue one that I take to keep me alive..



Monday, June 10, 2013

The great grocery experiment....

Probably like a lot of mom's, I do most of if not all the grocery shopping..there are times John comes with me but I never bring my kids. Brining my kids works me into a lather. I'm usually flustered to the point I can't remember anything and the backs of my ankles are almost always bruised from being rammed into with the cart..and, I spend twice as much if they are with me.

Just after the new year I decided to take a break from my job and cut down my hours..this would be the first time in years I didn't have a regular income coming into the house to help. I knew it would be hard, I'd have to get creative and cut some corners..a small price to pay for my sanity.

But it seems like every week I hear the same thing.."there's nothing to eat"..."wheres all the food".."I don't like that"...I've tried all sorts of things like letting them each pick a night and I make the meal of their choice... letting them give me a list of things they would like....I try to spend around $150 weekly and that usually doesn't include many meats, I buy those at a butcher. I am getting sick and tired of my fridge and cabinets going from packed to bare in 3 days..

John and I have brain stormed a million times about how to get through to them...I want them to realize I could be making them fill up water bottles from the tap..instead of buying their fancy school drinks..that shits not cheap, and when you have two kids with friends and they are sucking them down that gets expensive!!...Still, they look at me like I'm just this nagging mother who will bitch and then just continue to go and buy the stuff they want anyway..and you know what....I do.

I bitch..they ignore me..I go do it all over agin the very next week...OMG I have spoiled bratty kids!!

The girls are now 15 & 11..they are to young for real jobs (most places here you have to be 16 or older) so they really don't have a clue how long it takes to make $150. They don't realize how hard we work to make that money.

When I asked them if they thought $150 was a lot of money they both thought it was...So where's all the food you buy with it??? I wanted them to see exactly how much things cost and what it was like to follow a budget...I announced that they would do the grocery shopping!!

They both looked at me like "yeah right" I'm pretty sure they thought this was just another bitchy moment and it would pass..I have to admit I don't always follow through and bringing them to do the shopping was already sounding like a disaster...I told them to come up with a menu, figure out what they would need and write a list..

Today is Monday..my grocery day..I told myself if I wanted them to learn..I HAD to do this...The teen weaseled her way out of it, she had to study for finals..I cannot say no to studying..and taking just one would be a little easier..so it was Morgan and I...When I picked her up from school, she was thrilled about going..she had her menu planned and knew what she might need..

We get into the grocery store and the kid is clueless...I decided I just couldn't let her run wild and buy anything she wanted..I gave her the $150 budget and reminded her that we have to buy for everyone in the house, not just her. We also needed toilet paper, sandwich bags and a big bag of cat food..that all had to be included in the budget..she assured me $150 was a TON and she could get everything we needed...ok this was going to be good.

She had her list..her calculator and we were good to go....by isle 3, I saw the total creeping up and reminded her we still had whole store to go and we hadn't gotten anything for her recipes..She had decided on corn chowder...chicken pot pie..and meat cakes (mini meat loaf) She was surprised to see what her usual snacks cost and quickly realized that the Store brand 2/$3.00 was the best deal...if she couldn't get the deal, she didn't buy it...she was careful to choose things everyone liked and she chose things that were even amounts so she and Sarah could split it evenly...

I wasn't sure if this was good or bad..I thought for sure she would get to the snack isle and that would be it...she was passing by things she loved..I was actually TRYING to get her to buy junk..."what a rip off" she was saying..."I won't have enough money to buy things for dinner"...                                          

What the fuck was happening!!!

The kid who can't walk and chew gum and obviously couldn't push the cart and use the calculator was telling ME that the bigger pack of hamburg for her meat cakes was a better buy and I could use the left over for something else...

There was still one snack isle and we hadn't hit the produce yet, which is her favorite...I was almost becoming determined to prove her wrong..I wanted her to have to put something back..make a big decision ..chips or carrots..and when we run out of food and are eating chips and cereal for dinner I could say "I told you so"....I watched her cruise through the isles carefully choosing what she wanted..

We get to the produce which was the last leg..I was not looking at the calculator..I thought for sure she was probably over the limit...she got the rest of what she needed and said she was done...we headed to the check out..past the bakery with the cookies she loves and she didn't even give them a second glance..

As I was loading the items up onto the checkout I was excited for her...I knew she had done her best to make sure she got what she thought was important and I was proud of her for that...

I watched as the girl scanned each thing and when she hit total I was in shock..$152.88!! I told her I was pleased and asked her if she was too..."yes, this was fun and next time I'm clipping coupons!!"


I don't know if will have bare cabinets by Thursday...I don't know if we will be eating captain crunch for dinner one night...but what I do know is, my kid was capable of pulling this off...When they are complaining and eating an complaining and eating they are just being kids...I realized today they are listening deep down inside...Today wasn't just a lesson for Morgan..it taught me something too...even when you think your doing a bad job and your at your wits end with your kids...they are watching and listening to you..Today Morgan taught me I'm not doing such a bad job after all.