Thursday, April 17, 2014

Words get in the way

"You are beautiful, no matter what they say..."  I have been repeating this to myself all day long.  I have a habit of letting other's words get in my way.



It's not just about beauty or physical appearance, it's everything - how you parent, what you eat, what you drive, who you talk to - literally e.v.e.r.y.t.h.i.n.g. no matter how old, accomplished or important you are.  Donate a million dollars to charity?  Our society will pick apart where your money came from, who you donated it to and what you wore while doing it.  Everything down to the last little stubble of hair on your not well shaved enough legs.

We live in time when people are so quick to judge, so quick to criticize, so quick to jump to the conclusions. Maybe this is how it's always been, I haven't been around forever so I really can't answer that.  I can only say what I know and as an adult who is constantly under the microscope - I can say I see it way more than I ever could have anticipated.

I want to be able to tell my 11 year old daughter that the judging and criticizing  - and honestly bullying - from other people goes away when you are an adult, especially since I actually believed that at one point. And then, I realized accepted that it doesn't go away, it's just done differently.

So many people seem to thrive on building self doubt in others. I've heard and  (meh) somewhat believe that people who try to make you doubt yourself do so to make up for their own insecurities.  Possible.  And sometimes that makes me feel better but the bigger question of "why?" always lingers.  Do you really feel better by making someone feel worse? Maybe it's true and some do, I simply can't understand that. More importantly, that doesn't make it ok.  Not even a little bit.

When I think of my beautiful Allison and what she goes through, the most common thing I hear from others is "It's Middle School", because apparently that is an acceptable reason to be a judgmental rude bully. Everyone says "You remember, Middle School was the worst, always has been."  Ok and yes, I remember.  And no, I wasn't always nice either. As an adult, I can't help but think... maybe the people who still behave this way as adults never changed their ways because it was accepted as "normal middle school" and later "normal high school" behavior.  Maybe it's time we change what "normal" behavior is at a younger age.  Instead of letting this be ok, actually teaching the importance of building people around you up.

I mean, really, "it's normal middle school/high school" behavior isn't a solution - it's an excuse.  An excuse without consequence that teaches "acceptable" life long behavior in many.  What frustrates me most is the "solution" that is offered is for the people picked on to "have thicker skin" - because clearly changing sensitivity for hardness is an awesome idea.  It's always wiser to change the person who is hurt by the words than the change the attitude of the person saying them, right?. (*brilliant*)  (yes, that was sarcasm)

The struggles Allison and I face with other people's words that bring us down are sometimes similar (weight, hair, clothes, likes, dislikes...) and as an adult a new layer is piled on... parenting.

I'll admit, I like to hide myself in the bubble that surrounds my house and block out the rest of the world on a pretty regular basis.  It's easier.  I get more accomplished.  I feel better about myself because I'm subjected to less criticism and it's easy to block out people on Social Media who are full of negativity. I have no problem living this way.  It's probably part of the reason the 3 of us have so much fun together.

I am, also, a very social person.  I love to be around and meet new people.  This typically requires me to leave my bubble and when I do, I'm reminded of the added layer that Allison gets to look forward to if we can't change people's way of treating each other - this insane acceptance that it's perfectly ok to criticize everything about other people.  Seriously, enough already.  Just stop.  I'd rather hear 5 hours of stories on how your child finally pooped in the potty over 1 minute of your ripping apart every common person we know for situations that you honestly don't know the entire story on.

I've often said I feel at an advantage because I am a special needs mom.  I see the world differently, I've seen the harshness but I've also seen the most amazing and beautiful things - the stepping stones, that other people take for granted.  I have a deep appreciation for what is often overlooked.   It also stops me from believing I understand what someone else is going through and how I could parent their child better. That... that is what I'm struggling with today.  Those are the words that are in my way, blocking my focus and filling me with self doubt.  Someone else pointing out to others all the ways they could better parent my children.

Here is something brutally honest.  I have no idea what is like to raise your children.  I have no idea what their wants, needs or likes are.  I have no idea what makes them happy, sad, overwhelmed... nothing.  I know nothing about places you've been, things you've tried, or what is on your bucket list - or if you even have one.  I don't know your finances, I don't know your fears, I don't know your dreams.  I don't know.  I don't walk in your family's shoes.  I walk in mine.

So to venture out of my bubble and be approached by I'm sure well intended friends to tell me that person V thinks I'm not doing enough for my kids - with a list of examples of everything we should be doing so they have a "well rounded childhood" (<---- what is that anyway?!?) kinda sticks with me, even though I should get thicker skin and let it roll off.  Here's the thing, person V barely knows my children, barely knows our life and certainly does not understand Fragile X or the challenges we face.  Here's what's worse - when I let their words get in my way, I do things that are actually detrimental to my children. Not in major ways but in small, I knew better, ways.

Best example - Disney.  I was convinced by others that my children were not living a full childhood if they had not been to Disney.  So... we went.  And while Allison did alright with it, it wasn't the most awesome, magical experience - it didn't hold a candle to camping with Grandma... and for Parker it was a sensory overload nightmare.  A nightmare that lasted a good couple of hours before I tearfully apologized for putting him in a situation that went against anything he would ever like and took him back to the hotel.  Back to the hotel where it took me hours to decompress him and get him out of the state of hyperarousal.  When I think of what I could have done for Parker and Allison with the amount of money I spent at Disney giving them an experience and memories they would honestly love to remember... I can only hang my head in shame for falling prey to letting other's words get in my way.

I often reach out to others for ideas and advice. I  am constantly learning about Fragile X, constantly following research, constantly watching every move of my children to not only understand their worlds better but also to watch for opportunity.  I believe in trying more than once, I believe in pushing them, I believe in trying new things.  But, I need you to trust me that I know them better than anyone.  I know some situations simply are not something they will enjoy.  Some things, are simply not meant for them - or us. And you know what?  That's not exclusive to special needs families - it's every family.  We are all so individual - that needs to be respected.

The same things are true regarding my hair, my weight, my house, the vehicle I drive, the animals I raise... every aspect of my life.  It's my life. Life is more than filled with a million demons.  Don't be one more, don't fuel a fire that you don't understand how it started.

If you need my help, I trust you will ask me. If I need your help, I promise I will ask you. I am always happy to help, share our experience and help you find solutions that may work for your family.  I'm not in a place to judge anyone.  I haven't walked your path, only mine. I'm here to support you, help you and... build you up.  Build. You. Up. - and then step back, filled with pride and watch you shine.  Because you can - shine - we all can, sometimes it just takes hearing it enough or a point in the right direction to make it happen.

I love suggestions, I love hearing what works for others, I love the empowerment and passing on Hope and excitement to others. I love to surround myself with these people from near and far.  I pray I can teach my children to find helpful, encouraging people to surround themselves with too.  To understand everyone has a battle, most often one you cannot see and would never imagine possible for that person. Of all of the contagious things we could spread in this world, one of the very best is something positive.

Being negative, being critical, being degrading... easy.  Anyone can do it and many do.  Being positive, encouraging, uplifting, hopeful - not just in your own life but also in the lives of those around you - that is much harder because it goes against the grain... it also makes the biggest difference.  It really, really does.

Don't let your words get in someone else's way.  Find the words that inspire. Find the words that empower. Find the words that build up.  And then use them.  Everyday.

Please. 

And, if you are like me and let others words get in your way ~ remember you are beautiful in every single way.  Surround yourself with those who can remind you of that.  Thank you to those in my life who always do that for me... you know who you are ... I love you dearly.




Monday, April 14, 2014

Laser beams, bottoms and blessings.. are you lucky & blessed?

I've not been overly open about it but I've not hidden the fact either that I'm in the process of writing a book.  A book that should be done by now but I tend to put just about everything else in front of writing (also obvious by my lack of blogging) - anyway, it's in process.

There are some things I worry about sharing or writing about, after all Parker is in high school now and many of his peers are my friends on the different social media platforms I am on.  There are some things I worry if I share, it is giving them or others in his school reason to bully him, make fun of him, or just be jerks to him.  Annnnd protecting Parker (and Allison) is one of the things that I want to do most in life.  Yes, I want to raise them to be independent, caring, compassionate, happy, productive members of society - I do.  I also want to be sure that I protect them as much as possible.  And I have to, especially Parker, as he cannot protect himself and that worries me. Every. Single. Day.  Then I remember that the peers of Parker's who are "my" friends on social media, are there because they are Parker's friends.  Yes, friends.  They care about him, they encourage him, they stand up for him - they even... protect him.  It's these "Aha" moments that help me reach out more openly to the thousands of parents and caregivers who need to hear what we go through each day too, who walk in our shoes.

So, tonight, for you... I write.

Ok, and because sometimes nights like tonight lead to thoughts I want to share and sometimes people are annoyed when I write several paragraphs as a Facebook status.  (Insert huge grin here)

So here's a fun writing fact:  The majority of the things that get scribbled into my notebook to be written about come to mind when I'm helping Parker in the bathroom. Yes, as I wipe his bum. Seriously, this is when "things I want to write about" pop into my mind.  Kinda better than thinking about the obvious in front of me. You see though, not every mom is lucky enough to still get to help her son wipe his almost 15 year old bottom but I am.  Lucky that is.  No, really, I am lucky and blessed.  Interestingly, that's something many people miss.

Frequently I am asked off the wall questions, honestly, I'm so used to it that not many phase me anymore.  Some make me laugh, some I anticipate and others... well, those take me so off guard that I'm sometimes left a bit stunned.  Especially when asked in person.  I can't hide my emotions well, what I'm thinking is clearly written out in my facial expressions.  While I always want to be helpful and educate, I have these "laser beam eyes" that I haven't yet learned to control.  (*Disclaimer, I do not at all feel bad about that, it takes time to learn how to harness and appropriately use your superpowers.)  and sometimes people have trouble seeing past them to hear what I say.  Those moments stay with me and I feel it's important to share my message, just in case instead of hearing the helpful message I said you were left focused on my eyes and wanting to curl up in a corner in the fetal position.  (*Disclaimer two, being told that by someone who is now a friend still makes me laugh and not at all feel bad for giving the laser beam eyes look in that instance.) 

I know, you are waiting to hear what this is actually about - here you go... A couple of months ago, during a time I was beyond my normal excessively busy self working through extreme excessively busyness I ran into a friend at the store.  A really great mom with a son the same age as Parker, who I've known since Parker was in early elementary school.  We stopped in the ketchup isle and spent a few minutes catching up.  She mentioned how her son was in Driver's Education this semester and I commented that it just blows me away that our kids are old enough to be in  Driver's Ed.  (They are only 14!!!  I find this frightening!)  She asked, genuinely, "Will Parker be taking Driver's Ed?"  I can only imagine what went through her mind as she asked this question out loud - having known Parker since at least 2nd grade, I'm pretty sure she was praying and chanting in her head "Dear God please say NO".  While I appreciated her thinking he would be included enough in school to take this class, I had to laugh as I said, "Oh gracious no!  Can you imagine?!?  This is one of those times I'm very thankful Parker does have special needs.  I can't even begin to imagine the stress of my child driving.  I feel for you!!" It was then when she said so innocently that question that took me from happy smiling friend to trying to fake a smile and control my laser eyes friend "Does it ever bother you that Parker isn't just like the others?"  Huh?  What?  "just like the others" While my eyes shot laser beams my mind slowly processed what I had been asked (yes, sometimes my brain does slow down a little) "Does it bother me that Parker isn't just like the others? Think positive, she included him with "the others" so she does see him as a part of their group of friends... think....nicely...."  I'll be honest I didn't even realize I was shooting laser beams yet, I know I tilted my head with a look of confusion and paused (that alone may have frightened her, I rarely pause) because she quickly followed it up with "You know, does it bother you that your life is so different than ours, do you feel like you are missing out?"  At that moment, I was fully aware that the laser beams were on full blast.  Ugh. I need to learn to hide them better, the smile isn't enough to cover it.  I knew she meant well.  I always say "you can ask me anything" and I do mean it.  It was a valid question.  It was just kind of painful too.

What I replied to her was important but I'm not sure she could take the focus off my piercing eyes to hear what I said.  I said, "Sometimes, it hits me - the reminders that he's not doing the same things as all of his peers.  He's not in drivers ed. He's not on the same sports teams.  He's not dating.  He's not doing a lot of the things that many people associate with fun and greatness in high school.  Those things are easy to forget though too as our lives are very busy with Special Olympics and other interests.  And, honestly, even if he was "typical" I don't know that any of those things would interest him.  I don't see my life as "different" from yours in the sense of I have it harder or even different.  We all have our struggles.  I'm sure your son has his too.  I doubt they are easier just because he is "typical".  This is my life, we have fun every single day.  That's more than some can say and for that, I am Thankful and Blessed."  She smiled that "I have pity for you" smile instead of the "I believe you" smile and we parted ways.  

It's these conversations that cross my mind when I'm helping Parker in the bathroom.  The ones that point out that he's not "just like the others", the looks of pity and the smile of "Thank God it's you and not me".  These are the moments I realize people don't realize how lucky I am.  They really don't.  I try to share some and offer insight into our days to help people see but what I realize is that some people can't see, not because I'm not making our lives available for them and not even because I tend to shoot laser beams their direction but because they don't want to. And I'm not sure why.  Maybe it's fear.  Fear that understanding and acceptance of our lives would lead to this happening to them. Honestly, you don't know what the next minute of life holds.  Everyone is one accident away from a disability.  While not through genetics like in our life but through a freak accident tomorrow they could be wiping the bottom of their almost 15 year old son.  Maybe that fear of acceptance keeps them from seeing that our life... isn't so bad.  Is it different?  Yes.  Is it challenging?  Sometimes.  Is it bad? Oh gracious no.  Do I worry about the future?  Every single day but so do they.  Just like every day they have good, bad, different and challenging.  Everyone is different but we all face the same good/bad/different/challenging types of experiences that are personal to our own lives every single day.  For whatever reason, that is easily overlooked.

Annnnnnnnnd here is a little secret - our life is actually pretty dang fun most of the time.  Don't get me wrong, meltdowns happen and they suck.  Parker is way bigger than me and could easily hurt me.  His anxiety is a challenge to harness since the end of the STX209 medication.  But, we roll with each day and learn something new.  For the most part, things go smoothly and we live each day to the fullest.  We may not get to experience vacations and places that others do but we are very capable of living life to the fullest possible for us each day regardless of where we are or what we are doing.

Tonight was no exception.  It's the 14th of April and Parker and I were given a gift that I never would have expected after our 80 degree weekend.  Today, after school - it snowed!  And, while Allison claimed to not be thrilled, she was the first to stick out her tongue and try to catch snowflakes after volleyball practice :-)


In true huge snowflake falling tradition, I turned on the Keurig maker to make some Dunkin's Hot chocolate which wouldn't be complete without a spoonful of Cool Whip.  Now, neither of my kids like hot chocolate or cool whip but I do and we were all super giddy because of the snow.  Parker, like normal, was glued to my hip walking through every move with me.  When I had the spoonful of Cool Whip in my hand I looked his way with a grin, reading my mind he said, "Oh no you don't!" and took off running.  I chased him through the house until he was cornered then smothered the spoonful of Cool Whip across his face.  We laughed uncontrollably and I left him to wipe it off as I started supper.  He came back to the kitchen a few minutes later grinning ear to ear and I knew exactly what he was up to.  Without hesitation, he grabbed the spoon and in one swift movement scooped up a glob of Cool Whip and was headed to me.  Turning my head while cooking, it ended up across the side of my head in my hair... and on the floor.  As we laughed he warned me as I took the spoon "Not to do it" or "he'd call Grandpa".  I did it anyway.  Covered in Cool Whip, we laughed so hard time stood still as we took kitchen towels and cleaned up... and called Allison upstairs for "Supper" or Cool Whip in the face, you know, whatever!  We are, in many ways, just like other houses.  We have fun, we get crazy and yes, Parker calls Grandpa to tell on me.  We may have been a little more wound tonight than normal and it may have been my fault for starting a Cool Whip fight but I wouldn't do it differently for anything.  

Here is where I believe our life is different though.  Just a couple weeks shy of his 15th birthday, Parker wouldn't dream of going to bed without me tucking him in, blowing a fart kiss on my cheek, hugging me tightly then pretending to fart so I'll leave his room.  He watches TV until he can't stay awake any longer, yell for me to cover him up one more time and then after a few minutes I hear it yelled from his room... "I love you."  The very last thing he says (yells) from his room to me every single night.  "I love you."  Words I waited 10 years to hear.  Words not every 15 year old would willingly tell his mom, words that remind me that even when I screw up there's still hope for me... "I love you." 

And this is how I know I am blessed.  Even before he could verbally say it, I could see it in his eyes, I could tell it by his actions - he loves me unconditionally and is always willing to show it and let me know.  When most 14 - 15 year olds are telling their parents how much they suck, mine says I love you... every single day.  No guessing.  No worrying.  Clear and simple, I am loved. I am one of the lucky ones who doesn't have to guess.  I know.  I am blessed.

There was a time early in the diagnosis that I was easily frustrated by the challenges in Parker's life, these days - it takes a lot, seriously a lot to frustrate me. There are still days when I see one of his friends driving and get a little emotional knowing what he is missing and days when I see them and thank God he's not behind the wheel of a vehicle driving.  There are times mid meltdown when I fear the unknown and even more times when a simple look or hug can stop a meltdown before it starts and I find peace within us both.  And every single day I fear what will happen to him when I am no longer here and do all I can each day to build memories, skills, confidence, independence and a circle of friends so I know he's never alone and always loved.  

Most of all, each day I remember we are blessed and lucky to have each other - all 3 of us.  It's the little things that mean so much and go so far.  The bath crayon messages on the tub walls of love and humor.  The notes in Allison's lunch box. The unexpected Cool Whip fight...  The laughter.  The hugs.  The constant reminders of how much love there is between the 3 of us.  They are my heart and soul and I am, without a doubt, the luckiest mom in the world - even when I'm wiping that almost 15 year old bottom.



Wednesday, February 26, 2014

The Advocacy Connection

Sometimes, it's all about the timing.

Most evenings, Allison's homework leaves me feeling drained (and quite honestly ready for a glass of wine!) but the other night after we finished studying for her history test on the legislative branches my face lit up with excitement.

"Allison", I said, "Do you know that every single word that is said on the floor of the House and Senate is recorded and printed into a book every single day?"

She looked unimpressed but slightly interested.

"Did you know that your name is in one of those books?"

Now I had her attention and our incredible discussion over the work I do, along with many other Fragile X Advocates, each year came to life. For the first time ever, she was really interested in the advocacy portion of the work that I do.

I have been debating taking Allison with me to DC for a couple of years now to advocate for herself and her brother along side of me but I just wasn't sure she was ready.  To see her excitement about what she was learning and how it directly weaves into our lives lets me know now she is.  I hope next year she can come with me but for now I gave her something incredibly special to me to take to school to share.



Yes... a copy of the Congressional Record from Wednesday, July 21st, 2010.


You see there is something very special about this Congressional Record, it starts with this piece by the wonderful Representative Gregg Harper from Mississippi ... "It is my hope that, one day, we will see a time when all families suffering from the effects of fragile X will be helped so that they, too, will have the chance to move on and to enjoy the next phases of their lives..."


and continues onto the next page with this... (Do see how the 3rd paragraph from former Representative, my incredible friend, Phil Hare from Illinois ends?)  "... and we continue to make finding a cure for fragile x syndrome a national priority." That gives me chills each time and makes me smile.

But it's something about the middle that really stood out to Allison...look a little closer...


Do you see it?  In the 3rd paragraph? There is it, in print, in a Congressional Record... her name! But not just her name, it's her name in the statement as a reason why Congressman Hare was inspired to do something and get involved.  

This caught her attention and she beamed with pride. I talked with her about what it's like to be on the House floor, the Congressional Briefings I have spoke at and the incredible people I have met in DC.  I used a couple of sticky notes to mark the start by Congressman Harper and also to point out where Allison's name was mentioned and then handed it to Allison to take to school to show her teachers.
She was beaming with pride as I dropped her off from school and again when I picked her up and she told me how cool her teachers thought this was.  She asked if she could bring it back as not everyone was able to see it.  I just smiled and told her "of course!" and let her know this copy was hers to share.  To see her excitement really melted my heart.

To re-read the words by former Congressman Hare though may be words other advocates need to read too.  Timing, my friends, timing.  One week from today over 150 Fragile X Advocates will be on Capitol Hill for the National Fragile X Foundation's annual Advocacy Day.  And while I have said repeatedly how empowering and important this is, re-reading the word's Phil Hare spoke on the House floor may be exactly what other advocates need to hear as we prepare to go back to DC.

Look again at this section...

"Madam Speaker, I first learned of the fragile x syndrome as I was leaving the floor and was walking back to my congressional office. I looked at my schedule, and I saw I had a group of constituents who wanted to talk to me about fragile X. I had no idea what fragile x was. On the way to my office, I kept trying to think what could this be?
I had the opportunity to meet Holly Roos and other parents. Holly told me about her son and her daughter's battle with fragile X. The family shared stories and photos and it motivated me to get involved.  I started by participating in my first fragile X walk in Canton, Illinois 3 years ago. Three walks later, I am as committed today as I was then to work to find a cure.
Because of Holly, Parker, Allison and all of the people affected by fragile X. I was inspired.... "

Those are the words of a Congressman who's life was changed from a single visit to his office.  It took one meeting, one opportunity to tell our story to make a difference and inspire him to get involved and become a champion for our cause.

I understand how intimidating it is to go to DC. I understand the sacrifice of leaving your family, job and life to make this trip and the financial commitment involved to get there. I've been doing it for many, many years.  I do understand.  I also understand that only you can tell your story with heart and compassion.  Only you can make that difference. Only you can inspire someone with your story. I will continue to tell mine, I hope you will join me in telling yours and inspiring the current members of Congress.

The future of our children depends on our actions of today.  I know it's scary and intimidating the first time you go.  I also know how empowering it is to know you are making a difference.  And we are making a difference.

The proof  is forever a part of history in the Congressional Records. We have come a long way and while there is still a long way to go, we will get there.  Together, telling our stories, sharing our pictures we will continue to inspire..."and we continue to make finding a cure for fragile x syndrome a national priority".

I love that my daughter is learning about our legislative branches.  I love even more that I can give her our very own piece of history to make the learning process more meaningful. I love knowing that in the future, I can bring her with me to DC and we can stand side by side to tell our story.

I also love knowing our advocacy journey is going to continue to move forward and be forever documented as part of history while we improve the future.




It's all about the timing... one more week I'll be standing on these steps again - and I won't be alone.  I'll be surrounded by amazing fragile x advocates from all over the United States as we come together to advocate for everyone affected by a Fragile X Disorder.  Safe travels my friends... I'll see you next week!

Friday, January 24, 2014

Freshman IEP ... and Miss Chevonne

Parker has been in Special Education since he was 3 years old and qualified for services through the school because of his Fragile X diagnosis. 11 years and countless meetings and IEP's later we had our first one at the high school this past week.

For those not familiar with the special education world, an IEP is an Individualized Education Plan.  A plan written by the child's team which includes the parents, therapists, teachers, support staff, special ed coordinator and honestly whoever else gets tossed into the mix.  Parker has always had a very large team... it does take a village. Together we write goals for Parker for every area, along with how to measure them.

IEP meetings are always emotionally draining for me, even when they are good.  It's a combination of many things: The mental process to prepare myself for any unexpected difficulties/disagreements, possibility of educating anyone new on the team of the past 11 years and to hear the reality of Parker's life.  When you have a child with a disability you, or at least I with Parker, never get to hear "Parker's doing exactly what his peers are" instead I get to hear things like how my 14 year old son has the expressive language of a 6 year old (*I'm extremely thankful for his 6 year old language ability*)  and set goals for my almost 6 foot tall 14 year old to meet that is what his peers did in first grade.  While it's reality and I'm very aware of it, it's not the focus of who Parker is day to day for me.

We've always been extremely blessed to have incredible teams for Parker.  While we've went through some rough years and I was forced to learn everything I could regarding Special Education Law to best advocate for my son it wasn't the actual team members I was going up against.  It was a higher authority, budgets, administration, typical parents... sigh.  We've had so many battles... so many battles. But his team... his team has always been the most amazing individuals, dedicated, determined, compassionate and - like me -passionate and full of belief in Parker.  Which means we have also had so many successes... SOOOO many successes!

You would think that by now I would not cry at every meeting - yet, for both Parker and Allison - I do. I just can't help it. I sit in on many IEP's throughout the year for other families, I never cry at them. I am a rather good advocate for both mine and others. I know the law, our rights, Fragile X and my children. Don't get me wrong, I can cry and fight at the same time... I'd just rather not have to do either. When it's your own child  it's a very different experience than advocating for someone else's and no matter how great things are going I constantly have the anxiety of waiting for that other shoe to drop and the bottom to fall out.

The hour before each IEP has been the same for many years. I either bake or pick up some delicious treat for the team to munch on during the meeting (food always makes everyone happy and brings people together plus they do these meetings back to back to back to back... they do deserve something yummy while working) and while I make the short drive to school I listen to Simple Plan's Shut Up very loudly in my mini van (I'm that cool) on repeat until I have found that place deep inside me where my confidence resides.  Then, I confidently step out of my van, gather my treats and start crying as I walk into the building. This week I decided to switch up the music a little as I was most determined not to cry. I went with a Phillip Phillips song to loop (I really like to loop songs) ... Home.  It was amazing... I instantly broke into tears while still in the van - sigh.  Yet I found such comfort in the words - it's hard to explain.  I pulled it together before I walked into the school.

Prior to his meeting many of us stood in the hallway talking eventually we went inside, took our seats and started with introductions. Many, many years ago we set the tone that every meeting would start with something good about Parker.  It's hard to stay positive when the first thing that comes out of someone's mouth is "You're 14 year old functions at the level of a 6 year old..." or "We have had 127 behaviors this week..." meetings need to start on a positive note, even during the most difficult of times. This meeting was no exception each person started with a positive.

We began with Mrs. Pierce, the regular ed art teacher who has Parker for Art 1.  I relax a little as I hear the kind words she has to say about how Parker has surprised and impressed her with how well he has done, how much she enjoys having him in class... she was clearly beaming with pride as she talked of his accomplishments.  I felt relief as I wasn't sure he would like art but was glad to see that she could see in him that he does.  She gave significant credit to Mrs. Wildebour, the para (one on one aide) who is with Parker in art and modifies all of his work, complimenting her ability to modify the work for Parker, involve him and push him to really be his best.  We discussed electives for next year and my heart sank a little knowing that Mrs. Pierce wouldn't be the art teacher unless we repeated Art 1 but took comfort in her confidence that he would like the new teacher.

We continued around the room, the Autism consultant and SLP both talked sharing wonderful stories and updates while making recommendations for the upcoming year.  I, in typical Holly fashion, disagreed with Parker's language evaluations knowing he does not test well and what his strengths have always been.  The offer to repeat them was made but I know it is pointless and do not believe in wasting anyone's time so I declined the offer to retest.

Typically in high school the kids come with to their IEPs to become self advocates.  While, by law, I was fine with Parker's name being on the invitation I was amendment that he would not attend. I had talked it over with his dad and we both agreed, knowing Parker very well, that it would ruin everyone's day and the meeting would be rescheduled without anything accomplished. We documented this and set it for a goal for Parker to one day attend.  We discussed briefly Parker's long term plan... will he continue on with school (high school) until he's 21 or will he leave after graduation and do something else.  The reality is - we have no way to know.  We have no way to know what opportunities will present themselves to Parker over the next few years and what he will want when that day comes.  What we know today is that he will walk with his class at graduation. Beyond that, it's too soon to tell and if you ask Parker right now he will tell you he doesn't want to get a job or move out.  He wants to stay home with his mom ... for now, I'm good with that.(I didn't want to work or leave home at 14 either!)  We were clear that our expectations for Parker is to become as independent as possible.  We want him to make that natural transition of moving out when the time is right into an appropriate setting.  It is important to me that Parker learns how to be ok without depending on me while I am still here and can help with that transition as opposed to after I am gone and he is forced to do it without my support. I won't live forever and need to know he's ok before that time comes.

We continued on with Mrs. Vohland, who serves not only as Parker's teacher for many classes but also as his case manager.  She talked of his strengths and greatly complimented Mrs. Horton, Parker's other para who was also in attendance, for the incredible work she does with Parker each day and for the reason we see such success in Parker. They both shared great strides he has made in every area and we talked at length about the huge improvements in his behavior.  Parker is participating in all of his classes, visiting with friends in the hall, he is - in so many ways a typical freshman just like his friends.  We discussed letting him go off campus with assistance for lunch when the weather warms up and increased his goals both academically and for self-help/personal care/independence.

This meeting was going really exceptionally well.  There was only one person left to talk, Miss Chevonne, our OT.  Chevonne has been Parker's OT since he was in 1st grade.  She has, honestly, seen it all with him over the past several years.  She has become a person of trust for me, someone I know I can go to for true advice - she is a tell it how it is type of woman.  She gets everything about Parker, his humor, his soft spots, his frustration. When discussing why he doesn't like working with clay earlier in the meeting she said, "What you have to understand is it's more than the physical touching of it, it actually hurts him on the inside there is so much of an aversion and anxiety with it." and backed me when I said we would not push this and make him work with clay.  She gets him.  Unfortunately that doesn't mean Parker loves OT.  He's had many amazing OTA's working with him with Chevonne's watch over the years - he put his foot down early, he wasn't having anything to do with it.

His refusal to do OT has led to many things, including it being encouraged more than once (and by many) that I take out of Parker's IEP goals that he will learn to write his name.   He couldn't make a single legible letter, he had a Popsicle "P" (a line with a sloppy circle on the top) that was his "signature".  Parker is incredible on the computer and technology has come so far "He doesn't really need to be able to write his name" ... I've been told by so many.  But, to me... his mom.. he does.  I don't know that I can explain it.  Pride, accomplishment... there is something about being able to write your own name that was important to me and I refused to take it out of his IEP.  I honestly did not care if he could write any other letter of the alphabet, I just wanted him to be able to write "Parker" and made sure it stayed as a goal.

Despite incredible efforts, Parker had not made progress in OT for a very long time.  We all knew that Chevonne and her team had done all they could.  Last year I agreed that Chevonne would work with Parker for the first half of the school year, we would meet in January and then she would step off his team and we would move forward without the OT goals.  Now, if you know me at all, you know I will agree to something like this to end a meeting knowing that I can still fight tooth and nail for it to be kept in so there was that in my back pocket but as we ended 8th grade my heart knew if he hadn't made progress we needed to focus on areas that were more important.  While part of me let go of the hope that he would one day write his name and accept that it might not happen, a little part of me held on tight to the hope he would do it and prove everyone wrong one day.

The only word I can think to describe the first half of Parker's freshman year at Canton High School is transformational (which according to my spell check isn't even a real word which just shows how off the charts awesome this year has been).  He has made the most amazing progress in every aspect of his school day (something I worried greatly about when we lost the Arbaclofen).  I knew he was making progress with OT and Chevonne in October when I received this picture from her...

                                                       
I've seen pictures like this and replied how nice it was and asked the question I was sure I knew the answer to "was it hand over hand?"  which had been the only way to get legible numbers/letters from Parker up until then.  Her reply "No!!  He did it all on his own!!"  She talked about how much he loved numbers and how motivating this was for him.  I was ... an incredibly proud momma :-)

A couple months later another picture...



and the caption "the best grasp he's done all year, we need to work on the wrist but it only took a small verbal prompt to hold it at the end."  If you are not the mom of a child with a disability, this may not seem like much to you but to me, I knew just how huge this was.

Then, without any warning it happened.  I was writing Parker's letter to Santa with him and said, "Ok, YOU sign it."  I've said this for years, I was waiting for his Parker "P" but then the most amazing thing happened - he just started writing his name.  In complete disbelief I grabbed my phone and said each letter even though he didn't need me to and recorded it.  I know if I hadn't seen it with my own eyes I never would have believed it.  This was my Christmas miracle

at 14 1/2 years old Parker wrote his name, when I wasn't even expecting it.  I still cry when I watch it.  Mrs. Horton was the one who was not at all surprised but beamed with pride when she told me he had been doing almost all of his own writing at school.  She, like all of his teachers and paras really push him.  "This is high school you gotta do it"!

Back to our IEP - Chevonne was the last to give her report, I was prepared for the goodbye.  She lit up (which is typical of her, she is always a ray of sunshine - always!) and began passing around samples of what Parker was doing at the beginning of the year and what he is doing now.  Amazing, tremendous, unbelievable... all words mentioned that didn't come close to describing the progress that was happening.

I had been doing so well, not a single tear had fallen yet during this meeting. I was very proud of myself,  by now I was usually at least on my 8th kleenex but as soon as Chevonne said her first words they came. Tears. Tears of pride.  Tears of accomplishment.  Tears of IEP stress.  Tears.  I couldn't even look at Chevonne.  I played the video of Parker writing his name on that's on my phone for the team members who are not my Facebook friends (shockingly there are still people who I am not FB friends with!) and tried to prepare myself to either agree to let OT services subside or fight to keep them.  I knew no matter how much I wanted to fight, I would follow Chevonne's lead.  I have such tremendous respect for her that at this point in our journey I needed to let her guide me.

I don't recall much of what she said, I focused on the examples she shared, the excitement in her voice and waited.  Then she paused, sat tall, folded her hands together and said, "I know we said that I would work with Parker through the first half of the school year only..."  my heart started to sink ... "I never go back on my recommendations... " it was like time was moving in slow motion, I could hear her words but had tuned out everyone else in the room, it was just Chevonne and I when I looked up and heard her say "I am staying on this team.  I am going to continue to work with Parker.  He has made such significant progress that I never thought I'd see.  Things I was sure were not going to happen, he has done.  I have written new goals for him.  We are going to keep moving along. I am not stopping now."  (Disclaimer: those may not have been her exact words but they are pretty close and what I remember!).

In that moment, this IEP went down as the best ever in the history of Parker's IEPs.

At the direction of Mrs. Martin we took time to acknowledge all the great people who has been a part of Parker's team through the years as it took every single one of them to be a piece of Parker's life to get him to where he is now.  It has taken a team, it will continue to take a team and I'm beyond thrilled that Miss Chevonne is still a part of that team :-)

In a time where the press is filled with school personnel who are doing unspeakable acts to children, it's important we also recognize those who are doing an outstanding job.  Parker has provided many challenges for his team members over the years yet as they got to know him, each one found a new strength in him.  Each one remains a part of his life and follows his journey today.  Each one is extremely important to me and to our family. I am thankful for every single one of them and the role they have played or currently play in his life.  One day, he's going to be a grown up well adjusted independent man and I have an entire village of people to thank for being a part of the journey to make that happen.  They are the people many forget to thank, yet they really are the true unsung heros in the lives of our kids every day.

We still have a long road ahead but I have faith we will continue to be amazed at the progress Parker makes, the lives he touches and the many people who will continue to believe in him.  But for now, I'm going to spend a little more time focusing on today and the amazing teams that have gotten us here and continuing to be thankful for them all and remind everyone to never give up.

Saturday, December 7, 2013

Stop The (Elf) hate!

I'm 39 years old and it's a little after 1 am on a Friday night. No, I haven't been out for a night on the town. I am, however, patiently waiting for the cookies our elves are making to finish so I can complete their project for tonight.  Yes, I am "one of those" over achieving elf people.





Since the elves have returned to families across the world this past week, Facebook has blown up with people complaining about them.  For every 1 post I see of an elf I easily see 15 of people complaining.

It's equally the same in the blogging world, for each blog I read that happily talks of elf antics there are 10 more rambling on about what a waste of time these elves are.

All I can say is STOP.  Seriously, please stop.  Leave the elves alone.  Move on with your lives and let go of this negativity and hate.

Don't get me wrong, not everyone has negative intentions.  Some of my friends simply don't want an elf, some are a bit freaked out by them and some - believe it or not - don't even realize they exist but are still supportive of their friends and family who do have elves.  Others take a very humorous approach to the Elf life, positioning their elves in "naughty" or illegal ways (I admit, I am very amused with these!).

It's the bashing and complaining that have pushed me to write tonight while I wait for our cookies to bake.  I really don't understand it.  You don't like the elves?  Ok. I don't recall anyone saying you had to.  You are offended by them because they "don't teach the real meaning of Christmas"?  Well, that's pretty judgmental and jumping to conclusions.  I know many elf loving families who also light the Advent candles each night and discuss the upcoming celebration of the birth of Jesus. I also know many elf loving families who believe Santa is the meaning of Christmas.  We live in a world where that's a choice and doing what works for your family should be most important. But the bottom line is - you don't know.  You don't know what else we discuss in our homes and it's saddening to see people who claim they would never have an Elf on the Shelf because it distracts from the meaning of Christmas hold themselves to a higher standard, judging those who have an elf - without knowing what people do privately or accepting that another family may have different beliefs.  The last time I checked that was the exact opposite of what God wanted me to do and be.

Religion aside - I'd really like those who feel the need to complain about the elves to stop and realize one thing... the one reason people like myself do this - our children.  You are criticizing, making fun of and disliking people for putting extra effort (and sometimes extreme lengths) into doing something that will brighten their child's day.

Yes.  That is exactly what you are doing.  You are angry at people for making their children happy, for creating a fun magical moment in time for their child, for being an involved parent.  Do you feel better about yourself now?  You've complained enough to take away some of the joy people have in doing an activity to make their own children happy.  Wow, good job. Pat your back.... Sigh.

You may not want to admit it but once you step back and read it, even if you refuse to admit it, you know it's true.

I have never met an Elf person who said to others "you HAVE to do this" or you "have to be an over achiever" if you do.  I've never met anyone who has an elf say that their family and friends have to like or approve of what they do.  There is a reason for that, do you know what it is?  Here, I will tell you -  we do not do it for you.  No, really, we don't.  We are doing it for our children.

Oh, I know where your mind is going... then why do we insist on sharing it on Social Media?  That is simple, because no matter how simple or how elaborate, we know we have just done something that our children will freak over when they see.  We wait with eager anticipation each morning to see their faces light up and know we have just brought something fun and positive to their world. And we want to share that excitement, that happiness, that idea because good is contagious too.

And it's not easy, it's not easy to keep thinking up new ideas - this allows us a way to share our experience, tips and advice with others who are looking for something to do.  Ah, yes, we share.

During a long overdue conversation with my BFF, she brought up the recent postings of a series of pictures with dinosaurs who "came to life each night" while the children slept and did many of the things our elves do.  Everyone raved over how awesome this was, how it sparked imagination, creativity and bonding.  Somehow that was ok... but the Elf on the Shelf who does the very same thing - is unacceptable. I can only hang and shake my head at this "logic".

I have friends who have angels or move wise men instead of elves, do you know what I think about that?  Brilliant!!  Seriously, brilliant, unique and - same outcome.  You have made your children happy.  I absolutely love it!

In all honesty - I do not have time for our Elves.  I don't.  I don't have time to shower most day let alone figure out what these two elves will do next.  But, I make it happen for my children.  Will they be better off in life because of it?  Doubtful.  Will they have a better childhood than someone who's parents didn't have an Elf?  Not likely.  Will they have memories, unique and special to our family that will last a life time?  Yes.  And that is what matters to me.

We live in hard, harsh, scary world and 5 days a week I have to send my children out into it.  I can't protect them from everything. I can't keep them young forever.  But I can bring joy, creativity, imagination, and laughter into each day and if from the day after Thanksgiving until Christmas Eve I sleep a little less to bring 2 elves to life - I am doing it.

I'll even enjoy that I get to do it longer than most.  As those who know me are aware, my children both were born with Fragile X Syndrome, an intellectual disability that affects Parker significantly more than Allison yet both have major challenges to over come every single day.  If saw their faces light up just one morning from the elves - you would be here each night up after 1 am to make it happen again the next day too.

My children have enough challenges.  EVERYONE has enough challenges.  So, let's stop.  Stop with the negativity.  Stop with the whining.  Stop with the elf hate.  Remember, it's just as easy to compliment as it is to complain.  And if you can't - remember, you don't have to say anything either.  Do you really feel better after complaining about people doing something fun for their kids?  You may not realize but in that same amount of time, you could have shared something positive about your children, yourself or someone you know.

We have many, many elf days left in this month.  I hope that even if you aren't a fan of the elves, you chose to be a fan of people creating wonderful memories with their children, sparking imagination and most of all starting a child's day with happiness and a smile.

Maybe if we all put a little more effort into being just a bit kinder to each other... that kindness would spread.









Wednesday, November 6, 2013

Challenging doubt


Today... I have a challenge for you. For most, it won't be an easy one - it's not for me but it is more rewarding than I could ever describe.  Not just for you but for everyone in your world.

The challenge?  Stop doubting yourself.  As a parent, as a friend, as a person... stop doubting yourself.

I don't know your whole story, I only know mine.

I don't know who put the doubts in your head.  I don't know if they were by someone else or by yourself.


If the doubts were put there by someone else - a loved one, society, a stranger... someone - that is a sign of their weakness, not yours.  They want you to doubt yourself to cover their own faults.  When you focus on doubting yourself, you overlook the imperfections of others.  It's a weak thing people do to feel better about themselves by slowly destroying you.  We are surrounded by these individuals every day, often disguised as someone who cares.  The saddest part about this is you are the type of person who would have seen past their imperfections and accepted them for who they are. Unfortunately because they cannot accept themselves they get by and get strength from manipulating others behind the guise of love or friendship to slowly bring down the the confidence you once had.

If the doubts were put there by yourself, it stems from a deeper insecurity or fear that you need to step back, dig down and try to understand.

Regardless of who or how the doubts were brought into your life what matters most is right now, today, tomorrow and each day after.   My challenge to you is not an easy one.  I know, first hand, as I likely doubt myself more than you could ever fathom doing but I've challenged myself to stop and I'm succeeding.  Slowly but I am so I know this is possible.


Are you a perfect person?  Parent?  Friend?  No.  Will you ever be?  Ummm... no.  And no one every should be.  Mistakes are part of our lives and an opportunity to learn - about who we are and who we want to be.  Little or big, we are going to make them.  How we move forward from the mistakes we make is what will define us. 

I'm not a perfect friend, or parent or person.  I don't try to be, not perfect.  I try to be the best that I can and I strive to do better.  I learn each day, from myself and from those I look up to how to be a better me.  I learn how to get up when I'm knocked down.  I learn how to hold my head high when I want to hide. I learn how to laugh when my soul only wants to cry.  I learn how to stop doubting myself.  In doing so, I learn how to be a better example for my friends, for our society and most importantly to me - for my children.


People in my life have some very high expectations of me and they should just as I should and do of them.   There is a difference between a high expectation and an unrealistic expectation.  People have those of me as well. Unrealistic expectations of yourself or someone else only sets up failure to happen and doubt to submerge reality. In this challenge of ending the doubt, seeing the difference between high expectations and unrealistic ones is key.


You are a good person. You do good things.  You are an involved parent. You make mistakes. You are human.  You are a teacher to everyone who crosses your path. Let go of the doubt and see the importance of the lessons you are teaching.

Others see it.  It's time for you to realize your importance and significance in this world too.  Embrace your worth because it's significant.

I promise, when you embrace it and let go of the doubt that clouds your vision, you will be happier and you will see each day clearly for the amazing and positive impact you make.


Challenge on. 

Monday, November 4, 2013

Defining the dreams

I rarely ever remember having bad dreams when I was younger.  Maybe I did and I've just blocked them out but, honestly, I don't remember them being a part of my childhood.

When I was around 20 and moved into my first apartment I started to have nightmares.  Wake me from my sleep screaming, leave me crying myself back to sleep nightmares.

Usually they are pretty much the same.  Something is trying to kill me.  Usually aliens in the form of people who are with me - causing the ceiling to start to lower to crush me or if I move a certain way/say a certain thing it will trigger a response that leads to my death.  So - yeah - fun stuff which is why I refuse to talk about aliens or watch anything with them in it. I've adjusted to these and stopped trying to figure them out.  I know enough now that when I am startled awake I can reason with myself enough to relax and sleep again. (This does partially explain why I rarely sleep too!)

A couple nights ago though, I had the most horrible nightmare and I can't shake it.  A good friend asked me about it and I could not stop crying as I shared the details.  So, I've decided to blog about it.  Sometimes when I write things out, I find my answer.  I'm hoping for that to happen.  If not, I'm hoping someone else can shed some light and help me shake this experience.

A couple of fun Holly facts first.
1. I don't watch scary movies.
2. I don't watch violent movies.
3. Yes, I watch The Walking Dead but that's zombies and I can draw that line ;-)  Not to mention it's the only TV show I watch.

That said.  This nightmare was not about me, I'm sure that is why I can't shake it and need to figure it out.  It's about someone I love and look up to more than he will likely ever realize... my dad.

Please remember this is not real - it was a nightmare. A dream.  This did not happen in real life. I'm just trying to find it's meaning.


In this nightmare, I was living in a corner house on the edge of town.  It was red brick and like a ranch style house but double in length.  There was a huge morton garage like building that was part of my property too.  There were a lot of people at my house, 50-ish, some I knew, some I didn't.  My parents were there, as was my daughter and Morgan Freeman.  (I just saw Last Vegas - which I loved - so I'm sure that's how he ended up in the mix!).  My dad, although he was talking to everyone (very typical of him!) was not happy to be there.  He didn't want to be.  I begged him to come and he did. Because, that's what dad's do when their daughters beg (well, sometimes).

It was a summer day and there was a group of St. Jude runners that were set to go by the house.  We all went outside to cheer them on as they ran by.  It was so exciting and we were all so proud to cheer them on as they ran for such a great cause.

When we returned inside there were 2 gunman, wearing masks and holding machine gun like guns.  They had on solid green uniform like clothes and black masks covering their heads and faces, ski masks, you could see their eyes.

They divided us into groups and put us in the Morton building/shed.  Their plans were to shoot each group. Whoever lived - lived.  Whoever didn't, well they died.  I don't recall who all was in my group but my parents were - so was Allison and Morgan Freeman.  My dad insisted Allison and I go behind him.  There were people in front of him but not many.  I was directly behind him, Allison behind me.  Morgan Freeman was next to my dad and my mom was behind him. 

I remember my dad telling me to be very quiet and not to move.  He told me not to move at least twice (I may not listen very well and sometimes think I know what's better).  I closed my eyes, holding onto my dad with one hand and the other arm was gripped around Allison and the shooting began. I could hear the sounds of the firing getting closer and then feel the weight of lifeless bodies against me.  When it stopped they just left.  Just walked away.  While most people stood up and just went about the day, I remember slowly pushing my dad's body off of Allison and I.  Allison was fine. My mom was fine.  Morgan Freeman was fine and had his arms wrapped around my mom.  I was fine.  My dad.... he was not.  He was dead.  And I lost it.  I woke up crying and saying the words "He didn't want to come... he didn't even want to come." to my mom as I held my dad.

And that's where it ended.  I cried the entire time I typed this.  I am sure there is a meaning to it and I need to figure it out. 

I spent the entire day wanting and needing to call my dad but it took until around 5pm before I could bring myself to do it.  I cried as the phone rang and I waited for him to answer.  I absorbed every second he laughed (which he does often) and our conversation.

I needed to ask him for a favor.  To do something for me.  It took until 5 pm for me to convince myself that I could do this.  That I could ask for a favor and it wouldn't lead to his death.  He was more than happy to help me out (he's building something for me!)  just as he always is.

So, I'm trying to wrap my brain around this.  There are so many things going on...
One of my birches lost her father last week and he was laid to rest the day of my nightmare.
My dad's brother (my uncle) is going through a lot right now and we know each day is a gift.
My BFF has buried 2 grandfathers in the past year.
There's been a lot of death. So that could be weighing on my mind. Maybe I'm so afraid of losing him and not being able to stop it from happening.

Maybe I ask too much of him.  Maybe the favors (which I don't feel are that many!) are too many.  Maybe I need to stop asking him for help.  (I kinda ruled that out when I needed his help!).

Maybe I need to accept that as much as I want to protect my dad from the hurtful things in life - I can't.  I can't take away the pain he feels, I can't make everything better... I can't protect him from everything... yet he can continue to protect me.  Maybe that's it.  Maybe I needed to know that someone is protecting me.  That I can let go of some of my fears because he's always looking out for me.

I don't know... and Morgan Freeman... I know I just saw a great movie with him in it but it's odd to me he would be such a memorable part of the dream.


I think I just figured it out.  See, THIS is why I blog - to find my answers.  I don't know how I missed this.


Morgan Freeman has a thing for my mom.
  If she left my dad though, it would break his heart and he would die.



Well, there we go.  Mystery solved!  I feel so much better.  Seriously.  No dream interpretations needed.  I have my answer and I like it.  I'm sticking with it!

And clearly, Morgan Freeman has excellent taste in women ;-)