Wednesday, November 9, 2016

"Do you know who the president is?"

This was the question I asked my son this morning as we waited on the bus. The first thing he did was repeat the word president. I asked again, "Who?" He does pretty good with the "wh" questions most of the time so I knew I had a fair shot of him answering appropriately.

He stared at me intently and I could see the work going into him forming his answer. Then his reply came, "George Washington".

Fair enough buddy, fair enough.

Baby Cooper


I know there are a lot of people who are sad, upset and worried today. Many of us are in fact still attempting to wrap our heads around the fact that Donald Trump, is the President of the United States of America.

I live in a small little bubble of a life. I can tell you this, it's a bubble the doesn't like change. We thrive on routine and sameness. It's comforting, it's security. We expend a great deal of energy ensuring things follow routine and stay the same.

That is simply not always possible.

What I can share with you today is something that it has taken me years to embrace.

Change is good.

However, much like doing the right thing, it is rarely easy.

Some of my son's greatest periods of progress, some of his most incredible periods of growth have accompanied his biggest disruptions in routine, and his most life changing moments.

I also have to tell you this, most of these changes we fought with everything we had to prevent.

People struggle with change, even under the best of circumstances, even when we ask for it.

I am a mother of a son with a severe disability, I am also the mother of four daughters.  I took my vote in this election very seriously, it is their future and it is important.

I voted for Trump.

I don't have to justify my choice to anyone, but I know many will wonder how a parent of a child with a disability could possibly vote for a man who made fun of someone with a disability...

So I want to tell you this...Donald Trump was not the first and he will not be the last. I see it and hear it every day, and it is everywhere. The lack of respect and disregard for the feelings and value of those with disabilities is rampant and woven into our very existence. It will take an intense and concerted effort to shift the views of so many.

You find the words and the gestures in every venue, from our schools, to our televisions, they are in our churches and our homes. We teach our children consciously and subconsciously that it is ok to dismiss the life that is different, that is disabled, that is less than perfect.

We have created this environment.

Over and over again we prove this disregard, literally thousands of times a day, when we choose to end the life of a baby because they are not what we wanted. I know it is a hard choice, and I know it is complicated, and represents great change...but it is life.

Many will argue that some are pro birth as opposed to being truly prolife because they don't see enough evidence to convince them that everyone who speaks out against abortion is doing enough to speak out and make a difference at every level of life.

We are many members of one body, each tasked, called and gifted with unique abilities and purposes. Speaking out for one level doesn't mean you don't care about all, it just means this is where your spot is and you trust there are others who will step in to their place and speak and move. We can't do this alone.  Our children, as unique as they may be were also created to be part of a bigger picture and purpose.

The have real value, they are important.

Will Donald Trump change his ways, will he stop making fun of people and saying mean things? Will he follow through with his promise of being a prolife president?

I don't know.

I pray he will.

I believe that to truly see change in the way our children are viewed and treated in the world we find ourselves, we have to stand up and speak up. Not with a "well they are here so you have to be nice and take care of them attitude" but with a voice that is loud and clear, one that says...

"From their very creation, from the moment they were conceived they have value, they have a purpose, they are important."

We can not successfully advocate for their rights and respect when we do not value and respect every single moment of their existence.

Hillary Clinton has stepped further and further away from this view, and I think we have seen Trump move closer toward this view.

I could never bring myself to vote for a woman who does not hold a view of life that respects the existence of my son.

I pray we find the common ground, in love and respect for the future of our children, and work together to truly change how they are viewed.










Wednesday, October 26, 2016

"Yes Virginia, I Am Voting For Trump": Three Easy Ways To Tell People You Are Voting For Trump

I don't know about your children, but mine are very aware of the impending Presidential Election.
The youngest two are especially inquisitive as to who we are "for" in this race. 

I have, I think, rather successfully avoided coming straight out and providing the exact answer of who I will vote for. But at some point, I believe that I have to break the silence, stop evading and deflecting, plant my feet and not pivot.

At some point I have to shoot the ball.

If you find yourself in a similar situation, maybe you are struggling to tell your child that, "Yes I am voting for Trump." or maybe you just don't know how to tell friends and family what your final decision is, or perhaps...you just can't physically get the words, "I am voting for Trump." to come out of your mouth.  If you find yourself in any of these situations, you may want to join me in implementing one of these fun and creative ways to announce you are in fact...Voting for Trump.

1. The Tried and True "Candidate" Reveal!

Throw a party! Have cake! Invite people who are easily distracted buy small sandwiches and free drinks. Plan fun games and hire a pony for the kids to ride around on. They may not even notice you just announced who you are voting for, and it's a Trump!



2. Family Game Night!

The kids will be so excited for a night of family fun playing Trump Monopoly! When the little pewter Hillary head lands in jail, you can just laugh and laugh and casually mention that since she is in jail you are voting for Trump!



3. Draw A Name Out Of A Hat!

Only put in Trump! This one is easy, it takes any real pressure off of you to defend your decision because well...You know, you drew a name out of a hat!



Or if none of these methods work for you, maybe you can just write a blog post about ways to tell people you are voting for Trump and they will be so distracted by your suggestions that they will not actually notice...you are in fact telling them you are voting for Trump...

Tuesday, October 11, 2016

Social Media at Eleven



Social media, can I henceforward just refer to it as the spawn of Satan that it is? I mean it's pretty, it seems harmless enough, but...

Do we need to take our eleven year olds there?

The answer is "yes", and the answer is wrong.

Yet, it is the answer we give everyday when we hand them phones, ipods and devices that unlock their access to the wonderful world of social media.

Even when we think we have restrictions in place; limitations and safe-guards...we are fools.

We haven't just handed them the keys, to the proverbial "gates of hell", we have flung that sucker wide open and driven them through it.

You know why we drove them through?

Because they're not old enough to drive themselves, they are ELEVEN!

Please take a moment and sit in that fact.

They are eleven years old.

I get it, children grow up faster these days, they are exposed to more.

They don't have to be. So I ask you, "Why?"

The why, my friends, is perfectly summed up in these four words of a confident young girl...

"My mom's too lazy."

This was her response to the question in a group text, "Does anyone's mom check their phone?"

Where did her confidence come from you might ask. I will tell you, it came from knowing that no one will look at her phone, no one will check her text messages or group chats. She felt perfectly secure in saying and doing whatever she wanted to.

She's eleven.

Some of you are sitting there feeling pretty smug right now, pretty confident in your own parenting and watchfulness. Let me tell you something. I pray to God that you are right in your assumptions, in your confidence.

I pray, that you are not wrong about your child.

I was wrong about mine.

Do you hear me?

I was every bit as confident as you are feeling right now.

Until yesterday.

Yesterday I picked up my childs ipod to plug it in to charge and I was intrigued by the notifications for instagram. So I clicked on the icon to find out what those eight notifications were...

Did you know that you could do group texting through Instagram? I didn't. If you are laughing right now and saying "of course I knew that!" To that I say "good for you, do you read them?" again you answer, "of course I read them?" (I know at this very moment you are trying to remember the last time you actually did read them and  also making a mental note to read them as soon as you are finished with this...I know you, I am you.) so finally I ask, "What about the ones they delete?"

Have you read those?

You're not smiling right now are you.

It's ok. I'm not either.

You know why? Because when I asked my child about what I had read yesterday, their pained response was "I deleted it".

"I deleted it!"

Are you paying attention now.

I didn't even see what they deemed bad enough to delete.

Dear God, what could it have been.

Oh guys, you have to listen to me. Seriously, we have to back the car up and get them out of there. They don't have the ability to grasp the consequences of their actions, but we do. Are you listening to me, WE DO!

"Oh my child knows better, they know if I ever catch them..."

Yeah, yeah we all know. We also know, that you are not going to, because...

"My mom's too lazy."

It's easy. It's easy to say yes and let them have and do what everyone else is doing. Here's the deal...and you already know, the right thing is rarely easy.

Our children know that.

You know how I know they know? Because my child was saying "they just...", "they said...", "He...", "She..." and finally...

"it was hard to say 'no' "

No, is a big hard word, especially when you are eleven and in way over your head.

It's hard for all of us to say sometimes.

I want you to know, what I know.

They are eleven and they are exposed to a lot of things that are confusing and a lot of things they don't understand, but they are figuring it out with lightening speed. You are right about one thing, kids grow up a lot faster than they used too...

But only if we let them.

So what do we do?

Honestly, I am still wading through that, figuring out what is the right thing for my children.
I know that I don't want to read the words of eleven year olds that say things like, "He had his hand on my thigh" and "He will probably be the first one to kill himself". I don't want to read texts from eleven year olds talking about who is "lit" and the fact that all of this is riddled with profanity, well I can assume you are at least not surprised by that one.

My guess is you don't want to read these things either.

Maybe, that is why you don't.

They are only eleven, it's not too late.






Tuesday, October 4, 2016

All My Rowdy Friends Have Settled Down



There's a Hank Williams Jr. song with a line about corn bread and ice tea taking the place of pills and 90 proof...it's been stuck in my head for days.

I sat down to my 9,876th IEP meeting recently, and as the teacher suggested a plan for more inclusion time...my eyes glazed over and my mind wandered away, off in the distance I heard him say the word "worksheet".

Snapping back to the task at hand, I found myself saying..."No."

You see, we have fought, and we have raised some...well you know how the saying goes....

but, "hangovers hurt more than they used to."  I generally avoid them.

So we find ourselves in a place where we are a little older, a little more tired, I guess you could say we have "settled down." While I do enjoy the occasional delusion of wisdom, and thinking we have developed impressive skills in negotiations, I suppose the most important thing is, we have had time to come to terms with reality.

Gripping reality is an on-going, never ending process.

Because you see, our children will always do things differently. We will always have those moments when we see other children and can't help but feel that twinge of 'what if" (I don't think we are supposed to say that out loud, you may not know this but I wear socks with my Birkenstocks in the winter so caring what others think is not high on my list of priorities)  Sometimes it's hard when  we see other children getting academic awards and scholarships. There can be a little sadness at the sight of teenagers going out on their first dates, leaving for prom and falling in love. We often stand back and wistfully watch as they get married, start careers and families. What we feel is normal. It's a reflection of our humanness, our innate desire for our children to do and experience all the world has to offer.

Sometimes I struggle not to go to those places.

I constantly remind myself that God's plan for my son will far outshine anything that I could have planned for him. I also know that I may never understand what exactly that plan is, what his purpose is. I am grateful for what I do get to see and understand, and I will continue to fight and work for him to have what he needs. But ultimately, I trust God to take care of the details of His own plan for Cooper.

I will give it to you straight, I feel worn down from years of battling the same battle; school systems, administrations and yes even teachers, God bless them...seriously God bless them we could not do this with out them...But all too often they are all  desperately and doggedly entrenched in their beliefs and routines to the point that there is no better example of the "Hey lets try to hammer this square peg in a round hole" analogy.

It's easy to get stuck in wanting your kid to do it the same way as everyone else's child, especially when it comes to school. The thing about that, what I have learned over the years...Cooper shines when he is being Cooper. While he is at school being Cooper can look like whatever it needs to look like in order for him to be prepared for his future.

So when I heard inclusion time and worksheets...I simply thought "no". It's a nice idea and it may work and be appropriate for some, but at this point, at this time in Cooper's life...the answer is "no".

Actually my answer was. "I have a thought, what if we did something totally different..."

I believe in inclusion with my whole heart. I do.

What I don't believe is, inclusion will look exactly the same for every child. I don't believe inclusion is as simple as sitting in a classroom with typical peers, although that is a very important part. What you need to understand is, inclusion begins in the heart. It begins when we as parents first wrestle with a diagnosis and accept its reality in our lives. Inclusion is a seed we plant in the heart of each one of our children and it is our job to make sure it grows. It grows when we reach out to families struggling with finding a place at church to meet their needs. It grows when we step up at the play ground and talk to the mom with the child that plays differently than the others. It grows when we welcome every child into our classroom with eager anticipation and high expectations.

 Inclusion grows when we are living examples for our children.

So when I sat in that meeting and tossed out some ideas, and the teacher beside me sat up straight in his chair and leaned forward, saying, "I like that, I think that's a good idea.", when the assistant principal sitting across the table was taking notes, emailing people and tossing out their own ideas...I had to smile, because...

"none of us do things quite like we used to do...and all my rowdy friends have settled down"

If you would like to put all of the lyrics to that song together just click the link:
Hank Williams Jr. - All My Rowdy Friends (have Settled Down) Lyrics | MetroLyrics

Tuesday, September 20, 2016

Happy Birthday Cooper


Today you are seventeen.


I sit here, a million words running through my mind, because there is so much I could say. None of it seems quite enough. You, my son, are a man of few words and like-wise there are few words to adequately describe you. 

In the eyes of the world you are practically an adult. At six feet tall, you look every bit the part of being grown up. But when I look at you, I still see a little boy, my buddy.

You have been my buddy your entire life. From the beginning, waking up at the exact same time every night, we spent quality time together as I rocked you back to sleep. This is when I first discovered Martha Stewart...thank you.

You explored the world your own way and taught me that we didn't have to do things like everyone else. Why bounce a basket ball when you can lick it? This is where I learned not to care what anyone else thinks...thank you.

You refused to be hidden, tucked away "out of sight and out of mind". The school superintendent knows your name, that's ok. This is where I learned the importance of standing up for what I believe in...thank you

You gave me a voice, and I have tried so hard to give you one. 

Now more than ever I realize, you have always had a voice. You have used it from the very beginning it has just taken me and the rest of the world a while to catch up and learn to listen.



Autism brings with it many challenges, and some have been very hard on you, but through them all you have taught me many things:
  • Because of you I understand someone can have a voice with out speaking. 
  • Because of you I see and hear things I never would have noticed.
  • Because of you I have learned what it means to be patient, and determined.
  • Because of you I am grateful for successes and failures, and I have seen the value of both.
  • Because of you I found a voice I never knew existed.

Time has moved quickly and I often feel I have failed you, that I haven't done enough. It's not that I wanted to "fix" you or "change" you...I just wanted to give you what you needed and help you understand the world around you.

But I think that maybe, it is you who are helping me understand.

Happy Birthday Cooper



Tuesday, September 13, 2016

Happy Birthday Little Sisters

Oh little sisters, you have known your brother and Autism from the very beginning of your lives.




It is your normal,

it's our family's normal now.

You didn't have to adjust to it.

You didn't have to accept a change in your routines or learn to do things differently.

It is all you have known.

A life with Autism.

It doesn't seem that long ago that you realized not all brothers were "buddies" and it started to occur to you...

your brother is different.

Watching you two grow these last eleven years has been an incredible gift. You are loving and smart, soaking up everything around you. Quick to use humor and your kindheartedness overflowing, you are the perfect little sisters for a brother that will continue to face many challenges through out his life.

I have watched you take his hand in parking lots, and while the casual observer probably assumed he was watching out for you, I knew you were making sure he was safe.

I have listened as you asked to be the one to give him a special treat because you wanted to see how excited he would be.

I have watched as you carefully picked out the perfect gifts for him on his birthday and Christmas, knowing he would not do the same for you.

I held back tears as time and again you protectively explained to your friends things that might make your brother upset.

Today is your birthday.

You are growing up so fast and as much as I would like to freeze time, I am equally excited to see what God has planned for your lives. Because I know that the kindness and patience you have shown to your brother so far, is only the beginning of what you can do in this world.

You have both asked why I do not write about you, why I write about your brother. So I want to tell you why.

I write about your brother and the impact of Autism on our lives so that others will know they are not the only ones. I write about him to hopefully help people understand his potential and see his value to our community and world. I share his story because he can't and his story is important.

The truth is, I don't write about you because, it's not my story to tell.

It is yours.

The two of you will write your stories, and you will write them well.

What I want you to know is this, I can not wait to read them.






Tuesday, September 6, 2016

School Pick-up Line Confessional: Braless Patience

Cooper and Carlton taking a rest on the rocks
I remember my mother commenting once on how much patience I have with Cooper. At the time I just said, "well what else am I going to do."

Cooper does things his own way, in his own time. 

That's not so different from the rest of us, except in some ways it really is.

Yesterday we went to Lowes. My husband was shopping for a new leaf blower and we also wanted to look at some rocks for landscaping. 

Our daughter was driving in from college to spend the night. She was almost in town so she met us at the store and picked up her two little sisters, for some extra visiting. This left just me, my husband and Cooper to shop. 

Sounds lovely doesn't it.

I could leave it right there and you would think what a perfect day, perfect family. Man, they are really doing great. Some of you might even think, "if only we could do that." 

Well, you can stop, because how does that song go about a rolling down hill like a snowball headed for...you know where I am going with this...

it did not go well.

Mind you it's went worse, but it did not go good. 

It had been a while since we have had to abandon ship, but abandon ship we did and Cooper led the way.

We arrived at the store and everyone got out. The girls ran over to their sister's car, hopped in and they were off. Cooper was headed for the store and my husband and I were right behind him. We were almost in the store when Cooper started asking for the little girls. 

It was at this point that I knew we were headed for stormy seas. I also realized it was all my fault. I did nothing to prep him.

Nothing. 

When we are going somewhere, or I am leaving, I write out for Cooper what is going on. He reads it and he's good. You see, he doesn't easily process a lot of spoken words, but he can read.

So here we are with a guy who has no idea what is going on or where his sisters are...and my husband wants to read about every leaf blower the store has to offer, and go up and down every isle twice looking for just the right rocks.

And me, well...I was trying to have patience...with both of them and myself. I was blaming myself because I should have known better, but still...I make mistakes.

Patience: "the capacity to accept or tolerate delay, trouble, or suffering without getting angry or upset."

None of us were overflowing with patience on this trip. Cooper was pointing at every leaf blower saying, "that one!"
My husband was determined to finish reading, and I was determined not to say the bad words in my head, out loud.

I put my hand on Cooper's arm and I could feel him trembling, and I knew. We had pushed him to the limit. 

He ran.

We ran.

We caught him and we left.

When my husband put Cooper in the car he turned the child safety locks on the doors. Cooper has only opened the door on a moving car once. Once is enough. When Cooper is upset we child lock the doors.

So this morning I had to take the little girls to school at the last minute. Typically their daddy takes them, but every once in while I do. I'm just going to keep it real here and tell you that I was in my pajamas and without a bra. I have never, not put on pants and a bra to take my children to school.

Until today.

I have never, ever had to get out of the car when I have taken the my children to school.

Until today.

I pulled through the drop off line, stopped the car, told them to "have a good day" and they said...

"mom unlock the door."

Child locks.

I held up the very long drop off line as I got out in all of my glory and walked around to open the door and let them out.

Braless Patience, 

Free flowing, unhindered.

Oh God you do have a sense of humor and a lot of patience.