Don't Let The Door Hit You

This is our new motto to live by, "Don't let the door hit you on the way out!"  I am tired of the games, the review of medical history, the explanation of behaviors, and the longing looks from those around us.  I am tired of helping people do a job that I could with my eyes closed most days and a job I am damn good at.  I am done with watching you struggle and being told it is what is best for you in the long run.  So, to all the professionals who do not understand, to the providers who have given up, and the individuals who like to judge, "Don't let the door hit you on the way out."  

You are such an amazing young boy who has grown before my eyes.  You have a passion for music, reading, army men, spiderman, and electronics.  You would go to the end of the earth to be with your friends and around peers.  You bring a smile to my face every morning that I find new items hidden in your bed as you greet me with a "hi!" and huge grin.  Your eyes sparkle with a light that they did not have three years ago and for that reason we will continue to thrive.  

Trust and anxiety are still difficult for you and rightfully so.  A dear friend has been trying to tell me, and I finally understand, that "I am all you need,"  that "I am your all."  Finally, as I let my guard down and stop listening to the other voices telling me I can't do, I realize what this means.  I am your rock, your foundation, and your emotional security.  I am the one that knows you, understands you, and motivates you.  I am your all and all that you need.  

This does not mean that I have all the answers or that we will not always our moments because you love to test, push, and challenge me daily.  It does not mean that we do not need the help of specialists for your speech, occupational, and physical therapies and that yes, you will still have to go to see these lovely people.  What it does mean though is I am your mom and I know what is best for you.  I know when you have reached your limit.  When someone is not a good match and when we need to pull back.  Most of all I am able to provide you an education.  To allow you to trust and grow in your educational needs on a level that providers, other teachers, tutors, and therapists cannot.  It has only taken us five different school placements, handfuls of teachers, and multiple consultants for me to finally take the advice of someone who knows me the best.  I am all you need and I am your all.  

You are an extremely bright and motivated child that loves to use manipulation and behaviors to escape the demands of education from others. With me though, you want to show me what know.  You want me to clap for you, praise you, and brag about how smart you.  You do not see this motivation in others and it requires a level of trust that we honestly do not have time to wait for.  Recently you have shown me that you are reading sight words, that you have an understanding of sentences as you fill in missing words, that you can sort by beginning sounds, understanding rhyming, and can answer comprehension questions after a book is read aloud.  You are honestly bored, waiting to be challenged and waiting for the world to rise to your expectations instead of us waiting for you to rise to ours.  We are discovering that you are performing well beyond where we thought you were and that this coming year could be a lot of exciting changes.

You are challenging me to find ways to teach a child with limited expressive vocabulary to read.  I mean seriously, how do you demonstrate reading using an AAC device?  Well, we are about to find out!  You are challenging me to think one step ahead.  To know always have the new set of academics ready because you probably already know the answers to the ones in my hand.  You are challenging me to find new opportunities in the community for you - lets just say a full day summer camp and horseback riding lessons ought to wear you out in the coming months.  You are challenging me to think about what is functional and important to your future versus what I want you to learn.  You area also challenging me to rethink our interactions, my parenting, and what the future may hold for us.  These challenges are so different from three years ago when instead you were challenging me by throwing yourself down the stairs or barking like a dog 24/7.  

So, you and I will continue to put one foot in front of the other and create our own path.  One day I will write the book from my perspective and I am sure you will fill in your opinions on how crazy I really was as your mother.  We truly are taking "The Path Less Often Taken" and I wouldn't have it any other way.

Keep on Truckin

Love

Mom

My Heart Crumbles

Your Look

Your Eyes

Your Soul

My heart crumbles every time I hear the cry.  Every time I see the look in your eyes.  Every time I am reminded of the pain you endure in your soul.

I don't know what I can do.  How I can make it better.  I don't know how I can hold it together for you.

I feel guilty saying this.  You go through this multiple days a week, even sometimes multiple times a day.  You rage in anger, you don't have a voice to communicate, you lose sight of who you are and how far you have come.  You lose sight of your safety and check out of reality.

The blank stare comes across your face. Your eyes disconnect from us and look distant.  You cry out for "help" and say "ouch" but yet there is nothing we can help you with and there is no visible wound that we can comfort.

At times I can hold you.  I can tell you I am here for you, that you are okay, and that life goes on.  Other times though, you have to go through it. You have to be able to have your moments in order for us to move forward.  It hurts me and my heart crumbles to listen.

Many times I do not understand the why.  I do not understand why being asked to use bingo dotters, or to clean up your toys, or to put your shoes on can end in such a violent rage of emotion.  In the beginning I think I was able to detach better.  As much as I knew I was your mom three years ago and loved you with all my heart, our emotional bond has grown so much stronger that we feel each others emotions.  We read each other, we know our next moves, and we both relay on the other deeper then either of us ever expected possible.

You have broken down my walls I didn't even know I had and I have taken down bricks to your walls.  During your emotions though I am scared that the bricks I have removed have left you open to the elements.  That the bricks that have fallen have opened you up to a world that you are not ready to handle.

There are times that I wonder if I am wrong for pushing you.  That you are not ready, need more time, or honestly are just to fragile to be pushed.  During these same times though I look back at how far you have come and the gains you have made in the last three years.  Even though rages come and emotions pour out, it is still less then it used to.

I never knew what an emotional ride this would be for us.  I never knew the barriers we would be trying to overcoming and the ups and downs that this roller coaster would involve.  Maybe I was naive, maybe a little too innocent, maybe just blinded by the immediate love I had for you.  I will go to end of the earth for you.  I will carry your emotions for you, be your rock if you allow me, and protect you from the world until you are ready.

As I have said in the past, you have sewn your heart around my heart.  So as my heart crumbles I know your heart continues to grow.  I know it is a process and each day is a new day for us to conquer - together.

Our Looks

Our Eyes 

Our Soul

Will Be One

We Will Conquer

Keep on Truckin

Love 

Mom

New Beginnings in 2013

For some reason right now I am really looking forward to the new year.  Don't get me wrong, I know that basically all it means is another turn of the calendar page but for 2013 I see great new beginnings.  I cannot believe how much you have grown and changed and your determination to continue to put one foot in front of the other.

I am often times overwhelmed with the little man you are becoming. I am scared on a variety of fronts, some founded and some not so much.  One day I will be looking at you and I can't believe how far you have come in such a short period of time and then the following day I am watching you wondering how you will ever make it the fast paced world around you.  I am scared to death that we haven't done enough, that you haven't made enough progress yet, and that the gap between your skills and your age is only getting bigger.  Then I have moments when I am scared to death because you show me moments where I know you will thrive and that one day I will have to let go and allow you to try to fly.

This past year has been a fast paced run and I am not sure why.  The finish line is no closer, the strides are no longer or shorter, and towards the end we have forgotten to stop and smell the roses.  Focuses have changed, more schools have come and gone, programs have evolved, and the calm has been far from the center of our lives.  With all of this chaos, you have continued to move forward and show the world you will not go down without a fight.  In 2012 you.....

* Learned to dress yourself
* Increased your expressive vocabulary to close to 100 words using some 2-3 word phrases
* Discovered the game of hockey and learned to ice skate
* Learned a few select 3-4 letter words to show your personality
* Discovered what it means to be a smart ass
* Discontinued the use of all mood stabilizers and decreased the amount of medication needed
* Started to read sight words
* Developed a passion for science
* Learned to lay on your stomach and enjoy the view of the world from this angle
* Started tracing horizontal and vertical lines with minimal assistance
* Began to cut with regular scissors
* Overcame your fears of taking a shower versus a bath
* Drastically decreased your self-injurious behaviors
* Mastered all of your foundational skills (colors, shapes, letters, letter sounds, 1 to 1 correspondence)
* Found out about Elmo, Mickey Mouse, Woody, and Spiderman
* Continued to show resilience as schools and programs changed and peers came and went
* Developed a strong imaginary play including expanding your interests
* Found your internal motivation for independence and showed it in a variety ways
* Discovered the world of electronics

Most importantly, in 2012, you allowed your emotional walls and barriers to fall down around you.  You recently have allowed yourself to discover the world on your terms and through your own eyes.  This is your biggest accomplishment in 2012 and nothing anyone could teach you.  I could allow you to feel safe, allow you to explore, and allow you patience and understanding.  Mind you baby, patient and understanding are not two words that are often used to describe me, but you taught me this.  Over the past year you have taught me to let go of certain expectations, relax and enjoy the moment, and that I can not always predict what will happen next.  You taught me that I could not set the path for you but instead you had to be ready to pave your own path and over the last few months that is exactly what you have done.

You are the one driving 2013.  I do not know the destination of the path you paved but just as you have learned to trust me I have learned to trust you and am along for the ride.  I cannot control the twists and turns and ups and downs because this is your life story.  What I can do though is continue to support and provide for you.  I will be your biggest advocate, cheerleader, and supporter.  I will also be the first person in line when you need a shoulder to cry on or someone to lean on.  I will continue to provide you with the resources and therapies that help you meet your goals and I will continue to raise the bar for you and show you all that you are able to accomplish.

I feel as if we have finally hit the point in your emotional, academic, and social development where it is no longer a comparison to your past but simply a celebration in your success and realizing the doors to your future that each step opens for you.  I feel that although your past will always have an impact on who you are, it no longer is the dictator of who you will become... it is simply your past.

We have so many opportunities ahead of us and I am excited to see which direction you will take us in. Developmentally you are a bouncing four/five year old that is excited for your next adventure.  Language wise you are at the pivotal moment of a two year old, right before the explosion.  These two factors alone should lead to an exciting start to the new year and one that will definitely keep me on my toes.  I cannot wait to see where this adventure takes us




Keep On Truckin
Love
Mom

Magical

As Christmas day comes to a close I have thought about all Christmas means to us and the magic that is in the air.  The Christmas season is a time of imagination, growth, fairy tales, adventures, and maybe a little magic just for good measure.  This year I was able watch all the excitement grow within you and really admire the little boy that you are.

Christmas in my house was always surrounded by family traditions and ideas of what the holiday should be.  As you and I have grown over the years we have adopted some of these traditions and also created some of our own.  The one special tradition that really stood out to me this year and realize how much it meant to my mom was the "eye sparkler" under the Christmas tree.  Every year, in addition to our Santa gift, there was one present under the tree that your grandmother called the "eye sparkler."  She described it as the gift that would make our eyes just light up and the one gift, that I now understand, she put the most thought into getting for us. It was usually something we had been wanting for awhile or what we thought was  necessity in life.  Now, something you have to remember about Uncle Mike and I is that we do not get outwardly overally excited over much.  It is just not our personalities to jump up and down with a smile on our face and our "eyes sparkling."  But, as we got older we realized how much this meant to our mom and we did not want to disappoint.  I remember for a few years he and I would open all of our gifts and blink our eyes really hard while trying to smile and ask if it was our "eye sparkler"  There was one year though I had no doubt over my eye sparkler - my mom had gotten me the NBA starter jacket for the Charlotte Hornets - I know, random, but it is all I had talked about.  There was no doubt my eyes sparkled when opening that gift.

I wanted to continue this tradition.  I wanted to make sure there was the one present under the tree that would "wow" you and would be your first "eye sparkler."  I thought for days on end on what it might be and what gift you just wouldn't want to put down.  Then, I found it!  It would be the Nook HD.  I rationalized that you could use it for your homeschool program, it would foster your reading, and it would be an electronic toy that you are so drawn to these days (as is any 8 year old).  I took time to program it with books, wrap it nicely, and place it in the back under the tree so it would be last gift you opened.  What I learned this morning though was all of your gifts were your "eye sparklers."

I was reminded today that you take nothing for in granted for life. That you are so grateful for all that you have and all that you receive.  Every gift you opened this morning was greeted with "ohhhs" and "ahhhs."  You would talk about the present with "what do you see?", "I wanna .....", "oh whoa...", and much more. You opened each gift slowly and made sure all the paper was removed.  You actually looked at the gift for what it was, gave a sweet "thank you", and then pointed to the next one to open.  You face was lit up bright and happy.  You truly sensed the magic of Christmas and enjoyed yourself in the moment.  And that great electronic gift that I didn't think you would wan to put down.... well.... yes, you liked it but honestly you were just as happy today to be a playful 8 year old and let your imagination run wild as you played with your wooden train set, the star wars action figures, and your new spiderman.  The stuffed Mickey Mouse you got went everywhere with you, including the movies tonight.  

So yes, I was able to carry on the family tradition of the "eye sparkler" gift but you brought so much more meaning to it today.  Your innocence, gratitude, and unique and special outlook on life brought back the magic of Christmas for me today and reminded me of what the holiday season is about.  Today also reminded me of what a special little boy you are and that I have no worries of who you will be in the future.  

Keep on Truckin Baby
Love
Mom

Say What?

I cannot believe all of the language we are hearing these days.  For about the past week everyone you have talked to has noticed a pretty drastic increase in your communication.  Anything from your ability to put 2-3 words together independently, your imitation of words and sounds, and your ability to follow directions.  

You are coming up with new labels and requests independently such as "doughnut," "star," "spiderman," "off" and "down."  You are making your dislikes known to others, for example, running around your room naked and telling your therapist "no clothes, " "clothes all done," "no more clothes." And you are engaging others in your preferred activities by asking questions like, "do you wanna Lego orrr you wanna cereal?"  When you use language like that  we will do whatever you want!  

Without prompting you are imitating words you hear around you in order to be a part of conversations and allow your voice to be heard.  You are then using these words spontaneously just moments later and generalizing their meanings.  You are starting to realize more that words are made up of different sounds and it is the combination of these sounds that you need to focus on.  With less effort you have been able to make these sounds and your speech is more intelligible to all those around you.  

On top of this, you also do still use your communication device on occasion which has also expanded.  You used it the other day to say "welcome all, come Ms. Jody" - you were trying to welcome the babysitter and wanted her to take you to your speech therapist Jody.  Then when asked to tell what animal says "moo" you used your device to say "make me" and then laughed and walked away.  Lets just say not everyone is able to use their AAC device to give or show attitude but you have definitely found a way :)

This is a very exciting time and I am so very proud of you everyday.  I know how hard you have worked and continue to work and how much it means to you.  You clap and cheer for yourself when you are able to make new words or sounds.  You smile and giggle with happiness as others honor your requests and hear your voice.  You take great pride in all of your success which continues to be your driving force.  My mom always taught me to trust my gut and my gut is telling me that we are going to continue to see some amazing growth over the next year.

Keep on Truckin
Love
Mom

Don't you Dare.......

Growing up I was that child who always pushed the limits.  My mom would describe me as hard-headed, stubborn, a perfectionist, and oppositional.  She used to always tell people that she would tell me "don't you dare put one foot in the road!" and I would turn around, laugh a little, and say, "Mommy, two feet in the road!" and take off running away from her.  Of course as she told me this years later I just laughed not really knowing my day would come.  Well, my day has come and you have now entered that phase of life.  I would have to describe you as hard headed, stubborn, and oppositional.  Tonight I would tell you "no" as you were walking a fine line and you would just giggle and say "OHHHH No!" and then continue doing what you were not supposed to be doing.

Last night as I wrangled you into bed the baby gate fell down the stairs and crashed.  Before I had a chance to react I heard this innocent voice yell out "God Damnit!" - uh oh - mommy must need to watch her language these days.

Your therapist told you the other day that you "needed your device" and she would not let you play the game until you went to get it.  You proceeded to walk over to it and push the "need" button and then continue to ignore her and entertain yourself other ways.

Everything these days has to be done by yourself.  You are Mr. Independent and do not need the help of others.  I was watching you brush your teeth, which is a skill not yet mastered.  You could not get the toothpaste onto the toothbrush so you decided to just squeeze the toothpaste right into your mouth and then brush from there - I give you points for creativity.

As we have entered this stage you have also decided that doing school work is no longer fun.  That it is more entertaining to push the buttons of your therapists and constantly be thinking of new ways to receive attention other then sitting at the table learning about the three R's.  This ranges from stepping into the toilet, when you think the toilet seat is down, and soaking yourself.  Falling in-between the toilet and sink and getting stuck.  Climbing on the counter, desk, bed, table, or chairs - remember though, you can't even walk five feet most days without falling.  You will lay on the floor and try to push all of your work materials under the door so that they are not available to use, you will try to eat the materials you do not like, and of course, you will simply just sing at the top of your lungs acting as if no one else is in the room.  We keep pushing forward though because even through all these behaviors you continue to master skills and show your knowledge.

The other morning driving to therapy you told me "I want girl" on your device!  I didn't know that would start this early. Needless to say that will not be under your Christmas tree this year.

You still are easily entertained by Lego's, army men, swords, books, and cars.  You amuse me as you change your voice and intonation based upon what toys and what play scheme you are acting out. Your imagination is running wild these days and your interests continue to expand.

Not only have you made the academic gains and mastered all of your foundational skills, you have made great strides in your fine motor and self help skills.  You are using scissors, starting to play catch, attempting to brush your teeth, and shower by yourself.  Now, not all of these are perfect but please see the prior note that you are all about being Mr. Independent these days - I have to find new and interesting ways to help you without you knowing.

Your grandmother would have been so proud of you.  I often times imagine her laughing from above at me as I try to navigate this adventure of parenting.   I know that she would have been your second biggest cheerleader, that she would be giggling by your side, and spoiling you rotten.  As I write to you I also often times look back at what my mom wrote to me in my journal.  I often times just hope for a glimmer of advice or the answer to the questions.  Unfortunately, the only secret it holds is that I am responsible for the little man you are becoming :)  That you are following in my footsteps, that you have my personality, and that I would not have it any other way.

Keep on Truckin Baby
Love
Mom

Articulation

A vital component to your speech. The more progress we can make on your articulation of specific speech sounds the more understandable you will be to those around you.  Before we could not have a strong focus on this because you were not able to directly imitate when asked.  Recently though, you have decided that you enjoy imitating sounds and words and you patiently work with individuals on perfecting them.  I had the joy of watching you in your speech session earlier this week and could not have been prouder of you.  Your hard work, determination, persistence, and patience through this process continues to amaze me.  We still have a long road ahead of us but its nice to stop and listen to the sounds every now and then :)

Keep On Truckin

Love

Mom