The Fight - Round 3

The definition of fighter is a person with the will, courage, determination, ability, or disposition to fight.    Fight is then further defined as any contest of struggle.  You my young man are a fighter.  Your will, courage, determination, ability, and passion have allowed you to fight and overcome many obstacles in your life.

Round One : Biological Home
It kills me to know that in your life you had to learn "awful" first.  You didn't have anything to compare it to but you started in this world without the foundations of love and acceptance.  You had to fight for the first three years to overcome abuse, neglect, isolation, drug exposure, filth, and the list went on.  You used your common sense and knowledge to survive.  You stole food from counter tops, drank water from a fish tank, and somehow managed to survive those first 3.5 years.  You literally fought for your life and you won round one.

Round Two : Foster Care
From the age of 3.5 years to 5.5 years you fought to understand your world and surroundings.  You had constant reminders of your past from those you saw daily.  You didn't understand the words you were hearing and had no way to communicate what you needed and what you had been through.  You slipped under the radar for too long for your needs which caused much of the emotional abuse to build. You remained the unknown and the ticking time bomb.  You withdrew even further and fought against moving forward.  You were not ready to let go of your past nor did anyone know how to help you.  You literally fought against your life and honestly you lost round two.  You were knocked down and many had given up on hopes for you progressing.

Round Three : My Little Hot Mess
This has been a long round with both of us being knocked down but we both seem to keep getting up again before the final count.  The fight is different this time though.  Our motives are constantly changing, or goals are growing, and we are evolving daily.  Some days you are fighting against the system and trying hard not to grow.  Other days you are fighting to take that next steps and prove to the world who you are.  Many days I am fighting the world with you, knocking down walls for you to walk through with ease so that you can continue to progress.  There are days though when we are fighting each other.  When I am pushing you to the next step, setting your bar higher then ever before and accepting nothing less, and at the same time you are content with where you currently are and are fighting to pull that bar down.  With all of this we have learned balance and how to tag team our fight as opposed to picking different battles.  Round three is still on but for now you are winning.

This summer has been all about that balance and me learning to listen to you.  You have taught me that when it comes to you making strides that less is more and your biggest gains are when it comes naturally and through your environment and play.  You have found ways to tell me that 14 one on one therapies a week is not going to push you along any faster then 4 one on one therapies a week would and that you also need to be doing activities you enjoy.

Your level of knowledge and understanding stuns me some days and it is because I see this that I know I can step back.  That when you are ready and when you have fought off more of the demons of your past and conquered more of your trust and relationship then others will see this.  Any little boy that has the level of manipulation you do definitely has more going on upstairs then he likes to show :)

Round three is on your time, at your pace, and on your terms..... for the most part.  As you continue to process the first two rounds, develop your language, and discover all that the world has to offer I know that you will come out on top.  Your passion, determination, and will power has made you the strongest fighter that I know.

Keep On Truckin Baby
Love
Mom

Lean On Me

Your friends may never realize the impact they have had on your life but they have helped you grow, develop, and overcome much of your past.  They put a smile on your face and spark in your eyes that no one else can.  I hear your sweet voice repeat their names daily and hear your contagious giggle when you see them or watch videos of you all together.  They have helped open your heart and make you the little boy you are today.

So Much More

When we moved here a last November I swore to you we were moving here for the school. That the school was what we had been looking for and it was your opportunity to shine.  I had all these expectations that the school could provide for you and for some reason thought that this one brick building was the key to your success.

Oh how wrong I was but yet how many doors have opened for us.  In reality, the school does not hold the answers or a magic key that unlocks all the potential that you hold.  In all honesty, the four walls that surround you at school are probably the last four walls we have to break down for you to finally break free.  

You are not quite there yet.  I still feel that you need a little more time before those final walls come down and before you allow the rest of the world to see the spark that I see daily.  The move to Ohio has given us so much more - so much that I didn't even know we needed.

Our relationship has grown.  I cannot even put into words our new levels of trust, love, acceptance, and friendship.  It is not that we didn't bond in VA and didn't grow together but we had patterns and routines that we were unable to overcome that were affecting our relationship.  Once we moved, those obstacles disappeared and everything was full speed ahead.  I look into your eyes and see your innocence, your desire to please, and most of all your love for those around you.  I see your passion for the future and your resistance to let the world around you hold you back.  I see the depths of the young man you are becoming and the insight you hold to your own future.

Our move has also opened up a book of resources that were never available to us before.  The intensity of your therapies and the commitment of your therapists to you was such as novel concept when we arrived.  No therapist here has turned their back on you due to behaviors or second guessed your ability because of your language.  Every therapist that works with you here has taken the time to get to know you for the little boy you are and build a strong relationship.  

Here we are not constantly on the go.  Life is slower and daily we can encounter new adventures or sit at home and be just as happy.  You have learned to enjoy a good movie, curl up with  some book, or play with your cars all over the house.  If given a choice these days you would rather stay home and play Candy Land or Memory as opposed to running errands.  

As we continue to unravel the tangled web that your life used to be we are adding a counselor to your team and more intensive psychiatric services this year.  With more language it is time that find ways to work through the emotional piece of your past.   You know that I am here as your safety net, that I am not going anywhere, and you are confident in yourself.  It is time to sweep out some of your cobwebs and allow yourself to grow emotionally.  As we clean house I know that you will continue to grow and thrive.  

This time next year, it is my goal for you that we will be transitioning back to public schools.  That we can finally take down those four walls that are holding you back and that you will have the foundational skills you need to be successful.  Next year it will be time for me to let you spread your wings that we have worked so hard on developing this past few years but for now, I get one more year of holding your hand through all the therapies, all the frustration, all the growth, and all the success.  

I can not tell you how proud I am of who you are today.  

Keep on Truckin' Baby

Love

Mom

The Voice

Who's voice is that I am hearing?  Who could possibly have such a sweet little voice and be talking so much lately?  You guessed it baby, it is you.  The language is amazing and each day I hear new words. You are imitating not only the adults around you but also your peers and the best part - now it is not only me that understands but also those around you.  I am not always needed as your translator anymore and honestly you are leaving the device aside and trying hard to find a way to communicate to those around you just as they communicate to you.  You use a variety of expressive language and when that does not work you add in some emotion and gestures to make sure everyone knows exactly what page you are on.

With this comes more personality and opinions.  I will happily hear them though and love see you continue to come out of your shell.  I have to smile when you talk back to me and not because I approve of this but because I had started to wonder if you would ever be able to.  In the past it was always as soon as you learned a new word of phrase you also lost one. It was as if you only had so much room to store the information and if you learned the word "applesauce" then you lose the word "please".  I have been scared lately that as we continue to push and expose you to more language and increase our demands, that you would lose so much progress we had made.  This fear has been unfounded though and you have even started to use phrases that you had once lost.  Additionally, you are combining a variety of two or three word phrases independently and using language nobody has directly taught you.

The other day at breakfast out with a friend I asked you to "use your fork." You looked at me and simple said in a firm voice "HAND" and went back to eating your eggs with your hands.  Needless to say I won in the long run but you did express your opinion.  At this same breakfast you also asked me "play fork" which you know we do not play with our silverware, you asked me to "play keys" which I usually would not do but since I did not know you knew either of these words spontaneously you did gain access to the car keys, and finally, as I paid the check, you looked at the server and said "I'll be back."  All of this not only occurred in the same time period but was also understood but those sitting with us and others.

We were playing at a little friends house the other day from your school.  This little buddy has a lot of language and one of his current goals is to raise his hand when asked a question and say "me."  The two of you were sitting at the table and his mom asked "who wants pizza?"  Your buddy raised his hand and said "me" clear as day.  So, you look at him, look at us, and spontaneously you imitate him and raise your hand and say "ME!"  Needless to say you were quickly given all the pizza you could have wanted.

Some of your favorite expressions include "whoa," "need help," "can you help," "do you wanna go," "I'll be back," "more sprite," and "move."  You have so much more you are saying and so much more you want to say to the world around you.  By the end of summer we will come up with a plan on how your device will be used for next school year as your motivation is to use your own words but we also know the device is what has helped you make these gains and that the device still has language that you are not yet producing spontaneously or can help others understand you.

All you need is a little more time.

Keep on Truckin Baby
Love
Mom

It's Been Awhile

I am not sure where I have been.  Your school year has come to an end and we are off and running for summer.  We have packed your schedule with one on one therapies that vary from Occupational Therapy, Physical Therapy, Speech Therapy, Music/Device group, AAC group, BCBA, and then also behavior therapy sessions that are in home.  That consumes most of our mornings Monday through Thursday and I can see how all of the pieces are starting to form together and help you continue to make the progress you need.

For awhile now we have not participated in Occupational Therapy as it was just icing on the cake.  It was the therapy that was one too many and the most aversive.  We worked hard to make accommodations and modifications for you that allowed you to forgo on the fine motor skills and focus more on following directions, your language, and simply finding your way in life.  This summer though it was time to tie in that remaining piece and honestly you have done well.  It was the right time.  This therapy is also allowing us to finally look at some of the visual aspects and the possible need for more intensive therapy for you to learn how to track and learn to use your vision (which is perfect by the way) appropriately in order to access your environment.  You do not track at all, you have a hard time following objects, and your depth perception lets just say is less then desired.  Hopefully as we add in this remaining aspect the pieces will continue to slide into place.

We have had a lot of changes recently and it could be the other reason I have been a little quiet, not quite sure where to turn next or if I am making the right decisions for you.  Your need for sleep towards the end of the school year was high and I was worried.  You were sleeping upwards of 15-17 hours some days and your behaviors were hit or miss.  We went to the doctor to see what might be going on and rule out all facts.  Needless to say your little body was turned upside down.  It ends up one of your medications had gone to toxic levels within your system and had also called your TSH (thyroid) levels to almost double.  So, after an ER visit, numerous blood draws, and a scared momma we have pulled you from all medications (of course under doctor guidance and recommendations).  Ummmm... yeah.... first time since August of 2010 you have been without any sort of medication and needless to say your body has needed time to readjust.

Coming off the medications you have a spark back in your eyes, I see more of your personality, and you no longer need 15 hours of sleep a day.  I am not exactly sure what to do with you yet for an extra three hours every night before bed as you have gone from a 6:00 pm to a 9:00 pm bedtime which you love!  Your one on one therapies have continued to remain good and you are pushing through and doing the best of your ability.  This has shown us that we need to start from scratch.  Due to your impulsivity which includes self-injurious behaviors we still need to look at a low level ADHD medication but I am hoping, lets say praying, that we will not need to look at mood stabilizers again and you can feel yourself.

With this though, you are showing more and more signs of PTSD from your past.  Given that you have no medications to help filter and help with the impulses, and you have so much more language I am seeing and hearing so much more that we need to slowly work through.  The other day you were slapping yourself across your face and saying "bad boy" (the word bad is never used in our home and never a word you have heard since you arrived in my arms).  Then, anytime you become anxious you start pulling your arms and saying "no, no hit... no bathroom... no, no, no... no pee poof... no bathroom.. no" - this occurs even when the bathroom is never mentioned or a thought to others.  Given that a great deal of your abuse was in the bathroom I know you are struggling to work through the anxiety and you need another outlet.  You are also having a very hard time again in closed rooms or when individuals you are not familiar with close doors.

Next on our list will be a very good play therapist.  You still do not have all of the language you will need to actively participate in this therapy but you can start to build a relationship and have a comfort zone for when you are ready to let it all out.  Additionally, I am starting to the application process to get you a therapy dog which would be specifically trained to help you in situations when you are overwhelmed. We have a very long road ahead of us but we have made some major gains lately, learned valuable pieces of information, and I am excited to see what tomorrow brings us.

Keep on Truckin Baby
Love
Mom