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

I'm Listening

As much as you grow, I grow.  I am trying so hard to listen these days and to actually process what I hear.  It used to be that I forced you through life.  This was not a bad thing but given your past you had to experience new things, you had to learn, grow, and open your mind to what was going on around you.  We did not have options of going to the store, putting our shoes on, or eating a meal.  These were activities you had to do in order to grow and develop.

Today though, these are not our battles.  You will happily come to me with your shoes when you are bored at home.  I will find you changed into your bathing suite when you want to go swimming, and your love for food grows daily.  I do not know any other child who's favorite meal is clam linguini :)  So today, you do have choices.  You do have a say in what activities we do and to an extent how long we stay at said activities.

Baseball has not been your favorite sport. It has it highlights and its moments but honestly,  you would prefer not to go every week.  I have taken you for a little over a month now to make sure you understood, that you realized what was going on, and that you were allowed to try to form bonds with those on your team.  Reality though, we left today.  We went, we tried, you told me "go" and we left.  I am listening.  I am realizing that your interests are different and that playing baseball for an hour will not make or break our day in the long run.  You love lacrosse and ran onto the field each week last season.  I see the difference with baseball and I see that we can find other activities that would be a better fit for you.

As your parent and being a parent of special needs child I honestly think your interest varies depending on the peers.  You are so social and interactive that you prefer to interact and play sports with typically developing peers.  A little secret though, you can't keep up.  We can probably get away with one or two more lacrosse camps which you LOVE but your peers are only getting older.  They are growing and developing as they should and you still need time.  I wish I could find a way for you to be the "bat boy" on a typical baseball team, or the cheering squad on the bleachers of a hockey team, but those are just not options.  It breaks my heart that you cannot keep up as hard as you try but I believe that you will find your nitch.

The more you communicate (appropriately) the more I am listening. The more I am handing over control, allowing you to spread you wings, and knowing that life will go on.  The more I am realizing that you are becoming an independent, social, and well adjusted little man who has an opinion and has a voice that deserves to be heard.

Keep On Truckin Baby
Love
Mom

Caught In Two Worlds

I know I shouldn't get as frustrated as I do with you sometimes.  I know that every time you see me start to get agitated you start to shut down which makes everything spiral out of control even more.  I also know that you can't help it all the time and it is not necessarily a decision you are purposefully making.

You are caught between two worlds.  Your voice is starting to come through but it is not reliable yet.  You still need prompting and it is not understandable by all.  You confuse some of your words and other times struggle to come up with the right ones.  You still use your device but because it hasn't been pushed as much you are back to using only one word phrases and not even uses those as well as you used to.  The device has been great at augmenting your communication but right now it is a tough patch.  You need the device, you have to use the device, and we will have to continue to push it, often times against your better judgement.  I do not want you to be reliant upon another person to come up with the words you need, you need to learn to find them yourself whether it be on the device or verbally.

With the balancing act of language you are doing, my frustration rises.  I want it to be smoother and I don't want to have to remind you of all the things you could be saying or you could be doing.

On top of this, your academics are still killing me. You can be so focused and show all of your skills one day and the next you are a deer in the headlights just guessing and reaching for answers, not even looking at what your options are.  You thought I was frustrated over language, oh, this is a whole new level.   I don't know what causes it.  I don't know why one day you can remember all your shapes, track the words in a book, label pictures, identify your numbers, and count objects - but then less then 24 hours later it is as if I am speaking a different language and you have never seen any of the items.

We have tried numerous strategies, we work on it for several hours per day, and yet the consistency is still not there.  As soon as you seem to grab a hold of something it is gone in a fleeting moment.  Life skills are a whole other story all together and something I choose not to think about because many days I would just give up.

I don't know.  Maybe reality is starting to sink in of where you really are and where you will be in the future.  Maybe I am starting to realize that many of these concepts are so far out of reach for you.  The problem is if we put the concepts on hold that you are struggling with, we wouldn't be left with anything.  I love you for the child you are, for your sweet smile, your giggle, and passion for life.  I will always love you no matter what skills you decide to show the world but we have to find a better balance.

The frustration and tension that builds between us because of the lack of ability, or lack of trust to show the ability is getting to be too much.  We need to find more strengths, whatever those might be, and highlight them more throughout the day.  We can't keep going at this rate as the disappointment for both of us is to great.  It is not disappointment in the little boy that you are but in my frustration, that I care to much about what others think, and that I want the sun, moon, and stars for you but you seem to be happy with the grass and trees.

I love you baby -
Mom

Snowball Effect

So once a child starts to develop language it is like a snowball effect.  About the age of two years the words just start to flow and then it is nonstop.  Before this age parents are always asking their children to move and speak more but once a child hits this developmental stage parents are telling them to be quiet and sit down.

Well, lets just say I am telling you "shhh" and to chill more ofen then not these days and I love it!  As I have said, you have recently decided to start to explode with your language.  Your device is being used less and you are able to imitate almost any word asked of you.  I am so excited for this next step in our lives and to hear your sweet voice - but lets be honest, I am not sure the world is ready for you yet!

Here is a video of when I met you two years ago.  You were in school waiting for your bus to arrive and we could hear and see your emotion, inntonation, and intent.  You had something to say and were facinated by whatever was going on around you.  This was the first time I had really heard "your language" and all the passion you had with it.

We still hear this "language" today but not nearly as much.  You are much more likely to be telling me "off"  when you do not want to get up in the morning or "no" that you don't want something.  I swear every hour you are asking me "eat?" followed by asking for "cookies" or "candy."  You joint attention and overall meaning has grown so much.  The videos to follow show the depth to how hard you trying and also the games you are playing.

So obviously, this is a combination of device and verbal which is huge!  Six months ago you were not repeating the device in this fashion. You were not watching my mouth and you sure as hell were not talking :) 

Today your private speech therapist took a chance and tried to administer the Preschool Language Assessment.  This is a standarized test which you have never performed on.  You hate on demand situations and buck the system as much as possible.  When you started with her in December I think you maybe answered three or four questions tops.  Well, today you did it.  You happily engaged and participated to the best of your ability. I am more pleased that you engaged in the assessment then actually caring what the scores were!

 However, you did score at rougly the 2 year old range.  Many people would hear this and be taken aback.  How could I be so proud even though you are still 6 years shy of where you should be?  Let me say though, how could I not be proud?? You have grown leaps and bounds.  In the past 6 months you have gained almost 12 months of language development and the snowball effect is starting to happen.  The look on your face when you say a new word is priceless.  The smile in your eyes and sense of pride you have as you embark on this new state is amazing and I would not miss it for the world.

Keep On Truckin Baby
Love

Mom

Are You Deaf?

This is a question that is asked to me about you quite often.  People want to know, "Is he deaf?" "Is he hard of hearing?" "Can he hear me?"  They are not asking me this question because of your lack of expressive language but because of your actions.  Recently I am starting to notice more behaviors caused by your past and they are being noticed by those around us also.

For the first 3.5 years of your life you were locked in a room.  In this room, as I have told you, and I am very confident that you remember, was also one of your sisters.  As you, she has since changed her name but I will refer to her as "G" to protect her privacy.  "G" was deaf and blind in one eye.  This was caused by CMV virus which causes lesions on the brain and can progressively become worse as a child ages.  Honestly, "G" took more abuse then you did and everyone is pretty sure that she was also sexually abused.  I had the honor of meeting her when I met you in Idaho and also spending time with her adoptive family.  She could not have had a better match for a family with the most unique, understanding, and supportive parenting possible.  "G" has made great strides in her life and last I heard was performing near grade level academically and her social/emotional skills had grown leaps and bounds.

The importance of all this though is the three and half years you two spent together in a room.  She was the most physical and social contact you received from what I can see and was one of the largest impacts on the early years of your development.  But, given that she herself could not communicate functionally and she could not hear you, how did you the two of you communicate?  How did the two of you function in that room?

Your behaviors today are starting to answer some of these questions.  We have always known you have had a passion for music but it goes much deeper then that.  You need to feel the beat.  You need to feel the music and to have it become a part of you.  When we walk into stores, restaurants, outside parks, etc. you can find the speakers in a matter of seconds.  You put your hand as close as possible to feel the vibrations and allow them to move through you.  I am sure that whatever was going on outside of your locked door you could feel and sense.  That your closet contact with those around you was either putting your ear or hands on the door or laying on the floor to feel the vibrations of their party. "G" helped to teach you this.  Since she had lost her sense of hearing her other senses were stronger and this had to be her way of connecting. This is a learned behavior and a behavior of survival.  A behavior that helped you, and "G", hold on to the few connections you had left.

Even today, music is a source for calming and your security blanket.  We have your iPod with us and available at all times.  You know when you need it and how to ask for it.  When you need it, you turn the volume up and push the headphones into your ears, you have to be able to feel it.  It is as if you need to become one with the music, disconnect from whatever is going on around you, and be able to find the sense of release that it provides you.

When we are walking around and you are unsure of sounds or if fear starts to set in, both hands go to your ears.  You pinch them to cover the noise but then you move your hands back and forth.  You are playing with the sound, the vibrations, and the rhythm.  You are using the coping skills you had to survive on for so many years.

Your language has exploded over the last few weeks but with this there are more learned behaviors.  You are intent on watching the faces and mouths of those that are talking. You are now able to imitate almost any word as long as you can watch the speaker to see how they formed it.  I have to be careful when talking to you, I have to make sure I speak slowly and that I am on your level so you can watch my mouth.  If you cannot see my face and watch my mouth and expressions, you do not respond.  This is not because you cannot hear me but because you are relaying on your other senses just as "G" did.

Trust me, I have had your hearing checked twice and yours is absolutely perfect.  We will continue to work through these moments of your past.  I had prayed and hoped that when I adopted you your cognitive level and age were too young for you to remember the abuse and neglect of your past.  This is not the case though.  As you continue to develop and acquire skills we have more moments we need to work through.  We have more behaviors and memories that impact the little boy you are today.  Together though we will conquer.  Together we will find a balance.  I am learning to allow you the time you need and that I will never understand exactly what your past held.  You may never be able to tell me all this.  What you are learning though is that I am here for you and that it is safe for you to show me these behaviors.

Keep On Truckin
Love
Mom