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
Saturday, June 16, 2012
Friday, June 15, 2012
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
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
Monday, June 4, 2012
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
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.
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
Sunday, June 3, 2012
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
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
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