Changing Society

So maybe not all of society but we are starting with those around us. It is tough for you when we are public sometimes. Anxiety takes over, you become overwhelmed, and you know something is different with you. You are aware enough to know that using a device is different, that you do not have all the skills other little boys your age do, and that as hard as you try, you will not be accepted by everyone. I try to keep everything consistent though. You have the same expectations in public as you do when we are at home and you and I work very hard together to slow down and allow you to experience what is going on around on. With this, we are not only continuing to shape the little man you are becoming but we are also shaping the lives of those around us and allowing them to experience a whole other world to what many of them are accustomed to.

Because you and I as a family have "adopted" Kenny, the speaking voice on your device, as your voice it is just a part of our day and I often do not think twice about it when we are public. I find opportunities for us to practice with it but when we are just walking around a mall, at a park, or you are beat boxing away while carrying it, I forget that it stands out and draws the attention of others. You however though do not miss a single glance at it, especially from other children. You become very possessive and your anxiety goes through the roof if you feel they will take it. You hold it close, say "no" and retreat away. It has taken a lot of work for you to trust that no one will take it away from you and that it is "yours" and they are your words that no one can take. I try to find different ways to explain to other children that the device is not a toy and you use it to talk but it is actually more confusing to explain it to adults. With this though, people are starting to understand. People in our community are becoming more accepting, they are becoming patient when you need time to navigate the device, and they are understanding when you just can't find the right word.

This weekend when we were at the pool a group of children were very persistent at getting you to play with them. They needed a fourth for their game. I was watching from afar, as I think it is vital you start to experience life without me standing by your side, and one of the boys looked at me and asked "can he talk to me." I simply replied that you couldn't while in the water because your computer couldn't get wet." I then waited for the confused look and list of questions, but it never came. The little boy simply said "ok" and you all went back to playing. This is progress and acceptance.



Following this while playing at an indoor play area in the mall this weekend you wanted to carry your device around with you. I always worry about it being damaged but figured you had every right to have it with you. You ran up to two kids who were driving the space shuttle, went to your device and said "turn." The child surprisingly gave you a turn and as you sat their driving you went in and labeled it an "airplane" to the other little one sitting next to you. This is a huge amount of growth for you and you are finally accepting that the device is your voice in all environments and with anyone who you may encounter.



Honestly, we need this level of patience and acceptance from the outside world but more importantly society needs the lessons you are teaching them. Just because you do not express yourself as another 7 year old might and because you do not necessarily play sports with the same level of coordination does not mean you don't have the same drive, passion, and playfulness of the child standing next to you. It does not mean that you do not want to have friends, run around with your peers, and cause trouble just as the other children do. You are not alone in this battle with shaping those around you and your persistence, determination, and personality will make a difference.

Keep on Truckin Baby
Love
Mom

Maybe We Should Walk Backwards

One step forward, three steps back. Two steps forward, six steps back. And the pattern continues. This is not always a bad thing. Sometimes we need to go backwards in order to fill in the gaps. Sometimes when you move up the ladder we discover that the space in between the steps is a little bigger then we thought and we need to fill it in. We usually end up working a balancing act to figure out where we should push, how much, and then how much do we allow you slip in order to catch up in other areas of development.

When you first arrived home your progress was slow and steady but it seemed to follow a developmental pattern. Maybe that was because you had so many areas of need that no matter what foot you put forward it was going to be a step in the right direction and since you really didn't have any skills we had to build the foundation. I mean seriously, I was telling someone today that you had never even used a spoon functionally before you arrived in my arms, let alone a pencil. So your first year home was really just like your first year of life and we pushed so many emotions and basic living skills. There was no where to move backwards to because you were already at the bottom.

This year has been a little different though. We have had a lot of ups and a few downs but your downs have been us needing to re-evaluate our focus, demands, expectations, and life. Our downs also remind me that you still have so much of your past to work through and a part of me fears the day that you remember or that you are willing to share. With any fear though I do have to wonder. I wonder what exactly happened in your early years. Don't get me wrong I know you were abused, locked in a room, no social interaction, exposed to meth everyday until you were almost four, and the list goes on but what I don't know is all the pieces to that. In reality it does not really matter but it does help me understand some of your fears, why some skills take longer then others to master, and how you pick those that you trust.

Recently I have seen a few behaviors that I must assume are associated with your past. You are afraid of any industrial size fan such as in warehouse type buildings (costco) or parking garages. You look up with terror in your eyes, begin to cry, and call for me. You also have a hard time walking through entry ways that have a double set of doors (walk through one set into a small opening and then having to walk through another set to actually enter). I know the room you were locked in was in a lower level of a house. Do these walk ways remind you of being taken down there? Was there a window fan or a larger fan that you remember the sound of? You rely on your sense of hearing far more then most children your age. It is not only your passion but a survival skill for you. What other sounds will be a trigger for you in the future?

I feel that as we continue to open doors for you and push skills it is also allowing for more memories. It is allowing for you to comprehend a little more and realize a little more that the life you used to have was not really a life. When you hear adults get upset with other children you start to cry sometimes and you think that you are in trouble. You want to comfort children who have been hurt and you read people's emotions much better then most adults do.

So, each step forward really does equal two steps backward for you. It is as if we are adding skills, behaviors, and language while we are walking forward but that you are walking backwards through your past in order to process the emotions. At some point we will need to find a way for these two paths to be walked together but right now you and I just take each new day as an adventure, stay on our toes, and I remind myself that our priorities could change on a dime.

Keep on Truckin Baby
Love
Mom

"Come"

I am not sure we all think of how much meaning this word has. We use it daily when we are talking to people and just naturally expect others to listen to us. For you, each new word takes time. We have to model it, teach it, practice it, generalize it, and then hope that you will learn to use the word independently. When you do, we throw a party and if you do not, we take any opportunity to go through all the steps again and hope it starts to sink in.

Tonight I put you to bed. Rubbed your head for a moment, gave you your kiss, and went on downstairs. Your device is always next to your bed as I hate to ever take your voice away. A few moments later I heard your adopted voice saying "come." Yes! It had sunk in. Another word had clicked and you found a means to extend your bedtime and have me come back to you. Of course I did not hesitate to run up the stairs, throw a little party for you, and then proceed to sit with you until you fell asleep. A small victory for us tonight and hopefully one you will not forget!

Keep on Truckin Baby
Love
Mom