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

Moving Forward

I still have this over hanging feeling that something is not right and I am still "down" on what I see for the big picture for you right now, but I have to keep moving forward. We have to keep pushing and seeing what each new day holds for us. I know I will have my ups and downs and I have always known that life would not always be easy for us. I think my own emotions just catch me off guard sometimes and I never know if I am grieving, accepting, or just plain and simply angry.

With all this though, we are taking more steps forward. At the end of March you will have a full ATS (assistive technology) evaluation. The individual has a strong background in education and ABA will come to the house and conduct an assessment to see in what ways technology can be used to help you with your educational goals and and also community and self help skills. I am not introducing this to school yet as you are not ready there but at home you are and we need to keep pushing forward. You might not be showing your skills in other environments but you are to me and if I do not keep the momentum moving I would be failing you.

Some of the items she could suggest would be iPad and computer programs, adapted keyboards and mice for the computer, audio programs and so on. It will be very interesting to see her input after only a few short hours of working with you. I have made it very clear that I do not want to even consider changing your communication device but instead look at all the additional options that might be available.

So for now, this is what I can do for you. This is our next step and another intervention to help you reach your full potential.

I also have a goal for you. I have never really set a timeline on your skills but right now I think it is what we need. We need to set a goal and work towards accomplishment. The feeling we will both have when you accomplish this goal will be huge. You take so much pride these days at home showing your ability and now, I am challenging you to thrive. I am challenging you to learn 200 vocabulary words in the next 30 days. I will give you a little and count the 31 you learned last week towards this 200 so we only have a few more left to go :) I know you can do this and when you do a whole new set of doors will be opened

Keep on Truckin Baby because we have a lot more to conquer

Love
Mom

Defeated

Its not you, its me. For some reason I feel completely overwhelmed and defeated with your program, progress, and ability today. I know there is really no reason to feel this way. That you are making progress on a daily basis and I am so very proud of how far you have come, but today is one of those days that I just want to throw in the towel.

I had a meeting with the BCBA and classroom supervisor at your school today. For the last three weeks you have been 100% in all group activities (no one on one time) and following the classroom schedule just as everyone else per my request. I made this decision when I last met with your school team because I did not feel the one on one program was challenging to you nor did I feel it would prepare you to leave the self-contained environment in the future. Today though, prepared with data, it was shown to me that you are not ready for the small groups. That you are missing so many of your foundational skills and still playing games with staff as opposed to attending to task, that your behaviors have increased and they are saying you are not able to attain skills in a small group. This breaks my heart because I know that you are. When you come home at night you do show me skills that were taught in school during the day and you generalize it to other environments but unfortunately you are not comfortable showing them. It amazes me that you take in so much when no one thinks you are listening but that you refuse to show it to anyone other then me. I know I should count my blessings that you even show me these days as you were not even doing that a few short months ago but I am so defeated right now with the big picture.

My goal for you Bryson is that we are only at Helping Hands for a few short years and that has been my goal since I made the decision for us to move here. You thrive off of your peers and it was a very difficult decision to pull you from an environment where although you were not learning you had friends, birthday parties, and opportunities to engage socially outside of school. That was your saving grace in my mind and I could forget about some of the academic struggles because you did so well with your peers. Now though, I don't have this to look at. You do not enjoy the boys in your classroom and I am struggling to find you a group of friends outside of school because our community does not really have any. So, the focus goes back to your academics and I can only push this so hard. I do not want you to lose the concept of friendship, I want to find play dates for you, and there needs to be a happy balance.

So, where does that leave us tonight - I really don't know. I know that I need to let you be Bryson. To take a deep breath, let time settle in and just continue to enjoy life with you. Unfortunately, God is still working teaching me patience and I am still learning how to do this. I will continue to celebrate in your accomplishments with you, be your biggest supporter, and provide you with the wings you need to soar.


Keep on Truckin Baby
Love
Mom

Another Day - Another Dollar

Unfortunately, even thought it is a holiday I had to work. Your school, following in line with most, was closed for the day. Since we have only been here a few short months we don't have the support team of friends, family, and therapists we did in Virginia to call upon to set up a full day schedule for you at home. So, we had to take another risk.

I dropped you off this morning at Mango's Place - a drop in daycare near our house. I gave them very little information on your needs except that you need to be made to go the bathroom and you would need some coaxing for that to happen. I then showed them your device in passing and said you knew had to use if you wanted something bad enough. As always, I then held my breath, and quickly headed to work. My phone stayed on me all day, awaiting the phone call that something had happened or there were just to many kids to meet your needs, and it never happened.

Now, I do have to give you some credit. Nobody has ever called me to come pick you up. You have had your moments before at camp but I usually take you to environments where you can blend in a little more. Where there are not really high level demands and you can do activities like swimming. This was more of an enclosed room with 24 children where you had to share and could not go and hide anywhere as it was a circle shape :) I also have to say that I have always said you can do it and that you do not need a special environment or specialized teachers for a camp or daycare setting and that you thrive off your peers. You proved this point to everyone today.

When I picked you up this afternoon you were still wearing the clothes I sent you in (yes, this means no accident). All the staff said you did an awesome job, and most importantly you were happy. Staff said you played with all the children. That every time a peer came up to you you would use your device and tell them your name. That you also used it to express when you were hungry and thirsty and most importantly you are allowed back! This is huge as it allows us a safe place when you have your spring break, teacher workdays, or mommy simply needs a little break this summer.

One reason all of this means so much is I remember taking you to a drop in daycare when we lived in VA. For some reason we just didn't have any other options that day and so I dropped you off, still in diapers, and not medicated. They did not call me to come pick you up either but when I did finally make it back (I believe it was like three hours as opposed to the 10 today) they basically told me you were a handful and it is was tough for the children to listen when you didn't. Needless to say we did not venture back to them.

It is these small moments though that remind me of how far you have come. It is hard for to remember sometimes what it was like when you first came home. Don't get me wrong, I remember the highlights but you have grown and changed so much that I sometimes lose perspective of all of it and need moments like today to realize your social/emotional growth. One of the most important aspects of the little man you are becoming.

Keep on Truckin
Love
Mom

There's A Difference

There is a huge difference between believing that you are capable of doing something but then seeing you do it. I have always sworn that you are able to do so much more then you show, that there is a wall keeping you from showing us what you really know, and that I have to believe there is a reason to keep pushing academics, language, and social so hard.

I will admit though, there are days when I have to wonder if my expectations are really too high. That yes indeed there are other reasons you are unable to learn and we should change or focus onto more life skills, or that I should start looking at alternative learning options for you - ones that do not emphasize language and academics. I have to wonder sometimes if I am pushing for no reason and that I need to meet you where you at. Let me tell you, if I did that I know for a fact our life would be easier. But I also know for a fact that if I did that, I would not be allowing you to reach your full potential, to thrive, and to continue to show pieces of your personality everyday. I mean, who knew when I adopted you just shy of two years ago you would love being the center of attention walking down the middle of the mall? Yes, that is you in the green sunglasses, hat on backwards, puffy vest, and a little dog thrown in just for fun.



Recently, I have finally been able to take a deep breath and realize my expectations are not to high. It is coming faster and stronger on some days as opposed to others but everything we have worked so hard on is finally starting to click. All of the skills that your therapy team worked endless hours on in VA are coming a little easier to you. You have started to relax, allow yourself to make mistakes, and most importantly... you are now allowing yourself to take risks! I am seeing you look for new adventures in your social skills, academics, language, and life skills everyday.

Today, we went over to mall so you could play indoors for awhile (honestly in hopes that you would take a little nap later :) You started with your "silent stalker"routine to a group of older boys who were playing tag. For about the first five minutes you kept checking back in with me but then I watched you go off on your own. The boys did not really notice that you had joined their game at first but then you went right up to one, smiled, tag him on the chest and ran away. I smiled to myself - watched you glow with pride for a moment - and the game continued. It is these moments that I know you are thriving for more socially. That I need to continue to find social opportunities for you where you are accepted and pushed by peers.

School has been working on your numbers and one to one correspondence. You have needed a lot of help with this just as you have in the past. Today though we sat down together, device set up in front of you and a little candy on the side to motivate, and you counted! You demonstrated the concept of one to correspondence for numbers 1 through 3. Yes, a baby step, but a huge step in the right direction. Again, it is in this moment that I know you are thriving for more academically. That I need to continue to push your academic concepts and the progress will come.


We have been working on expanding your device usage to labeling pictures. As we increase your vocabulary you have more items you can talk about which will ultimately help expand your language and conversational skills. I have taped up pictures all over the house at your level to increase your interest in talking about a variety of things. This weekend we were able to share a few moments talking about some of these pictures and you used your device to label a few. In this moment I was able to see your interest in animals. A few months ago you did not have the concept, or maybe just wouldn't show it, of labeling but today, you showed me I need to continue to push and your passions will help motivate the direction we move for the future.

So, the long and short of it baby, it really does help mommy to see you do these things. I am so very proud of you for all you continue to do while still working through moments from your past. This week was also a week of nightmares, sleep disruptions, mood swings, bathroom accidents, and some behavioral difficulties - but you have pulled through. You have taken a deep breath and allowed yourself to move forward. You are continuing to grow and I am so lucky to have you as my son as we continue on this adventure together.




Keep on Truckin Baby
Love
Mom