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
Tuesday, February 28, 2012
Monday, February 27, 2012
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
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
Monday, February 20, 2012
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
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
Sunday, February 19, 2012
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
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
Saturday, February 11, 2012
The Door Is Unlocked - All You Have To Do Is Open It
I feel that when we moved to Ohio we unlocked another door for you. Even though I complain and have my moments it has provided so many opportunities, but you have to be the one to push that door open. You need to be the one to decide when the time is right and walk through the door which will open to so much more.
Today, you gave it a little nudge. You took a deep breath and pushed through your day without a care in the world and without wondering what others would think. You showed your personality, relaxed around the house, allowed time for us to cuddle, and continued to use your device with ease. You talked to me using your own words, then some in your own language, and even more with your device, you talked to people at lunch and you played a variety of new games.
What continued to shock me the most was the flow and ease of your device usage this weekend and you decided it was time to put together two and three word sentences. These included, but were not limited to, "give help please," "more candy please," "help me, " "give me," "eat candy please," and the list went on. These are all words you had been using independently but decided today would be the day to combine them. As a typically developing child grows parents always mark these moments and remember first words, sentences, etc. For us, you might be seven and a little late but that just makes it all that more special.
The best part of the day though was when I called you over for dinner, served you the gluten free version of hamburger helper, and you just looked at me for a minute - turned to your device and said "stop" .... "don't give please!" I had to laugh and honor this request - also question for a second if I was sure I wanted you to have that voice :) - and let you pick what you ate. Not the most well rounded meal but you picked strawberries, cheese, and pepperoni.
I cannot wait for you to feel safe enough and secure enough at school and other environments to show them these skills. I know you enjoy school now but you are still not sure you want them to see what you are capable of. I am sure they think I am a crazy parent that says you do so much more then you are doing but I also know you and I have worked very hard for the last two years to get to where we are today.
Building our relationship, trust, and bond has not been the easiest. We have had our ups and downs and moments of insecurity, but all of that seems to be fading. Everyday I look at you and it reminds me of how lucky I am to have you as my son, that you have taught me so much and continue to teach me lessons everyday.
Keep on Truckin Baby
Love
Mom
Saturday, February 4, 2012
Voice
Every parent loves to hear the sound of their child's voice. Their first words, their giggles, their attempts to sing, and the list goes on. For some families though they never get to hear this. They wish and pray and hope that one day their child will say their first word but yet that day never comes. It is heartbreaking and no one can truly understand how these parents feel unless they too have experienced this emotional roller coaster.
I am blessed in that I have heard your voice. I have heard the sweet "no's," your attempts at talking and at times of your choosing a variety of other words to express your needs and wants. With this though, your voice has a lot of limitations that keep you from being able to communicate with the world around you which leads to a multitude of other deficits. Sometimes I feel that these limitations are due to your severe speech and language delays and other times I feel that it is due to your emotions. That a wall is built around you and you will not allow others to hear your voice unless you fully trust them.
So, for us, we have adopted another "voice" in our home by the name of "Kenny." Kenny is a computer generated child's voice on your communication device. I know I have spoken about your device before but I am not sure I have ever really explained to you the importance of it or how it really is, in a sense, a member of our family. Kenny is your "voice," your means of communication, in a way, your best friend, and most importantly a way for your to interact with the world around you. School calls the device your "talker," I often just refer to it as your "device," but it is so much more. As much as I love hearing your sweet voice I have also grown to love to hear "Kenny" and know that it is laying groundwork for more doors to open to your future.
Again and again I have said that we moved to Ohio for you to learn to use the device more functionally. To have you in an environment where everyone was trained in the usage of the device, where you would see other children using one, and where you would be accepted for using your "voice." You demonstrated to me this weekend that all of these pieces are coming together and the progress we have seen since January is amazing. You have finally discovered how powerful the "voice of Kenny" is and how much of an amazing tool it can be. You expanded your usage from making simple requests for your needs and wants to labeling pictures, commenting, and beginning literacy skills this weekend. I am in complete awe and amazement and so proud of all you are doing.
I know there is still an emotional piece connected to using your "voice." It doesn't matter if it is through Kenny or through your own words, you are hesitant to use either around new people or in new environments. I know this will decrease as your confidence grows and you build trust in more people that are around us but for now, at home where you feel the most safe and secure, you are showing me that you are taking in so much more of what is going on around you then we ever thought.
Here are a few videos of us working hard on teaching you a variety of different skills to use with your voice. How to protest, request, comment, read, gain my attention, etc. If you have come this far in a month I cannot wait to hear all you have to say in the near future.
(filling in words from a classic book)
(learning to make simple requests)
(early academic skills)
(learning that you can say no - you even threw in a please :)
Keep on Truckin Baby
Love
Mom
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