Thursday, December 29, 2011
Light Of My Life
Every morning when I wake up I never know exactly what our day will bring. I never really know what demons you might have to experience and if it will be a day of growing pains or a day of healing. Lately though, the days of healing have been coming more often. I still hold my breath every morning when I go into your room to start our day but since we have moved I have been able to let out my breath with laughter as you open your eyes with a spark and a giggle I wish I should capture forever.
Just A Little "Special"
Yup, you would be the proud owner of these brand new orthotics! Lets just say your personality is shining through more and more everyday.
Thursday, December 8, 2011
Special Education Heaven
Well, maybe not heaven to the child but any parents dream. When we choose Helping Hands for you the primary reason was that they are a LAMP center for excellence. LAMP is language acquisition through motor planning and is a systematic way of teaching a child language through the use of an AAC device. Given this was our largest argument in the public schools it was a major reason for us to choose this school as your new home. This system is not only completely changing the way you use your device but it is also undoing everything I thought I knew about how to teach you language.
This has increased my frustration as I have had to hand over all control, hand over your programming, and finally put trust in someone else to see the potential and to guide you in the right direction. Anyone who knows me baby knows I hate not only not being in control but not understanding what is going on. I feel lost right now in trying to support what the school is doing as honestly don't know what they do everyday and how you are acting. I know that you are being successful and that they fully know what they are doing, I am just not used to standing back on the sidelines and watching but I guess we are both growing right now, you are growing your wings so that later you can use them, and I am learning to cheer you on from the sidelines instead of being the one in control.
With handing over your programming though and all of the services Helping Hands has to offer, we have stepped into special education heaven. In the public school system you received speech therapy 2x per week and then had occupational therapy and physical therapy on a consultation basis. Not nearly enough in services but the most we could get. Now, this has changed drastically. You are receiving four days per week of speech therapy, three days per week of physical therapy, one day per week of music therapy, and two days per week of occupational therapy. That is just your one on one therapy sessions and does not include that you also receive each of these services in a group setting one time per week with your class. It is with these services that we round out your therapy needs and are "attacking" all domains at once. I am excited to see the changes over the next year with this consistency.
Your physical therapist has also recommended that you go back to orthotics. You do not mind wearing them at all, it is more of an appearance thing as why I have a slight problem with you in them but I will move past this. The new orthotics for you will cover your foot, ankle, and come about 10 inches up your leg (so they will end right below your knee). When you had your previous ones they were much smaller and only came right above the ankle. For that reason I only allowed you to have them in white as they blended in with your socks and we could hide them. This time though, there will be no way to hide them so I let you pick the design and colors. In just a few weeks you will have new black orthotics with white skull and crossbones on them with red padding and red velcro. Your choice, and at least it is a design that will grow with you since we will be in these for awhile! Below is a picture of the casts that were done this week to have them made.
Love you lil' man
Mom
This has increased my frustration as I have had to hand over all control, hand over your programming, and finally put trust in someone else to see the potential and to guide you in the right direction. Anyone who knows me baby knows I hate not only not being in control but not understanding what is going on. I feel lost right now in trying to support what the school is doing as honestly don't know what they do everyday and how you are acting. I know that you are being successful and that they fully know what they are doing, I am just not used to standing back on the sidelines and watching but I guess we are both growing right now, you are growing your wings so that later you can use them, and I am learning to cheer you on from the sidelines instead of being the one in control.
With handing over your programming though and all of the services Helping Hands has to offer, we have stepped into special education heaven. In the public school system you received speech therapy 2x per week and then had occupational therapy and physical therapy on a consultation basis. Not nearly enough in services but the most we could get. Now, this has changed drastically. You are receiving four days per week of speech therapy, three days per week of physical therapy, one day per week of music therapy, and two days per week of occupational therapy. That is just your one on one therapy sessions and does not include that you also receive each of these services in a group setting one time per week with your class. It is with these services that we round out your therapy needs and are "attacking" all domains at once. I am excited to see the changes over the next year with this consistency.
Your physical therapist has also recommended that you go back to orthotics. You do not mind wearing them at all, it is more of an appearance thing as why I have a slight problem with you in them but I will move past this. The new orthotics for you will cover your foot, ankle, and come about 10 inches up your leg (so they will end right below your knee). When you had your previous ones they were much smaller and only came right above the ankle. For that reason I only allowed you to have them in white as they blended in with your socks and we could hide them. This time though, there will be no way to hide them so I let you pick the design and colors. In just a few weeks you will have new black orthotics with white skull and crossbones on them with red padding and red velcro. Your choice, and at least it is a design that will grow with you since we will be in these for awhile! Below is a picture of the casts that were done this week to have them made.
Love you lil' man
Mom
Tuesday, December 6, 2011
Silent Stalker
I had the opportunity today to watch you interact at the pool with a little girl. She was probably about three years younger then you but this did not bother you at all. I really noticed how aware you are at your inability to communicate verbally with her. You silent "stalked" her from behind, following her around the pool, instigating her to play cat and mouse, and always staying close enough that you could just reach out and touch her if you wanted to. You never did touch her though, never showed aggression or frustration, and relied upon your nonverbal communication to communicate with her. The two of you played for about 45 minutes never needing to say a word and having this wonderful sense of acceptance where some of the walls could come down. From this, we were even invited to have play dates with her family - you made a friend today and all you had to do was be yourself. I was impressed, confused, intrigued, and most of all proud of the man you are becoming.
Angry for you, Not at you
I have to take a deep breath and continue to remind myself that you have grown and developed so much in the last year and half. That your emotional state and physical state are light years beyond where they were in May of 2010 when you arrived home. I have to remind myself of this because it angers me that the public school system never made more progress with you academically.
Maybe I never left you in one environment long enough. We went through a private special needs pre-school, a typical preschool with a shadow, general education kindergarten, home school, and then back to the public kindergarten with strong special education support in a year and half and with all of this, the public school system continued to undo everything we had done. They seemed to pull every ounce of knowledge out of, they were able to make you regress emotionally, academically, and physically. They took away all the work on potty training, they created a completely prompt dependent child, and most of all they made you lose faith and hope in yourself.
More then anything you need people who trust you and have determination that you will succeed. Individuals, teachers, assistants, and specialists have to believe in your passion and determination in order for you to have enough confidence in them to succeed. This is difficult to understand and trust me I go in circles trying to grasp it myself.
I have to step back everyday and decide what will be my battle. What will be my hope and what will be the strings that I hold onto to move you through the next day. What will I let go of and have you experience on your own, what will I push you towards as your new challenge, and what will I hold your hand for to experience and grow in. These are not easy decisions and everyday after you fall asleep at night I stand in your room watching you, wondering if I have made the right decisions.
For now, I have faith in this school being the right school for you. I have to trust that I have made these life changing decisions (moving to Ohio, changing your friends, pushing you to new level) for the right reasons and that you will thrive in this environment. I have to have the determination to see this through for the long haul as you have had so many changes and such a horrible experience with school up until this point that I know it will take time to let you guard down.
Most importantly I have to have the passion and love for you and the acceptance for the little boy you are becoming. Nothing will ever change this love.
So for now, I take a deep breath, I learn to relax, and I marvel in who you are and the confidence you carry in yourself.
I love you
Mom
Maybe I never left you in one environment long enough. We went through a private special needs pre-school, a typical preschool with a shadow, general education kindergarten, home school, and then back to the public kindergarten with strong special education support in a year and half and with all of this, the public school system continued to undo everything we had done. They seemed to pull every ounce of knowledge out of, they were able to make you regress emotionally, academically, and physically. They took away all the work on potty training, they created a completely prompt dependent child, and most of all they made you lose faith and hope in yourself.
More then anything you need people who trust you and have determination that you will succeed. Individuals, teachers, assistants, and specialists have to believe in your passion and determination in order for you to have enough confidence in them to succeed. This is difficult to understand and trust me I go in circles trying to grasp it myself.
I have to step back everyday and decide what will be my battle. What will be my hope and what will be the strings that I hold onto to move you through the next day. What will I let go of and have you experience on your own, what will I push you towards as your new challenge, and what will I hold your hand for to experience and grow in. These are not easy decisions and everyday after you fall asleep at night I stand in your room watching you, wondering if I have made the right decisions.
For now, I have faith in this school being the right school for you. I have to trust that I have made these life changing decisions (moving to Ohio, changing your friends, pushing you to new level) for the right reasons and that you will thrive in this environment. I have to have the determination to see this through for the long haul as you have had so many changes and such a horrible experience with school up until this point that I know it will take time to let you guard down.
Most importantly I have to have the passion and love for you and the acceptance for the little boy you are becoming. Nothing will ever change this love.
So for now, I take a deep breath, I learn to relax, and I marvel in who you are and the confidence you carry in yourself.
I love you
Mom
Sunday, December 4, 2011
Hands On Kinda Day
As we continue to discover and explore Ohio I am always looking for entertainment for us on the weekends to pass the time. We have become much more comfortable spending a day relaxing around in our pajama's which is what Saturday consisted of but today we went and picked up Shelby and headed to Cosi. I had heard wonderful things about Cosi as it is a hands on science museum where you can engage with all of the exhibits. In addition, for the next month they have a Dora the Explorer area for you to play.
Well, I think the pictures say it all:
You and Diego, my favorite!
One kick ass water table - I would love one of these in our own back yard in the future
Flying the space shuttle with Shelby
Discovering the animals that were hiding in the rainforest
I cannot wait for our next adventure and all that will discover
Keep on Truckin Baby
Mom
Well, I think the pictures say it all:
You and Diego, my favorite!
One kick ass water table - I would love one of these in our own back yard in the future
Flying the space shuttle with Shelby
Discovering the animals that were hiding in the rainforest
I cannot wait for our next adventure and all that will discover
Keep on Truckin Baby
Mom
Santa
Last year at Christmas I didn't know what to except, let alone what to really get you! I had a few ideas and knew you would love anything that had to do with cars but I also knew that even with how far we had come we still had so much room for growth. I do not mean developmental growth but I just mean within our relationship. I knew I still didn't get it and I know for a fact you were still as confused as ever and just living each day, let alone trying to predict what may happen next. With all that though, Christmas last year went off without any problems, you loved unwrapping your gifts and then promptly fell back asleep. I started some of our family traditions such as the "elf" and cinnamon rolls made on Christmas Eve but it really didn't click last year. We even went and had your picture taken with Santa and you did smile and comply but the concept of Santa was far and gone.
Well, this year is a little different. You are so excited when we talk about Santa and what he will be brining you for Christmas. We went and had your picture taken with him and he had a little heart to heart with you on if you had been a good boy this year - to this your simply reply was "candy!" Santa did not quite understand the obsession with "candy" but hey, at least you responded verbally with something! I am sure it also had to do with the basket of candy canes sitting directly next to you.
Overall I am very excited for Christmas this year and continuing with our family traditions. We will be in Virginia for half of the holiday and we will continue to the "elf" tradition while we are there. I have most of your shopping done and cannot wait to see you open the gifts. I know this will be a holiday to remember and love to continue to grow with you.
Love you baby
Mom
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