"As a parent of a child with special needs we need to enjoy our kids for who they are not for who they could have been"
December 31, 2011
Reflections
2011 brought another great year for this amazing little boy. After much hard work and repeated tries, he finally received his very own hart walker. Something that I had learned about from his fabulous OT a few years ago which additionally brought Jace into the intensive therapy program. His amazing feeding team helped pave the path to help Jace qualify for his own Ipad which is leading to more therapy opportunities as we will start 2012 by adding private speech and additional OT into his schedule. I am ecstatic for this amazing child to finally have an opportunity to communicate! A blended diet is still in the works but knowing that this just is not an overnight transition and will take some time to adjust, so for now, it is a plan to look forward to in the coming year. One of the greatest transitions was watching Jace enter Kindergarten, he has an awesome new team and the most incredible teacher. Every school day, he is excited, even on the days he is tired, as soon as he knows he is going to school, the most incredible smile spreads on his face. He is surrounded in an environment that seems to have been made especially for him, it is perfect. We have started the work towards getting Jace a new wheel chair, and are working towards his first tricycle. As Jace has taught me right from the start, impossible really means "I am possible"...and so when I reflect on the things I never imagined him doing so many years ago, I now know that he will have the same opportunities with the right equipment. We will be ringing in the new year together this year and maybe he will even do a little dance in his hart walker...you just never know with this kiddo!
I am the Child
I Am The Child
I am the child who cannot talk. You often pity me; I see it in your eyes. You wonder how much I am aware of — I see that as well. I am aware — whether you are happy or sad or fearful, patient or impatient, full of love and desire, or if you are just doing your duty by me. You cannot conceive my isolation, so complete it is at times. I do not gift you with clever conversation, cute remarks to be laughed over and repeated. I give you instead opportunities to discover the depth of your character, the depth of your love, your commitment, your patience. I am the child who cannot talk.
I am the child who cannot walk. The world seems to pass me by. You see the longing in my eyes to get out of this chair, to run and play like other children. I want the toys on the shelf, I need to go to the bathroom, oh I’ve dropped my fork again. I am dependant on you in these ways. My gift to you is to make you more aware of your great fortune, your healthy back and legs, your ability to do for yourself. Sometimes people appear not to notice me; I always notice them. I give you awareness. I am the child who cannot walk.
I am the child who is mentally impaired. I don’t learn easily, if you judge me by the world’s measuring stick, what I do know is infinite joy in simple things. I am not burdened as you are with the strife’s and conflicts of a more complicated life. My gift to you is to grant you the freedom to enjoy things as a child, to teach you how much your arms around me mean, to give you love. I give you the gift of simplicity. I am the child who is mentally impaired.
I am the disabled child. I am your teacher. If you allow me, I will teach you what is really important in life. I will give you and teach you unconditional love. I gift you with my innocent trust, my dependency upon you. I teach you about how precious this life is and about not taking things for granted. I teach you about forgetting your own needs and desires and dreams. I teach you giving. Most of all I teach you hope and faith. I am the disabled child.
December 26, 2011
October 4, 2011
Catching up in Twenty Eleven
Wow...how did August sneak up so soon?
Jace has had two successful intensive sessions already this year. Finally, after a two year struggle with insurance approval from Washington State, we finally got the approval we needed to order Jace's Hart Walker. It was not enough that he was able to walk outside...he had to prove his skills by submitting a video at home, showing clearly he could walk indoors. Turns out he is the typical 5 year old who does what you are asking when you are not looking...good thing I left that camcorder filming while I disappeared into the kitchen, hoping he would take the necessary steps. I wonder what else he does while I am not looking.
Other news: Jace is eating much better and no longer aspirates when he swallows food. This will allow the school to work with him on his feeding skills...yippee!
Changes: This was the end of our preschool adventures and I was very lucky to not only have a team who went beyond and above for Jace, they thought outside the box so to speak. His amazing teacher would not take no for an answer when seeking out to try the Ipad for communication skills...and so she obtained private funding to get him one...hopefully, we can get him one for home as he was very successful with it and his future teacher is already looking into it for part of his classroom needs. The best part of the preschool team was their fight to wait for finalizing his IEP so that his future team could meet with the current team and talk goals and get to know Jace.
Since we received the fantastic news about Jace's hart walker at the beginning of his most recent intensive session, we were able to focus on other skills...like crawling. Two years ago, he would cry and fuss at being on his tummy, and now he is determined to go somewhere. Intensive is by far the best thing I have done for him...its helped him become more tolerant of his surroundings, its decreased his sensitivity to certain sounds like ripping velcro (used to make him come unglued)! Always a happy little boy, he is even more so today than a few years ago.
Often people ask me where I see him ending up...I think its up to him, he's determined, he understands what he is told...example, we often have to ask him to calm his body down...he stops and becomes still, a difficult feat for him but he can slow down and focus. Never say never...no one knows what the future holds.
For over two years, I have had him off any medications for reflux as he's had two surgeries that were supposed to prevent him being able to
Jace has had two successful intensive sessions already this year. Finally, after a two year struggle with insurance approval from Washington State, we finally got the approval we needed to order Jace's Hart Walker. It was not enough that he was able to walk outside...he had to prove his skills by submitting a video at home, showing clearly he could walk indoors. Turns out he is the typical 5 year old who does what you are asking when you are not looking...good thing I left that camcorder filming while I disappeared into the kitchen, hoping he would take the necessary steps. I wonder what else he does while I am not looking.
Other news: Jace is eating much better and no longer aspirates when he swallows food. This will allow the school to work with him on his feeding skills...yippee!
Changes: This was the end of our preschool adventures and I was very lucky to not only have a team who went beyond and above for Jace, they thought outside the box so to speak. His amazing teacher would not take no for an answer when seeking out to try the Ipad for communication skills...and so she obtained private funding to get him one...hopefully, we can get him one for home as he was very successful with it and his future teacher is already looking into it for part of his classroom needs. The best part of the preschool team was their fight to wait for finalizing his IEP so that his future team could meet with the current team and talk goals and get to know Jace.
Since we received the fantastic news about Jace's hart walker at the beginning of his most recent intensive session, we were able to focus on other skills...like crawling. Two years ago, he would cry and fuss at being on his tummy, and now he is determined to go somewhere. Intensive is by far the best thing I have done for him...its helped him become more tolerant of his surroundings, its decreased his sensitivity to certain sounds like ripping velcro (used to make him come unglued)! Always a happy little boy, he is even more so today than a few years ago.
Often people ask me where I see him ending up...I think its up to him, he's determined, he understands what he is told...example, we often have to ask him to calm his body down...he stops and becomes still, a difficult feat for him but he can slow down and focus. Never say never...no one knows what the future holds.
For over two years, I have had him off any medications for reflux as he's had two surgeries that were supposed to prevent him being able to
October 3, 2011
Early Halloween Fun!
So many times I think we get wrapped up in milestones, doctor and therapy appointments and forget that this is a child who needs to experience what childhood should be. Just like scrapbooking, these memories need to be cherished and treasured...
Jace's older sister happened to come home from college this past weekend, along with a cousin who came into town at the same time. Since it was the first of October, I thought why not experience a hayride and pumpkin picking early in the season. So we visited BiZi farms, and Jace fed goats, talked to a donkey, giggled at pigs and loved the hayride. It was great to see him have so much fun outside with the bonus of cooperative weather. It was a great day to have all of the kids together...
September 22, 2011
Assistive Technology...
What a great day Jace has had...at school this week, he identified with 100 percent accuracy patterns of apples and leafs. He is impressing his teachers! Proud mom!
He has continued to gain weight and finally have satisfied and come to agreement that despite where he falls on the charts, I am no longer under pressure to push weight gain. He has some chunk...but realistically, he is never going to be in the 50 percentile for weight...feeling like the pressure is finally off and we can start learning how to properly introduce some blended foods into his diet.
Great and exciting news! We received a referral for assistive technology and based on the outcome will probably be able to get Jace either an ipad or some switches at home depending on what is recommended. Yay!
Possibly promising news, is we are going to attend a positioning clinic and hope to find a way to get Jace into a better wheelchair...the bad news is we might be stuck due to insurance and the recentness of the chair that insurance paid for...donations and creativity are always possibilities so we continue to have hope...as always...
He has continued to gain weight and finally have satisfied and come to agreement that despite where he falls on the charts, I am no longer under pressure to push weight gain. He has some chunk...but realistically, he is never going to be in the 50 percentile for weight...feeling like the pressure is finally off and we can start learning how to properly introduce some blended foods into his diet.
Great and exciting news! We received a referral for assistive technology and based on the outcome will probably be able to get Jace either an ipad or some switches at home depending on what is recommended. Yay!
Possibly promising news, is we are going to attend a positioning clinic and hope to find a way to get Jace into a better wheelchair...the bad news is we might be stuck due to insurance and the recentness of the chair that insurance paid for...donations and creativity are always possibilities so we continue to have hope...as always...
"Perseverance is not a long race. It is many short races one after another."
September 21, 2011
Catching up!
It's been a while since our last blog...so much news to report!
Jace finally obtained his own hart walker...turns out if I leave the room with the camcorder capturing the moments, he will take the necessary steps that insurance wanted to see...he is now practically running his first few steps in it...spending nearly an hour a day in it at school.
More great news: he has improved so much with his swallowing abilities that he no longer is at risk for silent aspiration and is being fed daily at school, this is a huge improvement! We are very thankful to our OT who weekly came to my home and worked the skills with me. Thanks WJ!The biggest news and change for Jace is that he started Kindergarten this fall and loves it so much, he almost gives me a dirty look when I show up to take him home. He is continuing to impress all teachers, therapists and staff.
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