Please visit my new blog for the latest in my amazing journey! :) You won't believe all the incredible things I am doing these days...I'm definitely living up to my name "Mighty Max."
I'm still struggling with some health issues, but I am determined to not let them stop me from enjoying life and reaching my goals. So many fun things to do!
My mommy temporarily had our new site private, but she is so proud of me (that's putting it lightly...she absolutely adores me and thinks I practically walk on water!!!) and wants to share my wonderful spirit and energy with the world.
Hope you enjoy reading about my journey! :)
Saturday, March 03, 2007
Sunday, January 28, 2007
Insightful Article about CHARGE
A mother (of an adorable daughter with CHARGE) wrote the following article for a Deaf-Blind Awareness week publication in IL. I think it is a wonderful description of the overwhelming sensory issues impacting our special children.
CHARGE syndrome is becoming one of the leading causes of congenital deaf-blindness. Consider this. At its worst, CHARGE strips a child of all senses. Vision, hearing, and balance can be absent due to malformations of the eye and any or all parts of the inner and middle ear. Taste can be eliminated due to prohibition of oral feeding caused by swallowing problems, severe gastro-esophageal reflux, and aspiration pneumonias. Smell can be absent due to problems with the olfactory nerve. Touch can be reduced due to severe sensory defensiveness and integration issues.
Obviously, a child with such severe sensory limitations will be a challenge in the classroom. How do you tap into a child's intellect when all of the sensory pathways are impeded? The question boggles my mind. I'm speechless at the thought of it. (Those who know me understand that I am not often speechless!)
David Brown, a California Deaf-Blind Educator and CHARGE Specialist put it this way: CHARGE is "medically and developmentally, one of the most complex conditions that we know. Children with CHARGE are also likely to be amongst the most truly 'multi sensory impaired' people you will ever meet, having difficulties not just with vision and hearing but also with the senses that perceive balance, touch, temperature, pain, pressure, and smell. The many different anomalies associated with CHARGE will each impose different, varying, and often, conflicting demands upon the child."
With the worst-case scenario in mind, my daughter is doing incredibly well. She can see out of one eye. She can hear with one ear. After using a feeding tube in infancy, she can now eat virtually anything. After years of sensory issues, she is gaining more and more control over her own sensory state. Her balance is a bit shaky - but it's there.
To the outsider, to the untrained eye, she functions well. She seems to see"okay". She seems to hear "just fine". She gets around "okay". Everything looks different - but "okay". What is unseen is the invisible effort it takes for her to appear to function so well. It's hard to imagine the effort it takes to keep her body straight in the chair, to keep her visualand auditory attention focused on the task at hand, to keep her pencil steady in her unusually limber and uncoordinated little hand. She is getting sensory input from all 5 senses - but all of the information isslightly skewed or incomplete. Somehow, she manages to create a fairly decent, but unique, view of her world from all of that incomplete and slightly inaccurate input.
How do we ensure that the view she is creating and the concepts she is developing are correct? How do we ensure that she gets as accurate and complete information as possible? How do we adjust her day for the fatigue that comes from all the effort it takes to simply "be"? How do we fit all of the necessary therapies (OT, PT, speech, O&M, and more) into her schoolday without losing time for academics? How do we support her social development when her experience of the world is so vastly different from her age-mates?
I can assure you that a typical classroom teacher in a typical school district with typically available special education supports cannot answer the above questions. Specialists in deaf-blindness with experience and understanding of the complexities of the multiple impairments of CHARGE are absolutely necessary for the success of my daughter and other children like her. Specialized supports must be available around the country in order for children with multiple and complex impairments, including deaf-blindness, to be understood and to be supported to succeed.
CHARGE syndrome is becoming one of the leading causes of congenital deaf-blindness. Consider this. At its worst, CHARGE strips a child of all senses. Vision, hearing, and balance can be absent due to malformations of the eye and any or all parts of the inner and middle ear. Taste can be eliminated due to prohibition of oral feeding caused by swallowing problems, severe gastro-esophageal reflux, and aspiration pneumonias. Smell can be absent due to problems with the olfactory nerve. Touch can be reduced due to severe sensory defensiveness and integration issues.
Obviously, a child with such severe sensory limitations will be a challenge in the classroom. How do you tap into a child's intellect when all of the sensory pathways are impeded? The question boggles my mind. I'm speechless at the thought of it. (Those who know me understand that I am not often speechless!)
David Brown, a California Deaf-Blind Educator and CHARGE Specialist put it this way: CHARGE is "medically and developmentally, one of the most complex conditions that we know. Children with CHARGE are also likely to be amongst the most truly 'multi sensory impaired' people you will ever meet, having difficulties not just with vision and hearing but also with the senses that perceive balance, touch, temperature, pain, pressure, and smell. The many different anomalies associated with CHARGE will each impose different, varying, and often, conflicting demands upon the child."
With the worst-case scenario in mind, my daughter is doing incredibly well. She can see out of one eye. She can hear with one ear. After using a feeding tube in infancy, she can now eat virtually anything. After years of sensory issues, she is gaining more and more control over her own sensory state. Her balance is a bit shaky - but it's there.
To the outsider, to the untrained eye, she functions well. She seems to see"okay". She seems to hear "just fine". She gets around "okay". Everything looks different - but "okay". What is unseen is the invisible effort it takes for her to appear to function so well. It's hard to imagine the effort it takes to keep her body straight in the chair, to keep her visualand auditory attention focused on the task at hand, to keep her pencil steady in her unusually limber and uncoordinated little hand. She is getting sensory input from all 5 senses - but all of the information isslightly skewed or incomplete. Somehow, she manages to create a fairly decent, but unique, view of her world from all of that incomplete and slightly inaccurate input.
How do we ensure that the view she is creating and the concepts she is developing are correct? How do we ensure that she gets as accurate and complete information as possible? How do we adjust her day for the fatigue that comes from all the effort it takes to simply "be"? How do we fit all of the necessary therapies (OT, PT, speech, O&M, and more) into her schoolday without losing time for academics? How do we support her social development when her experience of the world is so vastly different from her age-mates?
I can assure you that a typical classroom teacher in a typical school district with typically available special education supports cannot answer the above questions. Specialists in deaf-blindness with experience and understanding of the complexities of the multiple impairments of CHARGE are absolutely necessary for the success of my daughter and other children like her. Specialized supports must be available around the country in order for children with multiple and complex impairments, including deaf-blindness, to be understood and to be supported to succeed.
Tuesday, January 16, 2007
SAVE THE DATE
The 20 Hour Crop for the Mighty Maxwell Guild is scheduled for Friday, April 20th and Saturday, April 21st. Details will be coming out in the next month, but for now...please mark it on your calendar. Last year we raised nearly $15,000 and we would love to match that again this time!
The money raised through the Mighty Maxwell Guild supports the Uncompensated Care Fund at Children's Hospital in Seattle. This fund ensures that every child, regardless of insurance or financial means, receives quality medical care.
Thank you to everyone for your support of this very worthy cause! :)
The money raised through the Mighty Maxwell Guild supports the Uncompensated Care Fund at Children's Hospital in Seattle. This fund ensures that every child, regardless of insurance or financial means, receives quality medical care.
Thank you to everyone for your support of this very worthy cause! :)
Tuesday, January 02, 2007
QUICK UPDATE & SITE INFO
If you have requested but not received your "invite," please check your spam mail. Several people have found the emails going directly to there because of the address used from google.
Meanwhile, until you gain access...
Max is doing pretty well! :) We have all taken turns getting the stomach bug (again) and Max is even kind enough to share it with his nurses. I was pretty worried a few days ago about him but he has finally bounced back to somewhat his normal self.
I am quickly learning that isolation is very important for Maxwell. His immune system is truly compromised. It's amazing how quickly he can catch the latest bug and how much longer it takes him to recover.
Despite the bugs, he has reached some new milestones, which is VERY exciting, and is sporting a cool new short haircut. Incredibly handsome as always. :)
On a personal note, thanks for all the concerned emails about my health...greatly appreciated! The series of heart and lung tests all came back relatively normal. Yay! Well, ok they did diagnose me with "asthma" after a very lengthy test last week, but most likely it is stress induced...and fortunately it isn't anything serious. But my doctor highly recommended I find a way to eliminate at least some of the stress...hmm, perhaps resolving the divorce (separate post on that) will help.
This afternoon Max has OT at the hospital and then massage therapy at our house. The massages are supposed to help with his muscle tone and getting him familiar with his body. This is our third session.
This week we have our annual Birth to Three evaluation of Maxwell. We will review the goals we set in January 2006 and establish new ones for 2007! I am so excited to report everything he has accomplished! :)
Meanwhile, until you gain access...
Max is doing pretty well! :) We have all taken turns getting the stomach bug (again) and Max is even kind enough to share it with his nurses. I was pretty worried a few days ago about him but he has finally bounced back to somewhat his normal self.
I am quickly learning that isolation is very important for Maxwell. His immune system is truly compromised. It's amazing how quickly he can catch the latest bug and how much longer it takes him to recover.
Despite the bugs, he has reached some new milestones, which is VERY exciting, and is sporting a cool new short haircut. Incredibly handsome as always. :)
On a personal note, thanks for all the concerned emails about my health...greatly appreciated! The series of heart and lung tests all came back relatively normal. Yay! Well, ok they did diagnose me with "asthma" after a very lengthy test last week, but most likely it is stress induced...and fortunately it isn't anything serious. But my doctor highly recommended I find a way to eliminate at least some of the stress...hmm, perhaps resolving the divorce (separate post on that) will help.
This afternoon Max has OT at the hospital and then massage therapy at our house. The massages are supposed to help with his muscle tone and getting him familiar with his body. This is our third session.
This week we have our annual Birth to Three evaluation of Maxwell. We will review the goals we set in January 2006 and establish new ones for 2007! I am so excited to report everything he has accomplished! :)
