This is Feeding Tube Awareness Week. This time last year, I would have never guessed that I would be spreading awareness about feeding tubes. In fact, this time last year we were in the middle of our six week Day Feeding Program at Mt. Washington Pediatric Hospital. Autumn went to the program everyday for six weeks, having 3 meals a day there. We entered the feeding clinic after doing 2 years of feeding therapies with a speech therapist and an occupational therapist.
Autumn was a tough case. Like everything else in her life, she was inconsistent. There was no real progress. Autumn wasn't not eating for behavior reasons( although she is very selective)she just often didn't feel well enough to eat. Because of her mitochondrial dysfunction, fasting is a problem. Even going for the typical eight hours of sleep without food caused increased problems.
In May, after being discharged from the feeding clinic for 6 weeks, Autumn had lost more weight. Her GI doctor decided it was time to place a g-tube for failure to thrive. I was crushed. As soon as I got into the car, the tears started falling. I felt like a parental failure. How could I not get my child to eat enough to the point of needing a feeding tube? The six weeks of scheduling and sacrificing activities to complete the Feeding Day Program felt like a waste. Everything seemed to be happening so quickly.
Fast forward 9 months, and we are so happy to have the feeding tube. We no longer have to stress about Autumn not feeling well enough to eat. We are able to keep her hydrated. At night she gets a continuous feed as she sleeps. We no longer gave to find creative ways to get her to eat uncooked corn starch before bed(corn starch is a complex carbohydrate that gives the body something to break down during the nighttime fast). Her medications that taste terrible can be placed directly into the tube. No more wondering how much of her seizure meds ended up spit out instead of in.
Ironically, she eats more by mouth now than she ever has. We think the continuous feeds allow her to wake up feeling good enough to be ready to eat by mouth.
People often ask how long she will need the feeding tube. We really don't know for sure, but I am guessing it will be her friend for life. Mitochondrial dysfunction does not have a cure. I have learned that not everything that seems bleak and drastic is a bad thing. It could be a blessing in disguise.
Friday, February 14, 2014
Thursday, February 6, 2014
3 Big Reasons You Want My Special Needs Child to Receive Accommodations in Your Child's Classroom
Federal regulations make it mandatory for special needs children to receive services and accommodations that can make the classroom a better learning environment for children who learn differently from their peers. Many parents often wonder why. Here a three big reasons I think you should be happy that my child is being accommodated.
#1 By accommodating my child now, there is a better chance that she will be able to contribute later.
We all know the direction that we have been going in. I remember hearing one commentator say,
I want my child to be helping to pull the cart. Just like other parents, I want her to be able to work and contribute. I don't want to resign her at 4 to being in the cart.
We are all aware of the steady increase in disabilities, including the staggering numbers on Autism.
As a society, we can not afford to not make accommodations for children now, that will enable the adults of tomorrow.
#2 My child is already no stranger to hard work.
You might think that accommodations make my child lazy, or she is lucky that she has rest breaks or an adult assistant to help her. The truth is, she is no stranger to hard work. Physical therapy, speech therapy and occupational therapy are no joke. She comes away exhausted. But again, the goal is to bring her within reach of her typically developing peers. She will be a hard, determined worker as an adult. She doesn't know any other way.
#3 My child being accommodated means your child or grandchild will also be accommodated.
It is very easy to be naïve and believe that your child is healthy and will never need anything special to get through. Genetics does not discriminate. I have met parents with children that became ill at 18. We don't know exactly what the future holds.
So the next time we are at Family Story Time, and I have to remove my child because she is laughing inappropriately and uncontrollably because of a seizure, remember this list. Be happy for us that we are pushing to work beside your child instead of being pulled in the cart by your child.
#1 By accommodating my child now, there is a better chance that she will be able to contribute later.
We all know the direction that we have been going in. I remember hearing one commentator say,
There are more people in the cart, than there are pulling the cart.
I want my child to be helping to pull the cart. Just like other parents, I want her to be able to work and contribute. I don't want to resign her at 4 to being in the cart.
We are all aware of the steady increase in disabilities, including the staggering numbers on Autism.
As a society, we can not afford to not make accommodations for children now, that will enable the adults of tomorrow.
#2 My child is already no stranger to hard work.
You might think that accommodations make my child lazy, or she is lucky that she has rest breaks or an adult assistant to help her. The truth is, she is no stranger to hard work. Physical therapy, speech therapy and occupational therapy are no joke. She comes away exhausted. But again, the goal is to bring her within reach of her typically developing peers. She will be a hard, determined worker as an adult. She doesn't know any other way.
#3 My child being accommodated means your child or grandchild will also be accommodated.
It is very easy to be naïve and believe that your child is healthy and will never need anything special to get through. Genetics does not discriminate. I have met parents with children that became ill at 18. We don't know exactly what the future holds.
So the next time we are at Family Story Time, and I have to remove my child because she is laughing inappropriately and uncontrollably because of a seizure, remember this list. Be happy for us that we are pushing to work beside your child instead of being pulled in the cart by your child.
Sunday, January 5, 2014
Yesterday was Great....And I am So Mad
Yesterday was a GREAT day! And I am so mad that I could scream.
Yesterday was the first day in more than a month that I saw my little girl. Sure, Sunshine hasn't been physically gone, but she just hasn't been here.
For more than a month she has not been able to focus, is often confused and has not been able to speak anything meaningful. She has been stimming to try to make herself feel better. Sunshine suffers from a metabolic disorder that causes seizures. And these seizures have been stealing my child.
But yesterday was different. We had a change in medication. The neurologist warned, she may be very sleepy and cranky, as we have tripled her usual dose temporarily to calm her brain. This medication increase is temporary, until the pharmacy can get her new medication. We prepared for Sunshine to sleep away her day.
Instead, Sunshine was the best she has been in I don't know how long. Our little girl played. She played ALL DAY. Usually, she only has the energy to last about 10 minutes before she needs to lay down or take a break. But yesterday, she was so NORMAL. I know you aren't supposed to use that word, but that is what it was! She played, she spoke to us, she interacted with her siblings, she requested what she wanted. She even sought me out to say "what's this?" about a piece of her Red Rocket, a rocket she flew around the house most of the day. If you have a child with a language delay or communication disorder, you get how big this is.
She seemed so at peace with herself. Anyone with a child with a Central Nervous System Disorder, Autism or Sensory Processing Disorder can relate. There days when your child is literally crawling in their own skin. But yesterday was different.
When it was time for bed, Sunshine did not want to go. Instead she said, "I want to play!" She did not want the day to end. Neither did we.
So now I sit at 5am typing my first blog, hoping that I can be just as mad today as I was yesterday!
Yesterday was the first day in more than a month that I saw my little girl. Sure, Sunshine hasn't been physically gone, but she just hasn't been here.
For more than a month she has not been able to focus, is often confused and has not been able to speak anything meaningful. She has been stimming to try to make herself feel better. Sunshine suffers from a metabolic disorder that causes seizures. And these seizures have been stealing my child.
But yesterday was different. We had a change in medication. The neurologist warned, she may be very sleepy and cranky, as we have tripled her usual dose temporarily to calm her brain. This medication increase is temporary, until the pharmacy can get her new medication. We prepared for Sunshine to sleep away her day.
Instead, Sunshine was the best she has been in I don't know how long. Our little girl played. She played ALL DAY. Usually, she only has the energy to last about 10 minutes before she needs to lay down or take a break. But yesterday, she was so NORMAL. I know you aren't supposed to use that word, but that is what it was! She played, she spoke to us, she interacted with her siblings, she requested what she wanted. She even sought me out to say "what's this?" about a piece of her Red Rocket, a rocket she flew around the house most of the day. If you have a child with a language delay or communication disorder, you get how big this is.
She seemed so at peace with herself. Anyone with a child with a Central Nervous System Disorder, Autism or Sensory Processing Disorder can relate. There days when your child is literally crawling in their own skin. But yesterday was different.
When it was time for bed, Sunshine did not want to go. Instead she said, "I want to play!" She did not want the day to end. Neither did we.
So now I sit at 5am typing my first blog, hoping that I can be just as mad today as I was yesterday!
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