A few months ago, an
article was published in the New York Times about a father whose career path in neuroscience was led in a different direction after the birth of his daughter with Down syndrome. This article also has information in regards to cognitive findings for individuals with down syndrome and the possibility of future drug interactions.
Since then, people have been asking me my opinion on this. It has taken some time for me to respond. I have found myself typing this post again and again. I am solid in my beliefs yet worried how they may be conveyed and interpreted.
I will say, thank you for your messages and emails, I love reading all of them. In an effort to address this, I'm just going to post my response. I am honored that you find my opinion worthy. I hope you all will accept this mass response; if not, I can email you each with a link...to this post. Just sayin'.
Now ...down to the nitty gritty.
When Eslea was born I did the same as most parents in this situation, I began researching. I wanted all the information available to me that was current on Down syndrome. Most likely the difference from other parents is that I already had a very vast resource on hand in regards to that topic.
Lucky for me, I also have resources and knowledge of other aspects of human nature...such as ADHD, Alzheimer’s, and OCD...to name a few. Before becoming a school counselor, I worked in the mental health system for years as a therapist. Although it is not necessary in my current position, I still maintain my license as a professional counselor; to do so I attend workshops and conferences yearly to become familiar with updated findings and information.
I say this because through my experiences I have become familiar with the pros and cons of utilizing medications in treatment and prevention. I do not feel that medication is always the answer. I truly believe that there are steps that all individuals can take to improve their own behaviors, cognitions and/or emotions.
BUT for many people even after taking those steps, they still need pharmaceutical interventions. I will always be in favor of taking any steps that will assist a person in achieving a "level playing field" in development or some other aspects of life.
If someone is diagnosed with diabetes, of course they should be allowed to have their insulin. That is a medical issue. Yet too often we forget that other areas are also "medical" issues.
A child with ADHD...yes he can learn behavioral strategies to control his thoughts and thus his impulses. Yet the movement from thoughts to reactions happens so quickly that it makes impulses difficult to control. The ability for these kids to utilize fine motor skills is a struggle which can often be seen in their writing. These "symptoms" are a result of neurological issues. Frankly, that is nothing to be ashamed of. That child deserves a chance to learn and grow as any other child. If he requires medications to help him do so, so be it.
When there is a medical issue stunting growth and development and life functions, YES, I believe that medications may be necessary. Yes...I also believe that a person should still try to find the source of any issues and work to develop their own coping strategies that do not include medications...yet...medications may still be needed to fill the gap that is left. The gap that separates that person from, well… their full potential in life.
The day Eslea was born, I began to research Down syndrome. I began to study behaviors, cognitive developmental milestones, social interactions, etc that are specifically related to children with Down syndrome. I was not looking for just the most common treatments and therapies. No, as a trained clinical counselor, I was looking for patterns. This is exactly what I found. I noticed early on that many behaviors and learning patterns of kids with DS resembled those of children with ADHD. I also noticed similar (and fewer) characteristics to those of OCD (obsessive compulsive disorder) and Alzheimer’s.
So, early on I started working with Eslea as if she was a child with ADHD. Short steps, repetitive learning, focused learning, adapting to new behaviors, all of this over and over again. I focused mainly on cognitive and social development with Eslea while also working to help practice at home the skills she was learning through her SLP, OT and PT. Doing all of this has made such a difference in her development. She is just shy of hitting the developmental milestones of her peers at the same time as they. If it wasn't for her short chubby little arms/legs in addition to the months she had to go without tummy time as we awaited her heart surgery, she would be so much further ahead.
Yet as a parent I am frustrated because I have always known somewhere deep in my heart that she has a glitch in her processing of information. Something that her ADHD type traits are assisting in to set up blocks for her. Eslea is attentive and you can tell she likes to problem solve. Yet she gets very frustrated and is obviously overcome with stimuli at times.
Now...why am I writing about this now? Why have I finally decided to give my thoughts on the article that was published nearly two months ago?
Because it looks like very soon there will be pharmaceutical interventions available for the Down syndrome community. One organization that I receive emails from is the
Down Syndrome Research and Treatment Foundation. Their mission is to promote biomedical research to one day find treatments to not cure Down syndrome ,but instead to help improve memory, speech, learning and the overall quality of life. After years of research, it finally seems as if the pharmaceutical companies will soon provide a possible treatment. You can view the press release
HERE. Unfortunately Eslea is not old enough to participate in the clinical trials, but maybe you know someone that may be eligible.
For those who want to know, YES, when it becomes available I will allow Eslea to take medications.
I love Eslea. She is perfect. She is funny, unique, and beautiful. Down syndrome is not something that needs to be cured. It is not something that needs to be eliminated. But, as with any other medical condition, I do believe that those with DS deserve the same chance to learn, grow and function as any other human being. Just as with ADHD and diabetes, she may only need an outside agent to help her be the best kid she can be.
It will not change the person that is Eslea.
She will still sport that extra 21st chromosome. She will still have stubby little arms and short legs. She will still have almond eyes and a flat nose. She will still be Eslea. Designer genes and all.
I would love to know your opinions and read your comments on this topic. Feel free to post below or send me an email:
eleak16@yahoo.com or
info@crazybeautifullove.com
-
erin
