There is pride, accomplishment, satisfaction, in knowing that you put in the work and the outcome will be a positive result.
Image you have been given a homework assignment. You have spent a few weeks researching the topic, digging through information, coming up with a completed assignment that you feel is thorough, representative of you, and you are gong to be rewarded with a good grade.
You happily turn your assignment into the professor. The class reconvenes in two weeks, and you are handed back your assignment. You look down, and it surly isn’t the result you expected. You find yourself staring at the letter grade “F”. You failed!
On the assignment, you find the following note ….
” You are an intelligent person and a good researcher…but I have to tell you that if you follow this treatment plan, your child will not thrive .”
SO let ‘s step back and examine assignment number four!
The goal of the assignment was to come up with a care plan for my 3 week old fictitious son diagnosed with Down syndrome.
I was given restricted guidelines, asked to review suggested websites, and was told I would have access to the books in my local public library.
I was given a list of symptoms to be addressed, and asked to come up with a care plan.
I took this assignment extremely seriously. I made my way to the local library and enlisted the help of the local librarian. We pulled books that I felt were critical to the completion of my care plan.
I combed through the provided internet references. I became a detective. I would not call myself Sherlock Holmes, but I was determined to nail down this care plan.
The care plan ended up being 6 pages long. I addressed the following aspects …
- Where to start
- Finding a case manager
- Understanding each symptoms and asking pertinent questions to address the symptoms
- How will I organize appointments
- Learn more about region centers
- Understanding what defines “normal” clild development”
- Daily schedule
- What is the latest suggested health schedule for a toddler with DS
- Outside support
- Enlisting help
I felt the care plan covered a wide spectrum and would give my son the best opportunity to embrace a rich quality of life.
What is compelling about this assignment was that I initially felt upset that I HAD FAILED. Imagine this was a real world scenario, and I am the mother of a son with Down syndrome?
It’s not that I failed personally, it’s that I COULD HAVE FAILED MY SON.
I had time to myself daily for the 3 weeks to prepare my care plan. I wasn’t burdened by my grief, exhaustion, worry, unsupportive husband, unsupportive family, insecurity ….
I wasn’t burdened by those things. Time was available to clearly think and devise a plan, and I still managed to fail!
Amniocentesis, genetic testing, accompanied by opinions of medical specialist make it clear that the journey is too difficult, too much of a burden on the family, and they will openly suggest termination of pregnancy.
What are we saying to the mothers that are bravely accepting the challenge to have a child with Down syndrome, and then not giving them the proper guidance, care, and direction to allow them to make the best decisions toward their child ‘s quality of life.
Imagine what is running through the subconsciousness of a mother ‘s mind!
Is this the best plan of attack? Will my son be able to progress in this world?
In the back of their mind lies nagging questions, because there are no guidelines, no one perfect solution.
A particular group or subset of people may feel they have the ideal solutions, but if you head down that suggested path, and another group is telling you,” that’s not the best way to care for your child, head down this path” imagine the confusion and heartache. I can see how some families would freeze up and not follow any suggested care plans.
I can’t help but think of the families that don’t have access to quality healthcare. Families that don’t have the financial means to advocate for their children.
What about the parents that have not prepared? Parents that have no previous knowledge that their child would be born with Down syndrome!
Andi made it abundantly clear that there are biomedical interventions that families are providing their children to help their children with DS develop closer to the typical child.
Nowhere in my care plan research did this information present itself!
I want to acknowledge the families that have been open to sharing what works and has not worked for their families via the internet. Families that are blazing a trail and pushing to make sure information is available to everyone.
Some members of the medical community have made alternative treatments taboo. The use of a particular protocol or suggestion that is not scientifically researched is considered quackery .
Should a mother raising a toddler with Down syndrome hold off on using biomedical interventions because the scientific community has not come together with funding to push for research on biomedical interventions?
Or should first time parents listen to the families that have lived and gone through having a child with Down syndrome and have seen improvement in their children’s lives using biomedical interventions?
I don’t have the answers, but I’m hoping that EVERY FAMILY HAS ACCESS to ALL of the information available to them.