The Lesson: Options

October and November have merged leading to a singular, yet powerful lesson. Andi Durkin, mother raising a toddler with Down syndrome was not comfortable with a dominant perspective on how to raise her son.

She opened herself up to different suggestions and approaches and is sharing what is working for her son on her blog: Down Syndrome: A day to day guide.

During the interview Andi stressed the importance of getting your doctors opinion, however, she also reminded us…

“Explore all your options.”

It is a powerful lesson that often get’s overlooked. There is NOTHING WRONG with seeking additional opinions. One man or one woman, regardless of certification, does not have all of the answers.


Much love,

Podcast 12-12-12 With Project Member Andi Durkin-Down syndrome


Andi speaks openly about her journey mothering a toddler with Down syndrome. INTERESTING information for older mother’s interested in getting pregnant. We talk diet, nutrition, biomedicals, and more!

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References Mentioned:

Down syndrome: A day to day guide 

You: Having A Baby 

Older mom’s interested in getting pregnant 

Biomedical Basics

Much love,

PS: Transcript coming soon!

PSS: See disclaimer

I Failed My Assignment, and More!

Rubber Stamp With Failed Word



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
  • Immunizations
  • Understanding what defines “normal” clild development”
  • Insurance
  • Daily schedule
  • What is the latest suggested health schedule for a toddler with DS
  • Expectations
  • Allergies
  • Assessments
  • Outside support
  • Enlisting help
  • Communication
  • Love

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.

Much love,

Extension Leads To Special Needs Care Plan

An extension was in order for October’s 12-12-12 project focus on Down syndrome. There was too much important ground to cover in one month.

Andi, mother of a toddler with Down syndrome, asked me to complete individual assignments leading me to a greater understanding of mothering a child with Down syndrome.

In case you have not checked out the previous assignments, here you are…

Before I forget, check out my AWESOME Down syndrome awareness bracelet

Down syndrome awareness bracelet

Assignment #1

 Assignment #2

Assignment #3

The last two weeks I have been working on Assignment #4…

Congratulations, Marissa! You have a baby boy! You need to come up with a plan as how to support his health and development.

Andi provided me photos of my newborn, asked me to name my son, and shared a list of symptoms he is experiencing. She asked me to pull from pre-determined resources and develop a care plan.

My response to the assignment….

WOW! The first thing that came into my mind was…. “How cute is this baby. He is SO cute!” Second… “How will I care for this baby?” Imagine having a chronic illness and caring for a child with special needs.

Complexities arise having a child with special needs.  Another level of complexity is added living with a chronic medical condition raising a child with special needs.

I began brain dumping all of my thoughts into the excellent program called MindNode. This software has been a blessing, allowing me to organize my cluttered thoughts.

pre- care plan

I was floored by the numerous areas of focus a mother of a newborn with Down syndrome is required to divide her attention. (It’s important to note: These are the areas I am assuming where my focus should go! )

It’s humbling envisioning mother’s that are facing the reality of raising a child with special needs.

What type of mother would I be?

Would I be the mother that immediately jumps in with both feet, grabbing at every available resource? OR, would I shut down paralyzed by fear?

This line of questioning landed me in the local public library.

SHOUT OUT to my future father -in-law for giving me a ride to the library (Those that don’t know, this vestibular condition has restricted my ability to drive!). Also, thanks to him for signing up for a library card allowing me to check out books.(Oops, I didn’t have a photo ID on hand! A Long story.)

Down Syndrome Books From Local Public Library
With my collection of resources from both the library and allotted resources provided from Andi, I am close to developing a care plan.

Much Love,

P.S.  My heart is full for every mother raising a child with special needs!