Day 4 A Worried Parent Does Better Research Than the FBI

Day 4

Twenty Six years ago, I stepped into the world of parenting my medically complex child with Noonan Syndrome.  Months in the hospital and many painful procedures she would have to go through.  I got a crash course in navigating complex care in the medical world of special needs. With her journey with Noonan Syndrome and all her medical trauma, my daughter would fit into the Alphabet Soup as well.

Those lessons learned with Becca in the medical world, would season me steeping into my adoption experience.  The world of parenting complex children who have a history of trauma, abuse, neglect, prenatally exposed to alcohol and other toxins and their genetic predisposition of mental health needs and addiction from their biological parents.  I learned that I would need help from multiple systems and I found that the road was so much more complicated.  There was no road map and I found the system broken and traumatic for all involved.  No one could help me and I found that I had been licensed to parent children who there was no evidence based practices, no diagnoses, and little hope or help.

I was told that the oldest two we adopted at 13 and 16 were beyond help as they aged and when I reached out for help in the teens I was told time after time,  it was too late for them. To focus on the little ones who I could make a difference with.

I had made a promise to my children that I was not going to be another adult who failed them like so many others in the past.  I learned much on my journey and I made a promise that I would help others walk find help and hope.

I wrote Tiny Titan, Journey of Hope to help others understand the journeys of those families living in with medically fragile children in Part I,  One Small Gift.  Part II, Miracles by the Dozen for those Parenting Children with FASD and the alphabet soup neurodevelopmental disorders and of Childhood Trauma and other learning differences and of course foster care and adoption issues.

Sharing my story and helping parents helped me to make something good happen out of the hard lessons and trauma's of the journey we have lived with my children with special needs and the complexity of navigating the roller coaster of living, learning and parenting my children with complex needs.

I was just a Mom and I had to learn too much to help my children. I would earn my MDE's, my PHE's, my Masters of Social Work by being in the trenches. Instead of spending sleepless nights worrying, I poured myself into the internet, books and researched answers.

One of my favorite quotes is "A worried parent does better research than the FBI.  I add, We have no choice.  "While the Professionals Read the Textbooks, the Research, look at Evidence based practices, the parents read the children. We analyze the day to day everything and we have learned to trust we know our children."  We look at finding the best, finding answers, and never giving up.

I did not learn everything overnight, it would take years of listening to what they were telling my by their words, bodies, moods and behaviors.  Being a detective of sorts to find HOPE and HELP for my children.

In these posts to follow, I hope to share the bits and pieces of our journey, resources I have found helpful and be an encourager to those who are Parenting Complex Children with Neurodevelopmental Challenges and their Alphabet Soup of Diagnoses.

Anny

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