Friday, January 25, 2013

Juggling---- My Kids Care Map

The other day one of my favorite support sites had posted an article on The Huffington Post about "What it takes to raise one boy with special needs.  The Mom blogger had put it all in a brillant chart which what words cannot explain.  Even a chart does not begin to show all the connections and complexities of the life that a parent/caregiver of children with special needs.

I was inspired, after 23 years of walking this life I know my job well.  I have written our lives but still nothing can explain "just" how complicated it all can be.  Trying everyday to do all we can for our children all the while managing the complexities of the differing places that work with our children. I knew that a piece of paper was not going to be able to fit my Care Map.  The little guy's easel became my tapestry for my ongoing work in progress. (This is not done, but just the beginnings).

I started my care map not just for my daughter Becca now 23 with a severe form of Noonan Syndrome, but my adopted daughter Detamara with Fetal Alcohol Syndrome 20, and our latest soon-to-be permanent addition to our family known right now until finalization as "Little Guy" who has an unknown genetic disorder and full Fetal Alcohol Syndrome.  I left off the chart the launched 4 with FASD who at times call on Mom to put out fires, offer solutions, advice or prompt on how to manage their own care charts. Just another part of my neverending juggling act.

I drew my hearts putting into each my most precious gifts names. Then I began with breaking it down into Medical, Systems/Financial Supports, Then school and all.  The ovals each contain one place/specialist/one program for each of my kids.

What it doesn't show are the complexities of how each program is garnered by what funder, what it all takes to get and keep those funding streams, or qualify for them. How they all interface and the beaucratic/insurance red tape that frustrates me more than anything. Then all the countless phone calls, hours running, documentation, follow-up. Then add the fighting to get the recommendations prior authorized, get those recommendations to the appropriate providers and then continually following up on all the beaucratic red tape.  We as parents have to learn the rules and regulations and the "systems" for each of the programs are kids are involved in.

We have to become experts in balancing all these balls all the while juggling our children/adults with special needs and try to maintain some sense of normalcy in our lives, much less trying to manage a house, relationships with spouses and other children. Is it any wonder why families fall apart under the stress?
Too much, yes sometimes it is too much, we step back for a moment, find a parent or a friend in this world who understands, take a mini-respite and we find the strength to continue on doing it to the best of our ability because we have to.

I have learned to become an expert in Insurance regulations, Medicaid law, IEP rules and regulations, long term community supports, Occupational therapy, Physical Therapy, Nursing skills, ABA therapy, care coordination and at times even had to unofficially practice law when no disability rights organizations knew how to help me.  I had to learn to read medical jargon, recite it, understand it, sometimes, knowing more about my child's condition than the professionals.  That is a scary place to be. I do not want or will ever get used to that responsibility.

Many people ask how I have done it. You just do it. I lived and grew through the chapters of Tiny Titan, One Small Gift. Continued to grow through the Chapters of Tiny Titan, Miracles by the Dozen, and still learning as I move on to living the next book, Tiny Titan, One Small Surprise.  It was out of necessity, one step at a time. I learned to get my PhE.  My Doctorate in Becca. I have since gotten my Doctorates in DJ, Shay, Deangelo, Delonzo, Detamara, and now my latest degree with Little Guy. 

Does it get easier, probably not. You learn to cope, you learn the systems, you learn that you  are the experts in your children and how to play the game.  But after the fact, I doubt myself. I replay the appointments, meetings, etc. thinking did I say that right, were they listening, did they understand.

What I have learned in 23 years of parenting my children.

I know them, I may not know why or how, or what it is, but I have learned to trust my Mom instinct. I am the expert in my children.

I find support, I find listening ears and knowledge in my extended special needs family. Though we may never meet in person, we are friends of the heart as we walk the walk together. We help keep each other sane with venting, brainstorming and celebrating the milestones.

I know that living under the microscope of all these professionals, systems, and having them in our lives are necessary for my children to get services, supports and flourish.

I know that the providers, systems, etc. expect perfection, I cannot forget an appointment, I cannot be human and not follow up on something. I cannot be tired.  They can forget and not be perfect, but parents are held to a higher standard.

This job is not easy... it is close to impossible, not because of my children, but because of the complexities of the care systems with the funding stresses, ever changing rules and regulations and just all the barriers that come before us to get needed help. And it always takes way too long and takes too much energy and causes way too much frustration.

I know that I will do anything for my children and will find the strength to do whatever is necessary despite my fears, inadequacies, and shyness.  Do not mess with a Mother on a Mission.

I will do anything for my children.


  1. Yay, you're back!!! Can you give me the links to your other books? I have the first, but didn't know about the others.

  2. Your blogging inspired me to get back going. I sent you a PM on facebook and the two books are both contained in the original hard copy of Tiny Titan, Journey of Hope. I separated it out for Kindle and made the First Print on Demand. I need to go back and edit rewrite the second book and get it out on Kindle. But with a two year old and Becca... it will wait. The last book is what my publisher is already planning for, but have to live it first:)