My mission in life – the end of little

JodeeKulp-Outside
I thought I left the issues of alcohol when I left home to start my adult life.

I had no idea it would be those hard years as a child that would prepare me for the most extreme adventure of my life and provide my life mission.

To discover tools and strategies to empower persons with life challenges.

To help them thrive in spite of the trauma and damage done before they were born.

Thirty years ago in 1986, I read the Broken Cord, a book about Fetal Alcohol Syndrome. And I thought  — “You know what? I could raise one of those kids. I could figure this out to make better outcomes for them.” That was a cause I could learn to understand.

I could never have been more wrong.
I had no clue what I was thinking.

Little did I know...Little did I know, just months after my bold thought, I would hold a failure to thrive baby. And that she would soon become a permanent member of our family.

  • Little did I know that this precious person would live to dance and sing also bring joy, knowledge and hope to others.
  • Little did I know when we signed the adoption papers, how hard this extreme parenting journey was nor the cost of the everyday trauma.
  • Little did I know that until she was almost thirteen that the root cause — Fetal Alcohol. Static Encephalopathy — permanent brain damage was hidden to professionals, educators and we (the parents).

At diagnosis the doctor said,
“She will reach a plateau there is little you can do…”

That was the END OF MY “THIS IS JUST A LITTLE THING!”
This issue was huge.

My daughter and then many other children entered my door through friendships and foster and support services. They captured my heart, suffocated my affections and stole my spirit. The whole thing was a far bigger issue than I had imagined reading the book. In the midst of the chaos and heartbreak of loving, living and laughing with these children and adults I broke. I felt isolated and alone. Friends with more typical children no longer participated in my life. Events I enjoyed were set on back burners as the sensory overload traumatized our daughter.

There were limited answers and enormous misunderstanding at the church, school and community. Judgment and a never-ending quantity of minute‐by‐minute needs sucked me dry and erupted into physical issues. More than once it almost destroyed our marriage.

I thought the more I sacrificed the more I could fix things around my daughter.

So I shut down a business and layed off twenty‐two families we supported. I came home to home‐school her. The child thrived but our finances moved from the ability to provide to living simply. The joy was that we discovered methods of teaching and strategies for parenting that worked for more than just our daughter.

Life worked in our new knowledge while I parented and was in control. Then she turned 18 and word on the street was, “When you’re 18 you can do whatever you want.” Our daughter literately interpreted the word ‘whatever’ to really be whatever. For years I felt as though I was running down the up escalator trying to get back to square one.

Life never seemed to get easier.

But each day as I opened my eyes I realized I was still alive. So, I put a smile on my face and set my strength into the wind to tackle what more was coming against us.

I decided I needed to understand the people living with cognitive challenges from the inside out.

I needed to partner with more of these people living with challenges like FASD, Autism, Aspberger, ADHD, Learning disabilities etc. Once I did that, I was welcomed in to gain understanding and work with the adults to help families. I became the cognitive translator for them between the strange world they had to navigate in their daily lives. I translated in medical, judicial, financial and social service settings. Thanks is given to the adults who willingly shared their lives with me while I learned I was able translate well.

Over the years, I have pulled together people and ideas, shared and dialogued to get results and to help people and families thrive according to their own abilities. And most times, I have found ways to balance my own life as a human being—the family me, the professional me and the plain old just me.

It is the little things added together that create the tools to allow me fulfillment of my mission.
To train people to new levels of understanding, empower parents and add balance back into chaotic lives.

Now that you know about me I’d love to hear more about you. I’d be super grateful if you could introduce yourself in the comments below and tell me the ideal outcome when it comes to allowing yourself and your family to thrive according to your own abilities. Don’t feel pressure to produce a novel. I just wish to get to know you a bit.ave

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12 thoughts on “My mission in life – the end of little

  1. Crystal Joncas says:

    I’m happy that you thought to go and get extra information and stuff like this to help your child but I think all schools and all special needs teachers should have training really good training for fetal alcohol Spectrum for autism for any type of illness because I have a child that has fetal alcohol spectrum and the school knows nothing about it and trust me I can tell and I’m supposed to trust the school with my child it’s very hard very very hard

    • Jodee Kulp says:

      I agree Crystal – and we both know how hard it is to parent these kids and teach them… The teachers have a huge job also with the increase in complex children sitting in their classrooms. Our kids are the tip of this Iceberg (thanks for the graphic from the original FASfri folks who walked this path before our generation) We need more training and more understanding and more education. And hopefully while your kiddos are in school, you get a small break to breath so you are ready for them when then return home. Thank you for being a parent of a complex child. I appreciate the job you do. I understand.

  2. Dianne O'Connor says:

    One thing I did figure out over the years with 6 kids with FASD was to let the teachers do the job they were trained for. I then was able to concentrate on getting the day services in place for my kids as they transitioned to the adult world. Our success is that each child graduated from high school, no one has been jailed ( although we flirted with the possibility) and no one got pregnant while in school. For many, that does not seem like a lot, but for us, it is a miracle.

    • Jodee Kulp says:

      Great idea Dianne. We only have so much time in a day to supply the supports ideas and help for these kids, teens and adults. Graduation is a BIG celebration. Adulthood is the next tough step and somehow we have to build the understanding that with supports they can live purposeful lives.

  3. Laura Warren says:

    Wow, do I ever agree with Crystal! It seems that all the professionals we deal with, at school, in therapy, psychological counseling, doctors, etc all need to be educated about FSADs, before they can really understand my daughter’s needs and challenges. I have been on the receiving end of far too many of those “Surely you are exaggerating” looks from professionals who are suppose to be helping us. Most of the time the professionals believe they have the right skills and knowledge when the say ” trust us to do what’s best for your child” . It only takes a few interactions for us to see that they don’t know where to begin. Do they understand that “behavior modification doesn’t work with a child who can’t generalize from one situation to another”. It also seems that they also don’t comprehend that treating a child with an FASD with the standard Special Ed approach contributes to my child’s secondary disabilities. She has a typical IQ but is in no other way typical. Thanks for all you have done and are doing to raise awareness of the needs of families with an FASD diagnosis.

    • Jodee Kulp says:

      Oh Laura, we most certainly are not exaggerating, in fact at least for me I mostly understate and even that overwhelms the general population. Hopefully in this blog and new endeavor I can share some of the things I have learned that have made a difference for my family, myself and the people we love living with the challenges of FASD.

  4. Jodee Kulp says:

    Schools and teachers need specific training. But it isn’t just the training, it is the understanding. Our kids are different in how the interact and live in the world. I often think how hard it must be, and what strength of character they must have to face such challenges everyday. My hope with RealMindz is that we become a place where you can find the tools and words to empower the people you love while creating the bridges into the world where they must navigate. Please continue commenting I am out of town for some days with a dear friend.

  5. Nancy Thomas says:

    I am so glad you are bringing more awareness to this! Your picture of “running down the up escalator” endlessly is right on! Parents and teachers are exhausted trying to find answers to help the children as they struggle to learn and fit in. I continue to seek and find answers to healing their wounded brains. We all must speak out loudly on the effect of alcohol and drugs on developing brains to help stop this tragedy. Thank you, Jodee, for what you do!

    • Jodee says:

      Thanks Nancy
      If you have new information you find and want me to share or collaborate on let me know – as we learn more about the brain and trauma and work together we will move wholesome and effective strategies forward for all families and individuals

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