What hurts the hearts of persons with #FASD?

 “I gotta get away from that kid!”  James Gideon opens your heart to FASD!

Words can be painful.

Guest Blogger – James Gideon, FASD counselor and life coach. James uses his deep wisdom to help children and teens in the justice system understand themselves through his horse program. James can be followed at FB on Flying with Broken Wings.

James is one of our beloved FASD Survival Strategy Teachers

JamesGideonGo get a full drink of water before you read this post and while you read it hold your arm out straight. The water is not heavy is it? At least not in the beginning, but what if you had to hold that glass for five minutes or an hour or a day. That little glass of water would get pretty heavy if you don’t put it down. Eh?

Well guess what?

Relationships can get pretty heavy if we never get a break from each other either. I understand that people like myself who live daily with the challenges of FASD can feel pretty heavy to others, but try to live in our skin and you’ll realize what heavy is. We’ve been holding that glass our whole lives! Imagine what our brains must feel like and our emotions must feel like never having the choice to even get off the roller coaster ride. Some days seem to slow to a normal which feels like an opportunity to stop to get off this crazy ride….  ..then @*!)… …..and then &*^%*!—swish—something whips me back into my seat and without taking a breath here I go again. JamesGideon-Horse3It may be a physical, mental or emotional thing that rips me back into my seat.  Or more likely it is a small combination of little tiny things I was not even paying attention to because life was finally going ok.

  1. I did not notice I stayed up a bit late…
  2. …then I had too little to eat… I did NOT drink any water for too long of time. 
  3. I got frustrated with a project I had been working on 

…and all of a sudden “out of no where” came a noise or a flash 

and here I go again

And I thought I had learned…
been healed! 

Lot’s of well meaning people have offered suggestions that may work for nuerotypical people, but for those of us born with misrouted paths and circuits once you are on this ride there is no getting off. It is going to continue going around and around for a lifetime.  So please don’t say “around us who struggle daily with brain issues” that people with the typical brain needs to take a rest from us.

I have heard caregivers say, ‘I need to get away from that kid he’s driving me crazy!’ In front of the child!

Imagine being that child or youth and someone who is not very stable living with a FASD. Imagine how hard their life is already. All this statement will do is compound the trouble. It is too easy for us to think we are horrible and that we are causing people problems. Think about how it must make us feel and think when we hear stuff like that. And where did I hear it taught? I heard it in a class I took when taking the FASD Course—COLLEGE!

JamesGideon-Horse2Do you know what a horrible feeling it is to hear such horrible stuff from people you are trusting as experts.

There are words that go around the neurotypicals (average brain) folks. I have heard quite often, that caregivers can take a break from us and its a good thing to take a break from us, but imagine what it must be like for the person living with fasd, we cannot take a break from it and how people should take a break from us. Maybe it wasn’t meant to sound that way but it did. And I understand that all of us need a break from time to time

  • I need a break from working every day — so I go home or I take a vacation or I do something just for fun.
  • I need a break from being awake — so I sleep.
  • I need a lunch break — so I eat.
  • I need a restroom break — so I use the bathroom.

But when you put a person or a type of person into the equation–and make it personal by needing a BREAK FROM A SPECIFIC HUMAN BEING. It becomes personal. And when you paint it with a broad brush across a whole spectrum of people — with a difference — age, creed, race, disability — it feels like bully behavior. Everyone can use downtime and I get that when you are caring for or about a person living with the challenges of FASD you are on full speed all the time. But think of how it feels when someone want to be RID OF YOU or the whole group of people like you!

Remind yourself of how you would feel if you were with a group of co-workers or friends and someone said, “I can’t stand ____, I just gotta get a break from her.”  

In many cases the person making the statement has the opportunity to leave if they choose or the capacity to find a gentle way to get a break. People with a major difference do not have the opportunity to leave. Caregivers get breaks when we finally fall asleep… ok ok maybe you need weeks of sleep by now…

Let’s be practical…
Let’s make things easier for all of us…
We have a large group of voices now speaking out as adults to help this gene ration of caregivers.

  • How can we change the environment to make life less stressful?
  • How can you encourage in a gentle way communication with your person?
  • How can you enjoy that energy inside of your person in good ways?

If a problem seem impossible to solve – turn it upside down or inside out.
Or look at the backside before you look at the front.
I know our energy and loudness can be overwhelming and exhausting to others. Guess what? We will share it! Ask your bundle of energy to share with you, ask him to sit beside you, hold your hand and give you some, give you some so you can clean, cook, run the block with him, play with his trucks cars or video games, just let him know you want some too and its not fair that he gets to have it all, he needs to share. Just to sit beside you and share it, sort of like boosting a battery, you need a boost and he is the only one to give it to you. Then join forces and give him a task to help you get something done! I still even as an adult have difficulties talking about my feelings and thoughts, sometimes I would rather have a meltdown and so some damage than to talk about it, seems to work a lot easier. But then later life gets more complicated because of it. For me I need to get myself into a gym and workout everyday even if its just walking and pushing some weights. When I have lots happening inside me I have issues of getting it out. I don’t like that part about me but I try and get through it. Sometimes it doesn’t work the way I want it too.
 And then I compare myself to others instead of realizing I am doing the best I can. And that is okay. Each struggle and each day I learn and grow stronger when I have people who love me that I can trust.  I love coaching and consulting out of the goodness of me heart, I love to help others and sometimes people don’t have the money to pay for services. I dream of opening a respite home and take in parents or children who just need a break.

Respite for all  — Parents need a place to retreat and to refresh themselves for a weekend or a week with peers they can share their stories and learn new ways of loving and thinking. AND their children and youth need a fun learning camp to give them time to refresh themselves. Believe it or not, we peeps who live with a fasd need time away from mainstream and the typical brain people, we can’t always live the way you want us to, sometimes we need to pretend, we need to run like a jack russel, we need to make believe that life is in a candy forest, we need to go through a paintball park and just get crazy, we have needs you may think are silly – but we really need to be able to let down and let go in a safe place where people understand us.

Remember – The person you love living with the challenges of FASD is SUCCESS, as soon as she steps out of bed, walks to you, hugs you, calls you mommy, she is SUCCESS. Don’t measure her success the way society measures success, don’t compare her success to others, allow her to be SUCCESS and tell her she is SUCCESS!