The BIG EVENT living with the challenges as a adult with #FASD

rjcat
R.J. Formanek is the founder of Flying with Broken Wings on Facebook which now has over 1000 members flying together.

 

Special thank you to guest blogger
— From R.J. Formanek –

R.J. is one of our beloved FASD Survival Strategy Teachers
And so this is Easter or Passover or Christmas or the BIG CONCERT. . .

We’re down to the home stretch now, only a few more sleeps to the BIG EVENT.

My son goes to spend the holiday with his mom, because as every body knows – nobody NOBODY does Christmas like MOM! 🙂 

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I don’t do decorations or lights or … ask your kids what overwhelm them and find a quiet alternative.

That leaves me and two cats to have fun ourselves.

And we do! They get presents and some special food too! 
  • There are no decorations at my home, no sounds of Christmas choirs or jingle bells.
  • While there are a few paintings and prints in the living room, my own room is bare white walls, save for one small picture of my daughter.
  • I hide the modems because the blinking lights tend to throw me off after a while. And between the computer, the cable box and the telephone we have a whole lot of blinking lights all over the place. So, no need for Christmas lights as far as I’m concerned! LOL!
It sounds bleak to some, but to those of us living with FASD it feels safe and comfortable.

There are times when we just need a break from all the lights and sounds and my home is where I can do this.

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A snuggly blanket – warm and safe – this is the prayer shawl Jodee Kulp wraps herself in. Each stitch was knit with a prayer for her.

Being a safe place for me sometimes means the exact opposite to my apartment though… it’s the place I can let down my guard and show my frustration at the world, or myself in that world. It’s where I giggle like a little kid while wrapped up in a snuggly watching cartoons, or at this time of year It’s A Wonderful Life. It’s the place I can stop and try to figure out the world outside. It’s the place I melt down.

😦 It’s also the place I build myself back up again. 🙂

Through the years I’ve had to learn to become quite a handy man, thanks to this “thing” I’ve fought all my life.

I can mend a door, change a window, patch a hole and paint like there’s no tomorrow.

Sometimes though, I don’t repair these things… I leave them as a reminder of what can come to pass. People see this damage and go “oh that’s terrible” and all that… but what they don’t know is that same damage is forever imprinted on my soul. I’m not proud of that damage, it’s not something I ever wanted to be responsible for… no it is a shame I have to bear. And not forget what can happen IF I allow myself to get into that frame of mind.

Understanding FASD has made me understand just how very important self soothing is to an adult like me.

There is no one else to do it, and I can’t be melting down or shooting off every time some thing does not go to my liking. Having a person I can trust as my external brain helps me understand many things, but some times I am the only one who can prevent or at least lessen these things from happening. And that is just how it should be.

If I want to be independent then I have no choice but to accept and deal with my own actions.

“I am the Captain of my fate; I am the Master of my Soul”. Understanding that it is because of the FASD that I have a hard time regulating myself emotionally has given me the tools to “fight the beast”.

Knowing and understanding has made all the difference.

I’m so much better than I used to be in this area, but sometimes I still kick a door jamb, or suddenly let loose with some loud expletive… but it is getting better and better. I never thought there was any way to fight this, but I am learning that knowledge really IS power. I CAN beat this thing and I will.

Taking care of myself… eating, sleeping and that sort of thing and a good amount of physical exercise also help to no end.

It is reactive anger and I work at stopping the reaction that causes it to spill out into the world. 

No one can see my confusion and pain, nor can they see my frustration.

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Sometimes I just need to GET OUT of the event! To regroup and be able to return at peace.

I get frustrated that I feel like this, and that leads to added frustration because I feel frustrated for feeling frustrated. Make sense? No… but that’s what it’s like… sometimes it’s a loop I get stuck in. Fun, huh?

So, this holiday season don’t forget how all these sensations and emotions can give us need for some quiet time, for a place we can just relax for a bit. I have to hand it to a great friend and her family… they invite me for over to celebrate in friendship and don’t bat an eye if I suddenly have to go outside for a walk, or stand instead of sit, or walk from room to room… or just sit quietly.

I really enjoy being able to share the festive season with them all.
Everyone I hope you all have a Wonderful and Safe Holiday time… no matter your beliefs or values, we could use more of this “Peace on Earth” stuff!

And that is my wish for each and every one of you**********P E A C E**********

Expressing a voice for the voiceless encouraging the building of better baby brains – http://www.betterendings.org

2 Big Tips to Tackle The #FASD Anger Monster by R.J. Formanek

FASD SURVIVOR TEACHERS  From Left to James Gideon, Myles Himmelreich. Emily Travis, Tanya and R.J. Formenak
FASD SURVIVAL STRATEGY TEACHERS – Thank you – We look forward to hearing real wisdom from our guest bloggers in 2014!
From Left to James Gideon, Myles Himmelreich. Emily Travis, Tanya Northcott and R.J. Formanek

Special thank you to guest blogger
— From R.J. Formanek –

R.J. is one of our beloved FASD Survival Strategy Teachers

Learning how FASD affects each of us individually can make a huge difference in understanding and managing our anger.

  1. We can learn what our sensory needs are and how to take care of them.
  2. We can learn how to deal with people in public so as not to be embarrassed by our own actions or words…

But, and here’s the BIG BUT!
first we need to accept and understand.

Many ignore the fact they are living with FASD, and this is one case where what you don’t know can hurt you, but once the light is turned on and we begin to understand ourselves… not through someone else’s eyes but through our own hearts and brains we can learn to lose that anger. We can calm down… but understand that we may always have ‘short fuse’ at certain times, and that we may remain a ‘work in progress’ for some time.

Anger can take on many forms and for many reasons.

  • If we are talking reactive anger to a perceived threat or insult that can be one thing, generally emotionally based.
  • If we are talking frustration based that can be addressed short term as many have stated above; long term – sensory needs, past trauma as well as any lingering secondary mental health conditions caused both directly and indirectly by FASD need to be checked as well.

Now RAGES… that is a whole different monster.

And I do mean monster. These are the total meltdowns that get us in trouble, the ones that destroy things and hurt people. These are the ones that give us such a bad name with many.

What ever the immediate cause, RAGES are the result of physical brain damage. Short and simple. Many of the “higher learning” centres in our brains are scrambled at best, destroyed at worst and there is almost no way of knowing which ones will still work, and which won’t. But our brains are amazing things, because underneath those higher learning centres is a base… an “animal” or “reptilian” brain that is largely in charge of the functions we don’t even think of… temperature control, physical needs (hunger, thirst, water etc) and defense.

When we feel threatened our brains which may or may not be able to understand fully what is happening may revert to the base “fight or flight” syndrome and react accordingly.

This can often be the end result of too high stress levels, emotional trauma, or pain of some sort… or actual physical danger. It’s the same thing that makes people scream and jump when they see a spider dropping towards them from the ceiling… we all have it built in… but it just serves our FASD brains a lot more than a neurotypical persons’ might.

Understanding rages is very important so steps can be taken to minimize the number of them, and understanding how to recognize the signals and take steps to head off this oncoming rage can make a huge difference.

Sometimes, a punching bag is a great investment.

And remember – When you know one person with FASD you know ONE PERSON with FASD! – That’s it! Alcohol destroyed different parts and connections in each of us…. Yes, we are a big puzzle!

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
…. YIKES!

And I thought I had learned…
changed…
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!