My Parents Need Respite, They Need to GO!

Written by James Gideon for his ten-year-old self
James Gideon is currently Program Coordinator: Enhanced Extrajudicial Sanctions Program (Diversion Program), Equine Assisted Life Skills Training, FASD.S.C. that stands for FASD Support Coach, Youth Worker – His insight continues to challenge families and caregivers to help understanding their children living with FASD

Visit http://www.thechancerchronicles.com to learn more about growing up with fasd – the Winokur family offers insight on being ten!

Dear Live Abilities

I am a 10 year old living with two parents who I need a huge break from.

They are constantly telling me I need to do this and do that, all I hear is blah blah blah, really that’s what I hear when I get overwhelmed from all the talking.

I don’t like to go to bed early, I enjoy staying up late and playing video games, when they come into my room and tell me ok time to go to bed now, I freak on them, always invading my space. They talk about me invading their space, do they not get it, they are in my space — my room and my bubble. You see, after the sun goes down and the world gets quieter I can began to think better. The lights are lower and the noise is softer. And I can feel safe in my video game, I am already up a new level. In the morning all the crazy busy starts again and — deep breath — well it is just hard hard hard.

I hear my parents telling other people we have to normalize FASD. What the heck are they talking about? Normalize FASD? Yeah right. I know, I know, normalize it is what they hear from coaches who don’t understand what it is like living in this world. I don’t seem to react like everyone else. But, this is normal for me.

Maybe my parents need to get normal, maybe all of society needs to get normal.

WHAT IS NORMAL?
I go to school and come home and my parents ask me 50 million questions and my head spins. I try to remember the first question they ask me and soon all the words get all mixed up and so do the questions. My mind just needs a rest when I get home and I need something good to eat and maybe some down time or shooting some baskets.

They flip out on me when I don’t do good in school. I hear them swear underneath their breath and then they tell me not to swear.

I think I really need a break from them. After all they gave me this idea about respite. They said they need a break. That’s a good idea. I like that idea! I want respite and I can send my parents off some place so I can get a rest from them. They make my head sore. They talk about me and think I don’t hear them. They repeat things all the time.

I hear you. I hear you. I hear you. I just can answer yet, the words are there and then the other word stomps on them and I just need some time to answer.

When I ask for something, they stare at me like I am stupid. I wonder what is wrong with them. I don’t think they know what they want. They tell me I don’t know what I want. They say I am always melting down. Guess what they seem to be always melting down or they run to the computer and go away in their minds and talk about all kinds of things.

Worse yet, when they get off the computer and are together they scream at each other. They ask each other how come we adopted him? They say well just look his mother is this way and she has done this and that. Well I have not done this and that. I am only ten years old. I am a kid living in a world where everyone talks really fast and everything sounds really big and everything looks busy. I need my space Live Abilities — do you hear me! I have to ask myself, ARE THEY NORMAL? If they are normal I don’t want to be that.

They say we need to make FASD normal for me, but is that the way it is? I don’t know, I need respite. I think I should just run away and then I don’t need to deal with them. They say hurtful things to me. They blame me for ruining their life and how expensive I always am. They have so many negative things to say about me or at me. They talk to others about how bad I am. Do they know that they are also bad to me.

I need respite for them, send them away so I can get a rest.
Somebody help me!

 

Dear James,

This is your friend SavAnna. I have FASD too and I am a trail guide and navigator to kids and teens like you.

I am an FASD Survival Teacher.

FASD is a hard challenge and I am sorry you are having trouble with your parents. I am now an adult and a mom so I can feel your pain. Tell me more…

James: SavAnna – they want me to go to camp and meet new people and have fun with friends – don’t they get how hard that is for me? How hard NEW is? How hard CHANGE is?

It is like they are putting me at the edge of a cliff and pushing me off. Do other kids fly? I think my wings are broken.

I cant go, I have video games to play and I know how to play them. I have worked really really hard to do them well. I have friends here I want to play with. I know them and they know me. I know they won’t bully me. I know they won’t say bad things. They are okay that I am different. I have things to do here at home, they can go. NOT ME!

SavAnna: Oh James, I am giving you a big loving hug and pretend I am sitting right next to you like a kind sister. Our safe place is truly home. You have to realize that your parents are called neuro typical. That means their brains work like many more people than yours or mine. It doesn’t mean you are less, you are just different. When your parents are frustrated and the world is uncooperative they can go and discover downtime and get relief. For us when feeling overwhelmend we don’t really want to be fighting the world out there too!! We have to fight in our heads and bodies everyday to just keep up. Home is safer, stabler, and better to decompress at.

I think we should talk the neuro typicals who have many more resources than we do and many more opportunities into designing a retreat place just for them so they can take time to heal and learn how to come back and love up on us. Do you think someone could get them a grant to do that instead of paying people to try to figure out us?

After all, it will be much easier for them to change each other than for us to become them… even before we were born that opportunity was taken from us…

Love and much hugs, your big sister, SavAnna

Crazy Chatting About #FASD We’re Listening.

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

Parents/Caregivers/Professionals and Persons who do not live with FASD inside them:

There has been some crazy chatting happening this week. We are in the midst of SPRING—and that means seasonal change. The whole world that was sleeping in the winter is popping into life and it is getting very loud everywhere. We are seeing, hearing, feeling and smelling a world that is bursting with new energy. People who plodded through the snow are running again. Everything has speeded up with living. Acting out happens when we are way over our heads—in change, in communication, in learning, in living.

Those of us with non-traditional bodies and brains seem to pop into strange behaviors as we make this transition. Together as a team of adults we are working to come up with ideas to help each other and ourselves.

Recently a number of older adults who live with FASD have banded together to help the next generation in love and wisdom. We hope that together as we share ideas and experiences from each other without judgment we can discover new roads and ways to make a difference.

Together we can change opportunities and living for the little human beings growing up today with FASD. Please use the wisdom and life experience of those of us who are giving insight to help the next generation of children, to heal the hearts of the adults and teens moving to adulthood. Please help us feel normal and not like a monster.

Please learn about our brain differences.

We are made differently, we are not less of a human being but we are different human beings. Our world is very different from the world you live in and no matter how hard we try we are only able to walk in your world for short moments and then our FASD world captures us again. It is during that time of capture when we are trying SO SO HARD to stay in YOUR WORLD and be in your world and participate in your world that the chemicals in our body and brain pull us back under the deep, dark water and we drown in a tsunami as we struggle loudly to survive.

Because of the way my brain injury works I can be inappropriate if overwhelmed. As I’ve learned more about the way FASD affects me, I have learned to feel the upcoming signs and I have learned to distance myself and use a healthy self-care program. When we are over stimulated, overstressed and overwhelmed our brains may see a small event as an attack because it becomes joined with many other small events both positive and negative. Our brain tries to protect us by lashing out at whatever seems to be causing the problem to make it go away. Relationships are important to me. I keep trying.— R.J.  Formanek

Many hurtful things have been said about us. Let’s look at this big mountain and work together in love and kindness to help move it.

Sometimes we just need a PARACHUTE HAMMOCK to get out of the way of ourselves

• People with FASD should know how and when to forgive—so let’s figure out a concrete way to do this on both sides.
• People with FASD should be able to apologize for real with sincerity—let’s lay down our verbal weapons against each other and work together
• People with FASD have to learn to control behaviors—let’s learn on each side to not engage in these behaviors—let’s discover new ways of communicating our needs in safety.

o   Swearing at people

o   Yelling at people

o   Refusing to cooperate

o   Refuse to take responsibility for actions

o   Being late

o   Missing appointments

o   Destroying property

o   Stealing stuff

o   Make a mess and not cleaning it up


o   Making too many demands

Relationships are reciprocal—You know what folks, WE TRY. There is plenty of work to be done…

My question is:

Are you going to be for us or against us in learning FASD Survival Strategies?

You may not believe it but our behaviors break our hearts too. Our behaviors frustrate us. It really hurts us when we hurt someone close to us—when we say something without thinking or cause physical hurt or break something. We want to control everything.

We see what we do as we are doing it. Our verbal, emotional and physical brakes quit working. It is like trying to stop a train wreck only you are the engineer inside the engine and the front panel has switched off. If we zone out we may have flashbacks of what happened. Or people tell us. Or we see ourselves in InstaGram or another social media site. Ouch! It seems that when things are going too good we sabotage ourselves. We do like our parents. We like our adoptive parents. We know we are hurting you but there are times it’s so difficult to control ourselves when our brains don’t function right.

Many times we feel an apology isn’t going to do any good anymore. We go away. We may not go away physically but emotionally we crawl into a place that is dark and sad and lonely and we stay there. We don’t want to associate with anyone because we have done enough damage. We don’t enjoy hurting others. We want to control those outbursts. But there are times we feel like a monster inside. There are times we may act like a monster. It’s because that’s how we feel.

We are not monsters. Folks who live with a FASD need to be encouraged and empowered to make healthy, good choices and to know that we are okay, that we are not monsters, we are not a burden, we are capable of doing and making our dreams come true. We are capable of purposeful living—of being successful. Of making positive differences in the lives of other people.

Darlin Dee a parent of a child with FASD here…

just popping in to encourage all caregivers to take a step back from the emotions/frustration that you may be feeling while raising kids with FASD. Since meeting James last year our family has forever been changed. Him along with some other adults living with FASD have really inspired me to step back and change how I view parenting.

Society may not agree with how we are approaching our little one but man it works. She is hurting, she has struggles that typical parenting does not work with.

I know that now…and our days are filled with love, laughter and support for who she is. She does have her moments but we know to support her with Love…Love will make each day better. Find it in yourselves to take time to heal your own stuff and triggers…this is a new way of looking at things and it works 100%. Love based parenting—shift the paradigm…you can do it! You have cheerleaders here to help!

Mark (EB) and SavAnna (FASD) sharing relationship insight…

Misunderstanding FASD symptoms and the brain damage caused so much pain in how we related. We both fought to have ourselves understood. The relationship between us in the first few years was failing and we were realizing it was becoming  mentally and physically dangerous to both of us so we went together and met with doctors and counselors to try to find help, they truly did not understand FASD and told us that Savanna would never in her life be capable of having a successful relationship  (that was almost 6 years ago!).  Until I started to truly understand FASD from an external brain perspective I too felt despair and hopelessness as so many people do who care for people with FASD.

• Reading about it helped.
• Attending training brought clarity to the mystery of the behaviors
• The real change occurred from learning about other people’s experiences as well as our own.

It was trial and error.

And there were many, many errors!

And there is . . .

ALWAYS NEW LEARNING.

Just last week I learned to not inadvertently cause her undue stress surrounding an upcoming event by counting the days down to the event and showing over excitement which can so quickly lead to causing a meltdown.

Now after years of in the “trenches hard work” we have finally come to a peaceful place where we both have willingly changed the way we

— relate,

— communicate,

— act and

— respond to each other…

Our lives have changed and the relationship is interdependently successful!

There are so many tremendous people on this site who openly share their knowledge and help so many people across the world … God bless you all.  My sincere message to all the external brains is that if you take the time to learn and understand FASD, not only will your life be enriched by the wonderful person you are caring for, but your life will be so much simpler and easier and mutually, joyfully fulfilling.

I am sorry if I am not what you asked for, but love me please and bring me up knowing what you know, kindness, love, understanding, gentleness, joy, and peace at heart.

Thank you.

James Gideon