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Where you’re not alone…

Author ● Advocate ● Speaker

� Author “Second Time Foster Child”

� NAMI Barrington Board of Directors

� NAMI Support Group Facilitator

� Attachment and Trauma Network Legislative Group Leader

� Gubernatorial appointee to the Community & Residential Services Authority (CRSA)

� Parent “in the trench” for over 20 years

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Hoy Family1997

Daniel age 2

Chip age 3

Samantha 23 Mason & Katy 21 Chip 19 Daniel 18

Jim & Toni Hoy married 25 years

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Welcome to Holland

by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.

It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip -to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says,

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"Welcome to Holland.“

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.“

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around....

and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned.“

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very, very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

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Why You Need Support

• Maintain balance• Relieve stress• Crisis can occur at any unknown time in the future• Helpless parent syndrome• Rewarding to offer support to others-strength in sharing

experiences• Overcome feelings of helplessness or hopelessness• Group wisdom• So we can expect a better future in a realistic way• You can’t take care of others if you don’t take care of you

Confessions of a Support Group Phobe

• Putting others first/lack of self care• Feeling vulnerable• Feeling like a failure• Being judged/misperceived/vulnerable• Telling your story-had to live it• Being emotional• Too much on my plate• Compare to physical illness-get better• Fear of unknown future

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The Wrong Support

• Some parents of kids without mental & emotional challenges

• Judgmental family members

• People who blame our parenting ability

• People who think you have a bad kid

• Parents that don’t have to rely on therapeutic parenting

• Friends who think you should “lighten up”

Dealing with unsupportive people

• That we must parent differently than we were parented

• Their reference is based upon their experiences

• They may not have the inclination to understand

• They don’t want to take the time to understand

• Their lives have different joys and challenges than ours

• They might not take you where you are

• Some well meaning relationships are toxic at this time

• Some people are willing to be educated

• Ask for their help, but recognize limitations

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The Right Support

• Those offering encouragement and understanding• Respite• Therapy for yourself• Support Group• Maintaining satisfying relationships• Time away• Healthy living• Healthy escapes that don’t become addictions• Finding humor as healthy

Spouse Support

• Disability community has 70-80% divorce rate

• Triangulation compounds existing problems

• Hang together or hang separately

• Remember you will be married longer than child is in your home

• Brings out the best and the worst in us

• Back me up, shut me up, or take the lead

• Tag-team parenting

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Support Group

Benefits of Support Group

• A safe, non-judgmental environment• Bond with others that have similar issues• Not feeling so alone• Group wisdom• Not overburdening loved ones• Helps you understand others’ reactions• Improved coping capability• Emotional support• Sense of hopefulness

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Consequence of No Support

• Isolation• Enormous stress• Lack of self care• Depression• Physical ailments• Shortness of breath• Anxiety• Hypervigilance

• Weight gain or loss• Blood pressure• Unhealthy habits• Substance abuse• Obsessive/addictive activity• Unhealthy escapes• Habitational cleanliness• Secondary PTSD

Tanning Story

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NAMI Principles of Support

1. We will see the individual first, not the illness2. We recognize mental illnesses are brain disorders.3. We aim for better coping skills4. We find strength in sharing experiences5. We reject stigma in ourselves and others6. We won’t judge anyone’s pain as less than our own.7. We forgive ourselves and reject guilt.8. We embrace humor as healthy. 9. We accept we cannot resolve all problems.10.We expect a better future in a realistic way. 11.We will never give up hope!

SCORE! Get in the Support Zone

• Enhanced coping skills• Resources• Acceptance of secondary stress• ID the right support and lean on it• Marriage preservation• Less stress• Sustenance “in the trench”• HOPE!

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