Thursday, December 24, 2009

The Will to Keep Going

We struggle with that, in all our lives, in the face of many of the obstacles that we each are confronted with. Not all of them involve our disabled children of course. For some, it's their job that is a nightmare, or lack of one. For some, their relationship is disintegrating in front of their eyes. For some, it's the betrayal of a friend or family member. For some, it's receiving a diagnosis of a deadly disease. For some, it's an injury that prevents them from ever doing the things they loved to do before.

Point is, we all have these enemies to face, these chasms to jump over, these mountains to climb. Many of you are fortunate enough to have Faith. That's a powerful, POWERFUL ally to have in your arsenal of daily weapons. I envy those of you that have that. I, at present, do not.

But I do have some weapons, and one of the most powerful of mine is all of you. You, who read these pages, who clickety-clack the occasional words of encouragement. You who always offer some advice, relate an anecdote, or just bestow upon me the much under-rated 'Attaboy'.

Last week I received a private e-mail from one of you. It was so touching to me I asked the sender if I could share it, while keeping the sender's name anonymous. Consent was given, and for that, and a lot of other things, Oh Sender of the Aforementioned E-mail, I thank you.

Because THIS is the type of thing that really motivates me. That supports me. That keeps me propped up. That gives me the will to keep going.

Dear Ken,

You know, I really believe in the power of early intervention. And ever since I started this job six years ago, I have really tried to figure out ways that the program could meet the needs of parents and children.

I thought because I shared in the struggles my families were going through, that I was listening. Your blog has taught me that I haven’t been. I’ve been looking for solutions (which has its place), but I hadn’t ever really just stopped and listened. Not with my “early interventionist” hat on, but as simply another person. Wow is that hard!

I have to confess, your blog hasn’t always been easy reading. The rawness of your emotions has challenged everything I deal with on a daily basis. In the “helping” profession, we want parents and families to accept what’s going on and get on the bandwagon already so that we can hurry up and fix things. Or, if they can’t be fixed, then at least maximize potential (or any other of the thousands of euphemisms we use so frequently).

There are times when I have read your thoughts and responded with some rather horrid thoughts of my own. And was astounded to find those reactions there, lurking just beneath the surface. I started wondering how often those thoughts have affected how I work with the families in our program. With the ones who are taking too long (in my opinion) to accept things and move on.

The conclusions I have come to are that early interventionists as a group, and myself in particular, do not give families enough room to grieve. After all, we have an agenda and deadlines to meet. It’s a delicate balance, coming into someone’s life and home and trying to figure out when to push and when to just sit back.

From you I have learned that the most important thing to do in trying to support a family going through such tragedy is to learn to look at things from their perspective, to ask how we can help, to let them set the pace even if it differs from ours.

Anyway, I know that I am not the same person I was as a result of reading your words and, as I train new staff, I hope all this self reflection can result in positive changes for other families. You have wondered several times whether you should be so explicit about your emotions in your writing and I want to urge you to continue doing so. It takes so much courage to be that real about something so personal. And it has taught me that what I think someone should be feeling is not what they necessarily are feeling so I’d better ask. And then I’d better be prepared to hear the answer.

Thank you Ken.

Pretty nifty, don't you think? It was very special to get a letter like that. They don't often find their way to you. So I'm glad the sender allowed me to share it. It's stuff like this that I gain strength from, stuff like this that inspires me.

Enjoy your Christmas Eve's and Christmas Day everybody. I will be struggling through mine, but that's OK. I've been struggling for quite a while now, and I'll get by. I'll figure out a way to walk the tightrope and not fall off, I'll manage to grab on to a few nuggets of coolness to remember down the road and I'll focus as much of my attention as I can on my kids. I should be able to quiet the enemies outside my castle walls, at least for a little while.

Hope you all find a little nugget of joy in each of your stockings.

Take Care and Merry Christmas...


  1. Wow. How great is it that your blog managed to change someone's perception like taht. Pretty awesome.

    Have a Merry Christmas.

  2. Very cool. You and the person who wrote that email might want to read this's very good and a propos.

  3. This is Joyce. Ken thank you for taking the time to share that and WOW, I am so impressed that someone on the "otherside" gets it. And gets it so well. I hope she/he will also share their insight with others in the EI field.

    Hope you find more nuggets today than coal. Merry Christmas and as Miss Congeniality just said, "I really do want world peace." What can I say, Sarah is sick in bed and she's addicted to Sandra Bullock:)

  4. That is an absolutely amazing letter, and so well deserved. I hope you guys had a great day.

  5. Fantastic, well deserved letter. We need to tackle the obstacles one day at a time ... as you do, as I do.

    Wishing you and yours a great holiday.

  6. LOVE this, Ken...You are changing attitudes with your words!!...Keep doing exactly what you are doing....

    I think your blog, as well as a few choice others (Y'all know who you are!) should be required reading in college special education!!!



  7. It is said, that if you changed one person, you changed the world. And if you touched one person, you'll live on forever.

    Christmases really suck for me, and it's never easy, especially this year, that I didn't have time to have my psychiatry appointment before the holidays, so I really wasn't prepared.

    But like you said, that you'll struggle through yours, I'll also struggled through mine, and I'll do it again for New Years.

    Happy thoughts.


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