The Hardest Word I’ve Ever Said — 5 Minutes for Special Needs

The Hardest Word I’ve Ever Said

by Laurie



                               

Seven years. Over a thousand hours at hospitals and specialist appointments. Countless interventions at home. And it turns out the most important word to help my daughter’s treatment is this:

NO.

No… we’re not doing a nineteenth round of medication adjustments. It’s time for hospitalization.

No… I won’t take her home from the hospital and keep doing the things that haven’t worked in the past.

No… I won’t take her home, period. She needs more help than we can give her. It’s time for residential placement.

No… We’re not going to let her case be assigned to an intern at your teaching facility.

No… No… No…

Why haven’t I said it – really said it – until this year? At first, because I trusted specialists more than my instincts. Then because… well, I still trusted specialists more than my instincts. I feared I’d cause my little girl more pain and suffering if I didn’t cross my t’s and dot my i’s. Or maybe I was just grieving and overwhelmed. Or afraid I’d “do it wrong.”

And now I’m done with that.

Saying no seems to be the biggest yes I can say for my daughter’s treatment, for her healing, for her future. It’s not comfortable to say it. It’s a little scary, actually, to look an MD/PhD in the face and say “No, I disagree.” But I’m doing it anyway. That one little word has brought more freedom to my family in a few months than years of yes ever did.

How are you doing with “no” these days? What hard words have you had to get comfy with as a special needs parent?

-Laurie

(Photo Source)

Email Author    |    Website About Laurie

I'm a wife and mom of four girls - two with bipolar, ADHD and developmental delays. It's a daily journey to live this life well and help my girls do the same. As a speaker and life coach, I'm committed to helping other parents thrive in this wild ride too!

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1 Janet December 13, 2011 at 10:24 am

Very thought provoking.

I appreciate the updates you provide on your daughter. You are (obviously) respecting her privacy, but your little glimmers show hope. She and your family are in my prayers.

2 Nikki December 13, 2011 at 11:34 am

Awesome post, Laurie!

3 Kathleen Basi December 13, 2011 at 11:55 am

It’s so hard, trying to weigh the balance of Their Expertise vs. My Instinct. You don’t want to be THAT MOM, but you kind of need to be THAT MOM. I just got out of the NICU with my son for something that seemed totally blown out of proportion to me, and now they’re presenting the possibility of other things I simply want to put my foot down on and say, “NO!” Your post couldn’t have come at a better time.

4 Laurie December 13, 2011 at 3:37 pm

Thanks, Kathleen. So sorry to hear about your NICU stay. May you have lots of discernment and confidence as you wade through those decisions!

5 Jocelyn December 13, 2011 at 1:41 pm

Laurie,
I can’t tell you how much I needed this article today; thank you so much for posting on FBook or I never would have found it.
This year, our Joshua had to be hospitalized due to severe imactation and GI issues. WE FINALLY SAID NO and then hospitalized him. No more clean-outs. No more Dr. visits that went nowhere.
Thank you for being a wonderful light to this world and to the special needs community!

6 Jo December 13, 2011 at 2:21 pm

Thanks for sharing. We had a bit of a bumpy start to my son’s beginning full time school. All because “professionals” thought they knew better. I had to say I didn’t want them involved and trust my instincts with him. They had never met him, asessed him and didn’t know about his condition.
Thanksfully school and his teacher were patient with me and we found a workable solution. The last part of this school term has been better for all of us.
So I applaud you for standing up for your daughter and your family. It is hard to go against the professionals advice. However sometimes Mom just knows what works..
Peace

7 Laurie December 13, 2011 at 3:41 pm

Thanks, Jo! Glad things are looking up for your son at school too. Here’s to hoping 2012 will be the best year yet for our kids and what they need!

8 Jo December 14, 2011 at 4:02 am

Laurie in that little sentence you say so much-here’s to our kids getting what they need!!!! sadly it is often such a battle. They are just kids for who for whatever reason need something extra and with the right help and support will develop in so many ways.
Thinking of you while you face this with your family. Be strong as you are giving that extra bit of help.
Peace

9 Nicco Cobb December 13, 2011 at 2:33 pm

Laurie…that still small voice is the one that’s always best to listen to. Your family is already thanking you for the courage, but they’ll thank you even more later as they come to understand the profound pain of having to say no and deal with missing your daughter everyday while she gets the help she needs. Please don’t second guess yourself. Evidence is clear your no was the best choice!

10 Laurie December 14, 2011 at 2:29 am

Nicco, your encouragement – as a friend and as a mental health professional – brings such healing. Such support. Thank you!

11 Chris Farron January 28, 2012 at 9:43 pm

Hey there Nicco.

12 Allison December 13, 2011 at 5:01 pm

So powerful. I’ve got a long way to go in learning to say no, but I have been learning this in little ways recently. Thank you for sharing this!

13 Lisa M December 14, 2011 at 9:36 am

Thank you for your inspiration and helping me to feel like I can say no! My son has Sjogren Larsson Syndrome which is very rare. I am tired of doctors saying let’s wait and see while he continues to regress. Reading your post was exactly what I needed as we head out this morning to an appointment with his neurologist. I don’t want to wait another 3 months while he continues to lose weight, lose skills, lose independence! Let’s do the tests now!! Thank you, thank you, thank you!!

14 Healthcare Help December 14, 2011 at 9:27 pm

Saying no doesn’t mean a negative message always that’s why I applauded you for making a stand for your daughter. Medical experts may know something we regular moms of the same child condition don’t know but in truth, they don’t even know entirely what is best for our children. I hope that I can have that kind of will too to try to say “NO”, can you give some piece of advice on how you surpass those hard times you encountered because honestly I needed that to hear too?

15 Debbye December 15, 2011 at 11:46 am

Great message! I have a long road of “no’s” ahead of us too, and thank you for the reminder that is is okay, and in many cases much better to just say no. :)

16 Laurie Wallin December 15, 2011 at 2:03 pm

You GO girl! :)

17 Gina January 5, 2012 at 12:50 am

Such empowerment in such a little word!

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