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Wednesday, March 7, 2012

GBE 2: Confrontation

I really hope some new parent to special needs trips across this blog entry.

And, if that parent were to read nothing else of my entire blog but this particular topic, I could close up shop, never write another day and say, yes, that was a worthwhile venture!

Today as I type this entry, I picture myself nearly ten years ago, sleepless and strung out on special needs, searching the Internet in the midnight hour for answers to what could be wrong with my children. Desperate to take control of my family and our future, I poured every ounce of energy I had into calming the crisis. In different ways, I am still doing this all these years later. The quest is never-ending.

I'd love to tell newbie parents reading this blog--and my former self--that we are all rock stars. Any person who really understands this life, who really sees that sometimes it can be a struggle to do something as simple as brush your child's teeth, would never breathe a whisper of negativity into your ear.

Unfortunately, it rarely works this way.

Confrontation.

Boy, I wish I knew then-- back in those early days, when life was nothing but sleepless chaos and crying and missed developmental milestones and a feeling that every ounce of physical and mental energy in your body simply would not take away what is wrong with your child--that it is more than okay to confront others about the realities of this life.

Special needs parents, I know you know what I mean. Some people are just doubters.

It seems as though our society is uncomfortable when things operate outside of what is mainstream. What isn't mainstream is different. What is different is somehow wrong, and what is wrong can be fixed by mainstream practices. That's what some people seem to think, anyway.

You could be a better parent if...

Your child would be not be having trouble if...

Your marriage would be better if...

The situation would be different if...


In those early days, when we were having physical and developmental problems with our first child and the walls were closing in on both of us, my husband and I sure didn't appreciate hearing all the comments about what terrible jobs we were doing as a mother/father/wife/husband/housekeeper/homeowner/etc., from by-standers--people who, by the way, generally slept all night, were showered on a regular basis and knew very little of special needs. Yet, I figured that confrontation wouldn't get us anywhere positive. Why create waves?

A decade into parenting a myriad of special needs, I don't think I've done any good with my polite silence. In fact, I think I've done more harm than good. I contend that, when done in a constructive manner, there are Three Reasons To Confront Your Doubters:

1. Over time, the negative feelings created by silence can spoil like bad wine.

If any of the doubters happen to be people that will be in your life for any amount of time, you owe it to your future relationship and to your childrens' relationship with those people to lay the cards out on the table. Miscommunication breeds ugliness, spreads at an alarming rate and is likey to permeate every interaction you have with them moving forward.

2. Inaction contributes to ignorance.


I know! I know! Who has the time, ability and energy to take up a cause?!

I don't own a soapbox on which to stand. I don't wave any banners. It just isn't my thing. What I am is a mom who's children must live in this world like anyone else's. If I do nothing to plant the seeds, I don't see where I have much room to complain about future intolerance.

3. Validation feels really, really good.

Darn it, I know how hard this is! It is very frustrating for someone with little understanding and a comfortable armchair to take a glimpse into this life and make a judgment.

Taking the time to explain the child/the situation at hand/special needs in general shifts the focus from whatever negative judment is being made and onto a more positive path. I can't stress how liberating that feels. :)



Over the years, all those times that people looked at the crisis going on in our home or the special way in which our special family approached life and then made comments to me about how I could somehow be "better" made me feel pretty awful. How I'd love to take that feeling away from other parents walking behind me in my shoes.

I can't.

But, I guess I can offer what did not work well for us in our life. For us, silence has not been golden.

18 comments:

  1. Amy, I have joked that now that I'm 50 (ok, past 50) I have the right to say whatever I think needs to be said. But with all the maturing pressures you and your husband have endured it seems that you young'uns long ago reached that "speak your mind with authority" stage! You are right: nothing but true good can come from your leveling with those who will never 'get it' without your insights shared.

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    1. Mike!! I miss you! And, thank you. I think I've earned some stripes as well.

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  2. You are exactly right Amy. Silence only leads to more misunderstand. One cannot expect anyone not living your life to understand your life. I am no different. If I want you to support me, stand with me, comfort me then I need to educate you as to why I need it and what you can do to constructively help me.
    Special needs families and friends of theirs, need to speak up. Need to inform the "normal's" (whatever a normal child is) of the limitations, the out of the ordinary needs or whatever else begs support and cheering!

    I cheer you and your families efforts daily. I am so proud of what you do and who you are and the devotion you and your hubs have given to your charges to give them the best possible experiences and the least possible challenges.
    ♥ you today and everyday and this post is long overdue.
    Hoping a lot of struggling parents read this one.

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    1. I learned this the hard way. I've probably ruined connections because of it. Thinking our struggles were obvious, I stayed silent out of respect to the other person. It really was the wrong approach.

      Thanks for supporting us always, Jo.

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  3. I don't have special needs children..I really can't imagine. because I'm ashamed to say that I have little patience with my own boys, with the normalcy of normal tantrums etc. Too often I catch myself trying to reason with them as if they are little adults. It goes over their heads, but perhaps it calms me down. You're a strong lady and you have a right to set it all straight, here, for the world, and for all those people who may have stepped into your home and felt they had the right to judge. They don't.

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    1. Sandra, I think that strength is an aquired characteristic! My children have beat mine into me, and, when I have failed to find it, I have ducked into this Mom Cave and have wanted to pluck out my hair one by one. It's a process.

      BTW, I'm pretty sure I drive them crazy as well.

      Thanks for reading!

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  4. I personally think all you can do is lay it on the line and tell it like it is. If you don't there is no way anyone else can even fathom what you go through day in and day out. Not that it is your job to educate the ignorant, which I am sure you discover in massive doses, but I think in your situation if the person is any part of your life or your kids lives at all you need to tell it like it is. You know, it is said G0d will never give a person more than he or she can handle. He must think you can handle a lot. By the things I discover here that you write about...you handle it and handle it well. You are a survivor and a great mom. Not many could do what you do and walk away with their sanity in tact. In your shoes, I wouldn't put up with much from others. I would be in confront mode. Of course, I have little tolerance for ignorance. If you don't know, then find out before you make some stupid comment. That is my motto. Bless your little family. You set the bar pretty high for the rest of us who struggle to handle kids without special needs. You truly are an inspiration!!

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    1. You are awfully generous to me, Kathy! Thank you. Really, I do reach my fill, and who wouldn't? But, for the most part, this IS my reality. I don't know any other way.

      I honestly thought NOT saying anything in response to the comments made to me was a deferential act on my part. Bad move. Bad move all the way around. If I could change one thing, I would have spoken up more.

      Live and learn.

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  5. Amy, parenting in the best possible circumstances is a roller coaster. There isn't a one size fits all rule book and if there was it wouldn't work. Every household is different. As parents we try something new everyday, and what worked yesterday, doesn't mean it's going to work today. You've doing what works for you and yours. Write the rule book fresh as needed and hold the line as needed. Don't forget to breathe.

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    1. Of course! Now, if only those commenting understood this...

      Thanks for reading. I enjoyed dropping by your blog earlier!! And, I'll have you know that I am wearing cotton candy pink!!!

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  6. Amy, You bring back so many memories of when my own son was growing up. I think you reach a point where, like keeping anything else "inside", it just ends up being exhausting. It's almost easier to blaze a trail and show people what they need to know about "living the life" if you are emotionally up for the challenge. Sounds like you are. I'm sure this post will find it's way to helping a lot of parents.

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    1. Denine, what wonderful insight you have added to this discussion! YES, keeping it inside simply creates more work. My heart really feels for new parents to this life. Finding your place is not easy. Thank you so much for reading and commenting!

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  7. Great info, Amy. You really do put your soul out for all to feel. I like that.

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    1. Thank you for always reading.

      I wish you could have seen how many revisions I made on this. I think I put a WHOLE LOT of my soul out there regarding this topic but then pulled back. It's probably one of the most significant missteps I've taken along this road.

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  8. I figured out how to post here! I totally understand where you are coming from. I have 3 kids, with my younger boys, now 17 & 15 both being in the autism spectrum. The older boy is severely autistic and non-verbal, and became so, ahem, difficult, that he has been in a residential school for the last 4 1/2 years. I honestly don't think anyone would have believed most of my posts if I had blogged while they were growing up - if I had had the time. If you ever want to chat with someone who's been there, done that, please contact me!

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    1. I'm so glad you took the time to try! Thanks for commenting! I have an idea of your life and would love to be in contact with you. I hope you'll feel free to comment here again so that others can learn what you have to offer also.

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  9. Isn't there always some jackass who (from the outside) is pretty sure that he/she could line list all the stuff you're doing wrong? There's a parenting, nutrition, marriage, financial, personality, career, religion, and any other topic that I can think of self-proclaimed-expert on every corner, it seems.

    Life is a giant, messy learning experience and the best any of us can do is to lead with our hearts. You do that beautifully.

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    1. Beth, you always get to the center of what I have written! Yes!!! I did not expect to encounter people like this. Dealing with special needs was hard enough. I would see that for another parent. I would have never presumed to be able to handle their situation better. It caused such stress in those early years to deal with the barrage of criticism, and I usually just absorbed it.

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