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I’m Calling a DO-OVER!

Last week’s editorial didn’t get posted because the week before didn’t either, so I posted it last week while working on my column.  That theory kind of works in my mind because then people can read it in the paper before they can read it online, so I thought I’d post last week’s article tonight and move ahead with writing this week’s submission.  If you’re head isn’t spinning from trying to follow my logic, read on for the befuddlement that was my night…

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Do you remember when we were kids and we were playing a board game with a spinner?  You so hoped for a 6, but the spinner landed on the line between the 6 and the 3?  Rather than chancing your opponent would call it a 3, you quickly grabbed the spinner calling “Do-Over!”  Or maybe it was shooting hoops out back with your brother when a cat decided to turn cheetah and you were in its path, so instead of nailing the banked granny shot, you got the E in HORSE?  Knowing you’d never win, you quickly call “DO-OVER!” rather than fall victim to the whims of the feline.  Perhaps I’m the only one with the such dumb-luck throughout my childhood.  I rarely won the do-over battles, but I always appreciated those few instances when Bud agreed and granted the second chance.

I realized this evening that I didn’t get last week’s column posted on my blog (www.thespectrumscene.wordpress.org) so I hopped over quick to upload it before working on this week’s entry.  When I pulled up the file I sent in for publication, I was confused as it was an earlier, unrefined version of what I thought I had submitted.  So, I’m ditching the 40s for a few moments and calling a “Do-Over” because aside from being thoroughly embarrassed by such a slight of hand when clicking through my documents, I think it’s important that you get the intended message.  So here you go:

ENCOURAGING A SPECIAL NEEDS MOM – TAKE 2

Being a spectrum mom is a blessed thing, it really is.  I get to see our world through such a different lens now than I ever did before we had Ben.  Yes, there are struggles and challenges most folks never imagine, but because we know the difficulties, we can also more easily see the beauty in the simple things and we celebrate what may seem like the simplest things to others because for Ben, simple just isn’t always simple.  It’s true life changes and our experiences tend to impact our relationships, but I think perhaps we notice that change more because there are times, it’s just terribly lonely being a special needs parent.  Not always, not by a long shot.  I have some of the best friends I could have ever imagined, even better really, but that doesn’t mean there aren’t some very lonely moments.  These “can’t make this stuff up” friends of mine I often call my sisters, they’ve ridden the waves with us.  They’ve seen the good, the bad, and the ugly, and they love us and our kids anyway.  Most of what they do is by instinct, but in some of the most difficult times, they’ve just asked, or get this, they’ve “just done”. 

Just done?  What does that even mean?  Instead of asking, “What can I do?” one friend of mine actually said, “I’m coming over on Tuesday afternoon at 2 so you can take a nap.  This wasn’t someone who’d ever been to my house up to that point and I wasn’t so sure how it all would go, but she recognized a need and cared enough to step in and say this is what I’m going to do for you.  This was years ago, so we didn’t have all the wild cards we do today, but we were in a rough spot with some big family challenges that were weighing heavy on my heart.  That gift of quiet time with the Lord and the blessed nap that followed was just what my heart needed. 

I remember another friend who brought me out of an extended down time when she realized I was not dealing well with life in the moment and knowing how I focus on details in such a time gave me forewarning that she was coming over and we were going to clean my house together.  This, you should know, is my least favorite domestic task, by far.  She lifted the weight of our home off my shoulders.  She didn’t do it for me, but with me, and in doing so lifted my spirits. 

There are a few autism moms whose blogs I follow simply because when I read what they write, I get it.  I truly do.  One in particular, it’s as if we are one in the same, except she is internationally known and respected, and her opinions sought after by thousands, while I am here, sharing my opinions with anyone who will merely glance over my words.  But hey, I get it.  I get what she writes and I know that if she were ever to read our Ben tales, she, too, would get it. 

When discussing autism, people often ask me what they can do to help.  Sometimes just “getting it” will solve nearly all the issues of the day, but I know that I cannot expect someone who doesn’t live the spectrum life to really understand it.  However, just being there, listening, loving me and my kids, accepting all of us for who we are, those are huge.  I think that might be the case for everyone, not just spectrum moms.  And maybe that’s the point, remember we are people.  Yes, we live incredibly different lives, but when it all boils down to it, we’re all just people doing the very best we can do. 

If you find it difficult to spend time with special needs families because you don’t know what to talk about or what to say, just think about things you want people to ask you about.  Perhaps one of these may be a good place to start.

  1.  How are you?  If you get, “Fine”, find another way to ask.  Maybe even just say, “No, really.  How are you really doing?”
  2. Ask about the kids.  Are they in school?  Do they enjoy it?  In what areas do they excel?  Everyone has something they are good at.  Identify and acknowledge it.  If you just can’t figure it out, ask your friend what her child enjoys.  Take the time to get to know them as well.
  3. Share that you care about them and their kids.  You can do this simply by how you interact with their kids.  Talk with them, too.  Even if they are nonverbal, they can hear you and most understand that you are talking to them.  Just because they don’t answer doesn’t mean they don’t have anything to say.  You might just have to find a different way to listen.  Perhaps it’s with eye contact, perhaps it’s activity or behavior.  Did you know behavior is a communication tool?  It certainly is!  When you can think about an incident in its entirety (what was going on before, during, and after the behavior in question), you can often understand why a child with autism has done or refuses to do something.
  4. Learn the language.  (I actually read this suggestion in another article by another blogger.  I wish for the life of me I could remember where or who at this point so I could give credit where credit is due, but I couldn’t agree more!!)  Your friend may speak in acronyms:  IEP, SLP, OT, PT, ST, ABA, ES, ITAP, etc.  If you don’t know what these mean, ask.  If you just can’t bring yourself to ask, look it up on google.  Just remember what you read will always be trumped by personal experience, which leads to number 5.
  5. Keep your advice to yourself.  Unless you are a professional, your unsolicited advice will likely do more harm to your relationship than any good that it could bring about.  I once read in an article something along the lines of “of course your aunt’s husband’s brother’s Pastor’s wife’s nephew has autism, but every child is different”.  Trust that your friend is the best parent and the best advocate for their child.  Ask, encourage, but please don’t advise unsolicited.
  6. Don’t downplay their child’s struggles, achievements or milestones by comparing them to those of your neuro-typical child.  Every child struggles in some way, shape or form, but until you have a child who works so very hard to say, “I love you” or to write his name, you really can’t understand why it is every little thing is celebrated. 
       As a special needs parent, you sometimes have to wait months, even years longer than you initially thought you would have to in order to hear those words or witness a signature.  Perhaps that day will never come.  Never is a terribly long wait.  But, then there are also these moments when the smallest things click and something makes sense for the first time.  These moments are to be celebrated. 
       On the other hand, difficulties come all too often.   Please don’t compare what seems to be a tantrum or a meltdown by saying, “Oh heck, my kids do that, too.”  While that may very well be true, and you may very well be tired from a long day, my guess is that it’s been quite a different kind of long day, often complete with therapies, doctor appointments, work, school, etc. etc. etc. and now this.  This may very well be the last straw.  Rather than downplaying your friend’s emotional meltdown as they cry over their child not wanting to be with other children (or anything really), understand that you only see the tip of the iceberg.
  7. Offer to help by watching her child.  Chances are, they will turn you down anyway just because it’s hard and not a lot of people can do hard, especially when it comes to autism, but there are times when just being asked makes all the difference in the world.
  8. Learn to laugh at even the tiniest thing.  Chances are, the time will come when your friend just really needs to be able to laugh.  Be her safe zone.
  9. Pray for your friend and her child.  People often say, “I don’t know what else I can do, I guess I’ll just pray.” or perhaps, “Nothing else we can do, might as well just pray.”  This misses the mark on so many levels for me.  Personally, knowing a friend is praying for us, our son, and his siblings trumps just about anything else you could possibly do, except maybe help me clean my house.  
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