Tag Archives: sensory issues

It’s a Mad Mad Mad Mad world!

I must be bipolar.  It’s amazing (and scary) how you can fluctuate from such elation to such despair all in one afternoon.

But first, the elation. 

My amazing daughter has gone and won herself the 5th grade spelling bee at her school!! 

I know, isn’t it great?? <insert proud mother grin with tears in eyes here>

This, the child who was so nervous this morning she could not stomach a single bite of the scrumptious toaster strudel I so lovingly prepared for her.  She was having some major performance anxiety.  I informed her that all the same people who loved her before the spelling bee would still love her AFTER the spelling bee, even if she went out in the first round.  I know she is a great speller, she knows it and she doesn’t need a spelling bee to confirm it.  However, I’d like to say that it did.  I was a nervous wreck…I think I stopped breathing a couple of times.  She did get lucky on some words though…giggle, slippery, early, ancient and velvet.  Oh, sweet velvet, the winning word.  On to the district bee…more to come on that, I’m sure! 

So after the excitement of the spelling bee, (which was awesome because we had to call Daddy and the grandmas, of course!) it was time to pick up Jacob from school.  And here lies the despair.  He had a hard day and so got into the car with his normal “my day was horrible” speech.  He has even developed something called “The Horribleness Scale”…1 is unattainably perfect, 10 is worst day ever in the history of mankind.  If he says he’s had a 5, that’s a great day in Jacob lingo.  Today was a 7 (which is about average, I’d say) and it quickly went from bad to worse with the realization of mountains of homework and that his sister had horseback riding lessons (which he hates to go to) on top of that.  Suffice it to say, the meltdown wasn’t pretty.  And so it continued on a downward spiral of how much he hates himself and how stupid he is.  With me trying to console my son, all the while, silently cursing the public school system for sending my son’s self-esteem into the proverbial toilet.  Then it’s off to horseback riding lessons and while Emma is off riding Cody, the cute brown horsey, Jacob and I attempt to sit on the swing, watch the sheep as the sun is setting and have a calm chat…which quickly degraded into another meltdown when he heard some man in the distance yukking it up.  Laughter is evil in Jacob’s eyes, er, EARS, I should say.  He is even trying to stop himself from laughing now, because it is his opinion that he should not laugh if he hates it when others do it.  Convoluted thinking, I know.  Heartbreaking, really.  So, Jacob contorts and screams all the way to the car and I collapse in tears by the side of The Edge.  I  collect myself.  Fortunately, now it is dark and Jacob can’t see that I am upset and he’s had a moment to cool down too.  Next up, study vocabulary…which he hates with a purple passion.

I’d say we’ve come full circle–from one speller to the other.  

I know it’s life and nobody ever said life was fair and life has its ups and downs and every other cliche you can think of.  But sometimes I just want Jacob to have a day like Emma had today, where he feels proud.  Where he wins something.  Where he feels smart…because he is, he just doesn’t believe it.  But 8 hour school days full of frustration and 2 plus hours of homework nights doesn’t really go a long way toward getting that.  It leaves no room for anything in our lives other than schoolwork.  Two words: survival mode.  I feel like all I do is crack that whip…we’ve got to get this done.  Hurry up we’ve still got math to do.  Oh, heck, let me just do that part for you.

It’s a miserable existence.

It just seems wrong.  So, so wrong.

And so we are at a crossroads.  An educational crossroads.

I have one child who is a round peg.  A beautiful, creative, smart, wonderful, round peg.  She is the child for whom public school was created.  She is thriving there.  I have one child, as beautiful, creative, smart and wonderful as the other one, who is a square peg and who people are constantly trying to cram into that round hole day after day after day.  It gets painful after a while.  He is miserable, beyond miserable.  And I want to cry every day when I leave him at that school and I want to cry when I pick him up.  There has to be another way–A better way, for my son.  We are looking for alternatives.  We are praying and we’ll see what happens.    

If I’ve said it once, I’ve said it a million times, “I’ll never homeschool.  It’s not for me.”  I’ve been thinking about it for some time now and I’m on a fact finding mission.  I’ve talked with people.  We are exploring possibilities.  I am seriously considering it.  It’s crazy, I know.  I think that whoever said, if you want to make God laugh, then tell Him your plans, was on to something.  

You know what else they say…

Never say never. 

Cause that kind of stuff always comes back around and bites you in the butt. 

Yes, yes it does.  I have the bite marks to prove it.

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Filed under Autism Days, Kids

The Fixer

 

 

I’ve tried.  I really have.

But I just can’t seem to get inside his head. 

I have tried to imagine the physical pain that certain sounds bring to his sensitive ears.  I have tried to understand how he processes things.  But I just can’t.  It isn’t for lack of desire or lack of trying.

I believe it.  I know it’s true.  I know he suffers as a result, but I can’t feel it.  I can’t feel it and therefore, cannot understand how to fix it. 

Herein lies my problem:

Inside of me there is this NEED.  This undeniable need–to FIX things.  Now I don’t mean fix things as in “fix the busted microwave”.  I mean, fix the boo-boos in my children’s lives–be they emotional or physical.  I have decided this is an inherited trait.  And I’d like to blame it on my daddy.  He’s an innate “fixer” as well.  He doesn’t deny this.  And now, I guess, neither do I.  I guess by fixing things it makes me feel like I am doing a good job and being a good mom.  And being a good mom means I love my kids.  It validates who I am–the thing I love most about my life–being a mother. 

Here’s how this is a problem: 

Inevitably, there are things–boo-boos, if you will–that are not fixable and maybe they don’t need fixing.  I have said on many occasions that I do not in any way believe that my son is “broken”.  He doesn’t need “fixing”.  I believe that God created him as the masterpiece that he is.  I think I want to fix things so that he can walk through his life and feel proud of who he is, just as he is.  Fix it so there is such a huge influx of kids who want to be his friend that we can’t possibly accommodate all the friendship that is offered.  Fix it so that his life is not so hard for him to navigate. Fix it so that I can alleviate the constant frustration he feels with everyday tasks that seem mundane to many of us. Fix it so that he sees his amazing gifts, abilities and potential.

So, I, in my own power, can’t fix it.  I CAN’T FIX IT.  What does that mean about me?  I find that my inability to fix these things causes me to doubt my abilities as a mother.  Then I start to get sucked into the “vortex of negativity.”  It begins to stir up lies in my mind like, “I’m not good enough, because if I were, I’d be able to make this boo-boo okay.”  Cause that’s my job as a mom, isn’t it? 

Or is it?

Here’s the kicker:

By telling myself that I’m not good enough, am I not doing the same thing to myself that I want my son to STOP doing to himself?  Devaluing myself.  Beating myself up.  Telling myself that I am less than who I really am. 

Maybe I should go think about how I can fix that.  Maybe not. 

I think a big part of being a mom is knowing when to fix stuff and when to let it ride.  It is a very fine line and often so hard to identify one situation from the other.  I ask the Lord every day to give me the wisdom I need to know the difference. 

This mothering business isn’t for the faint of heart.  But then again, neither is just being a human being walking around in this crazy crazy world!

 

 

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Filed under Autism Days

Boy of Summer

Jacob loves summer.  He loves all that it means, but most of all, he loves the ocean–swimming, boogie boarding, digging and building in the sand.  I absolutely love watching him at the beach–relaxed, at peace with himself, no pressure.  The sheer joy on his face is priceless.  It is the one place in this world where he is the most happy.

 

But, it’s that time again. 

If you have a school-aged special needs child, maybe you know what time I mean.  The dreaded “back-to-school”. 

As we hurtle uncontrollably toward that day…August 21st…I can feel the anxiety creeping in.  I try to hide it and push it away, but it keeps slowly rising in my gut.  Like vomit burning the back of my throat.  Jacob feels it too.  In trying to prepare him for “that time”, we’ve started talking about it.  I’ve emailed school personnel.  We’ve purchased his school supplies already.  (Probably will get Emma’s today…tax fee weekend and all.) 

He says, “It’s going to be the worst year ever.”  I say, “You’ll be top dog!  Eighth grader.  Ruling middle school!”  He says, “It’s going to be awful.”  I say, “Give it a chance, buddy.  You never know.”

Yes, it’s the unknown.  But, for him, it’s also the known.

It’s knowing that he’s going into this year with no friends.  Knowing the self-imposed pressure of doing things perfectly is back with a vengeance.  Oh, it’s always there, but worse during the school year.  It’s knowing that high school is one year away.  It’s knowing that unexpected and painful assault on his auditory system is lurking around every corner.  It’s knowing that, as a 13 yr old boy, his body is changing and feeling out of control, which only seems to magnify some of his Asperger’s behaviors/sensitivities.  It’s knowing you’re different and wishing you weren’t.

It breaks my heart.  For many reasons.  But mostly because I can’t fix it–neither his self-perceptions nor some of the realities.   Oh, we try to prepare him.  We try to encourage him and get him all pumped up.  Ever the optimist, I say, “This is your year, buddy! Go show them all how amazing you are.”

I know how awesome he is.  I see him as the fearfully and wonderfully made child of God who has amazing gifts and talents to offer and who has a purpose in this world.  His teachers and most adults who know him, know how awesome he is.  But his peers, well, that’s a different story.

Learning to accept who you are–warts and all–in spite of whether you are accepted by others.  Seeing yourself as you were created and intended to be.  It all comes down to that, doesn’t it?  It’s not something I can make happen for him.  That’s why they call it self-acceptance, I suppose.  And I realize that getting to that place is a journey for all of us.  Some get there faster and more easily than others. 

I’ve heard so many people share about how their children have accepted their differences;  they are proud of their autism.  Proud that it makes them unique, special, not one of the cookie-cutter “normal” kids.  They’ve come to view it as an asset in their lives.  Truth be told, I always feel a pang of jealousy when I hear that.  Oh, how I hope and pray for that day.  When he realizes this gift he’s been given.  When he sees that it’s good NOT to be like some of the jerky, jocky, I’ve-got-to-look-tough teenage boys out there who are trying so desperately to find themselves by making others feel badly about themselves.  Asperger’s makes some things harder, sure, but perhaps life would be harder in some other way if he weren’t on the autism spectrum.   Everybody’s got something, I always say.

I try not to think too much about the future.  Of course, it gets to me sometimes.  I can’t worry about things that haven’t happened yet.  I can try to guide him down the path of learning to appreciate who he is and steer him toward a future of doing something he loves.  I can get him counseling, therapies and services.  I can encourage him, love him, pray for him and trust God to both take care of him and cover the mistakes I’ve made. 

And I watch him grow.  Which gives me more joy than you can ever know.

That will have to be enough.

——–

“For you created my inmost being;
you knit me together in my mother’s womb.

I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.

My frame was not hidden from you
when I was made in the secret place.
When I was woven together in the depths of the earth,

Your eyes saw my unformed body.
All the days ordained for me
were written in your book
before one of them came to be.” ~Psalm 139:13-16 NIV

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Filed under Autism Days, Jacob