Dog-gone days of summer

I will admit (only once) that I was one of those annoying people that complained about the looooong Canadian winter.  It is hot.  The a/c decided to up and break.  I’ve got three irritable kids who happen to have an irritable Mom.  It is hot.  We are hot.  Two are boooored.  One just happens to have autism and is constantly needing to be engaged and wanting a bath.  You heard right.  Repairman coming not soon enough!

I’ve been holding off writing because I have been waiting for something positive to say…and I had an epiphany.  Autism in this house isn’t always pretty, or nice…it can be plain old ugly sometimes.  Last week during a home therapy session, Timothy beat on me pretty good, left some bruises-more inside than out.  Today he hit and kicked another little boy who just happened to be sitting in the wrong place at the wrong time and also attacked his sister.  We all have scars from autism in this house, many of them emotional, a few physical.

Now if you are reading this and thinking I am looking for your pity you are very wrong.  I, we, are damned grateful for everything we have and although I don’t mention him often- the Daddy I picked for my children couldn’t be any better.  While the future remains unknown, I respect him as a father and every day that respect grows.  We struggle financially, emotionally and physically, trying to provide the best we can for all of our children, but still we are grateful.  What for, you ask.  We have choice.  We have therapy, we have resources, we have hope for better days ahead. Its because of that hope that we can go on…another day, another hour, sometimes only a few minutes.

I respect the hell out of any special needs parent.  Its not a highly sought after job with awards of merit and the like; often lonely and isolated but the perks of this position can bring you more satisfaction than any prize.  A few words or a small gesture often bring me to tears.   We fell down the autism rabbit hole and learn as we go.  Every day is trial and error.  We “specials” are a different race.  Not better, just different.

Yours, Trish.

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Mud baths for all

While others send their kids off to camp or play dates and parties we spend our days in therapy and the backyard.  Autism doesn’t know what summer vacation is unfortunately and doesn’t take weekends off.  Mr. Timothy continues to do “well” on his medication.  That means the slight improvements in his aggression and behaviour are steadily holding at slight.  His struggles in the car continue and unfortunately that sometimes means some whacks for me, his Dad or his sisters.  He does settle a little quicker.  We are searching for a five point car seat that can contain him a little better.

We frequently remind his sisters that although he hurts them, that does not mean he doesn’t love them.  Its a hard balance and tough for them to understand.  However their love is unconditional and they accept him as their brother regardless of his differences.

I loathe autism sometimes.  I hate how it has separated my son from us.  It is not a gift despite what I read sometimes.  It is harder than anything we have faced, relentless and hurtful.  It is a struggle.  It means diapers, still; at 6 years old.  It means no baseball with Daddy.  It means no birthday parties, play dates or summer camps.  It means my child is stuck in a body he sometimes cannot control; feelings he cannot express, words he cannot say.  It means that we, as parents, must give up our selfish thoughts of the son we thought we wanted.  It means unconditional love.

However, he continues to amaze and fascinate us on a daily basis with bursts of astuity and coherence.  I hope one day to know what he sees and feels.  How he is fascinated with water.  I wonder what he sees when he looks at it.  I wonder if he feels lonely?

Its a lifelong mission, you know.  To connect with him.  We won’t give up.  Not ever. 

To find joy in every day is our summer goal (or mine-although this blog is not mine, its his- I’m just the scribe).

Since we have Thursdays off from therapy/school, we have taken to the sprinkler for relief from the heat.  Timothy loves water and pushing his “coupe” into the sprinkler.  The kids have discovered a soft area in our backyard that quickly fills with mud.  They create potions and Timothy pours the mud down his chest, which he really seems to like!  Ewwwww!

Here are some pictures of successes below……….

Love Trish

 

What next?

School year complete- check.  Kids home every day-check.  Mom’s got a one way ticket on the crazy train- now boarding.

Timothy has therapy four days a week, Tuesdays at home so I have to make sure I clean at least once a week.  The animals have voiced their displeasure with the situation.  Pretty sure we all prefer school friends.  Last week was a doozy.  Timothy vs Doors.  We have been trying to limit his ummm “exposure” with doors @ the advice of the therapists and they have been successful.  Me not so much.  So off we go from therapy Wednesday with me putting hard limits on him.  He’s not pleased.  In the least.  So he takes off and runs between the cars in the lot….CLOSE to traffic.  Almost to the point of me yelling for help which I never do.  I always “handle it” no matter how bad.  After ten minutes of him dodging me and playing possum I caught him, wrestled him into the car.  For forty eight pounds he is strong.  I have a hard time with him now when he is like this.  If I’m not careful, he gets both hands in my hair and God help me he doesn’t let go.  Mercifully I got him in his seat, screaming bloody murder (him, not me) and he began to focus his blows on the doors and windows.  Again, at the advice of the therapists, I ignore, turn up the music and drive.  Because of the screams I keep the windows up and it is HOT.

I pull into the drive and brace myself for round two.  At this point, most of our neighbours either know about Timothy or are convinced I am a monster as many have witnessed us dragging the boy in the house.  This day, no exception.  It was another production, dragging him inside while he tried to strike out and kick up TWO flights of stairs (why did we buy a three storey home) and into the safety of his room to calm down.  For sanity’s sake we have a child proof handle on his door.  Times like these we need it.  After half an hour of screaming and pounding on his door he is finished.  I open the door and he comes down when he is ready.  Doors 1- Timothy 0.

The autism in him has quelled and again he is Timothy, a sweet and happy little boy.

We joined Autism Ontario @ Twin Valley Zoo on Saturday as well and eventually enjoyed a few hours there.  Timothy had a meltdown because of a) the line and b) the doors.  After half an hour of screams, hits and laying on the ground we were able to continue.  I was a little sad to see many parents gawking at him….weren’t these ASD parents as well?  Shameful.  I kept my temper in check and we enjoyed our time there, my word it was hot.

Medication is still going….we expect there will still be bad days but as long as the good are there too, all is well.

Summer has come in like a lion (or bear) and hopefully will go out like a lamb.

Thanks again Autism Ontario!

Love Trish.

#autismontario #asd #problembehaviour

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