Ten things being a special needs parent has taught me~

10.  Keeping my judgey panties in check.  I can’t tell you how many times Timothy and I have been victims of this and until it happened to us I had no idea how it felt.  It SUCKS people.  Please don’t stare at my child when he is lying on the floor in Walmart or flapping at the lunchmeat in the deli case at Zehrs.

9.  Keep your parenting advice to yourself.  For reals!  9 times out of 10 that Mom and/or Dad are doing the best damn job they can.  They have taken hundreds of hours of “Parent Learning” courses and spend every spare minute working with that kid.  The wringer?  Been through it.  Likely they have heard what you have to say already several times.  Its offensive so please don’t.  (I say this with love).

8. Live for the moment.  Those dishes?  They’re not going anywhere.  Neither is the laundry.  As long as you have clean unders for the day you’re good.  Clean house will have to wait cause my kid won’t.  Let it go.

7. The meaning of ABA, IEP, IBI, TAC, OT, PT and the principal’s phone number off by heart.  (Insert eye roll here please)

6.  The short bus is awesome!  It comes right to our drive way = less work for me.  Roll on short bus, roll on.  You rule.

5.  Milestones are overrated and not made for every kid.  Hell, Timothy still wears diapers and he is 6.5 years old.  He just started to feed himself this year with a spoon.  We had a party!  Make up your own rules and don’t conform to society’s.  You’ll be so glad you did.

4.  Learning to appreciate the little things.  Peeing on the toilet warrants a trip to McDonalds for fries around these parts.  When my son said “I love you” for the first time at 5 years old I wept with joy and gratitude.

3.  How awesome respite care is.  We are lucky enough to score 6.75 hours of one on one for Timothy a month.  Yes, I love him but   having a shower alone is a gift from above!

2.  Stop taking myself so seriously.  I live in sweats.  I rarely have   time to put on make up, so brushed teeth and clean hair is what it is.  If there’s time to sleep and clean the house its a special day.  I’ve lost friends along the way but made way more.

1.  Don’t be scared of different.  Get to know different.  You may be surprised at how incredibly awesome different is.  I know I was.

Cheers.

Trish.

tHe BoOk Of TiMoThY

tHe BoOk Of TiMoThY oN fAcEbOoK

A letter to my son with autism

Hey Timothy, its Mom here.

Its September 13, 2014 and as I type you bounce beside me; your eyes filled with a joy only you can understand.  You are six years old.  You like pizza, jelly donuts (only the red jam) and Batman.

 

You seem happy today.  This makes my heart full and warm.  When you smile you make everyone around you smile!  The days when you are so full of angst and distress are so much more painful and hard to watch.   I know you don’t mean to hurt me when you strike out in anger.  What makes you feel that way? I have always wanted to know so I could make it stop.  Its my job as your Mommy to protect you and keep you from hurting.  But you can’t tell me.  No one can.  We can only guess through pictures and trial and error.  Some days, magic happens and you shout out new words.  Often you’re not quite sure what they mean or they are said in the wrong context, but you are trying hard! 

I know that life isn’t easy for you.  Many of your peers seem miles ahead of you.  While you are toilet training and learning to dress and feed yourself; they are playing competitive sports and video games.

While you are learning to tolerate having others in your personal space they are wrestling with each other, but not with girls~eeeeeew!  Most six year old boys think girls have cooties (little invisible bugs)  while you are learning to discern between girls and boys.

You tried a new food this year which puts us into the double digits of foods you will eat.  Rice crispie squares!  Aren’t they good?!  I hope you will continue your brave quest through the food jungle, just like Batman would.  He is one of your favorite super heros right now.

Mostly I just want you to know you belong to a family who love you very much.  I bet all of the therapies you have to go through are tough and you don’t like me very much for making you do them.  Timothy, we are doing this because we hope they will help you to communicate with us better.  Think of Batman. Autism has sort of put an invisible force field around you and you are trapped inside.  You need to keep being strong like Batman and try to figure a way out of this force field. 

You may not be able to.  That is ok.  We will figure it out together.

Love always and no matter what,

Mom.

tHe BoOk Of TiMoThY

1 in 68

Another summer has passed.

And so has my one year “Blog-o-ver-sary”.  Sharing Timothy’s journey for the past 13 months has been hard-happy-sad-tearful-angry-joyful-grateful and damn eye opening.  No longer am I in mourning of the child I thought I should have.  No more “ripped off” feelings…….shameful, I know, but I felt it and even now I will own those feelings with no regret in my heart. Years ago, when I had no idea what autism was; when he would melt down in public my face would burn with all of the eyes on him.  I could hear others thinking and even those that chose to voice their disapproval aloud.  “He needs a spanking”  or “terrible parent”.  It was my fear to be “that parent”.    I had no freaking clue what was happening inside him, what he saw, what he felt.  Extreme sensory overload.  Fear.  Anxiety.  Autism.  This was my third child, wasn’t I supposed to be some sort of expert by now?  Not even close.  Autism had claimed my child, my beautiful tow headed boy and had him in a death grip.  It has been our mission to loosen that grip ever since and every day we come a little closer to understanding what is happening in his world.  He is 1 in 68 according to the current stats.

Wait a minute.  My kid’s not just a number. His name is Timothy. He is six years old and going into grade one tomorrow. Here he is so you can say hello!

Our home may have train tracks throughout the kitchen.  It may have crayon scribbles in the hallways and random cards and pictures taped to mirrors and doors.  Our cupboards are stocked with microwave popcorn and apple juice boxes because that is what Timothy eats.  (really).  He may be 1 in 68 to everyone else but he is 1 in 1,000,000 to us.

Our lives are wacky, messy, and downright hard-imeancan’ttakeanotherday hard.  But I wouldn’t trade it for anything.

This is autism in our house.

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