"Hold on, man. We don’t go anywhere with “scary,” “spooky,” “haunted,” or “forbidden” in the title(-Shaggy)

Timbit has been a busy boy this week.  First up, trip to Brantwood farm Wednesday afternoon.  It started off, well ok.  His school was one of many coming and going.  It was a cold and overcast day so if you are like me and prone to migraines, you were feeling crummy too.  So I decided to hoist up my big girl panties and suck it up.  Timothy's bus arrived late to the farm.  He was excited and ready to rock'n'roll.  I won't lie, I was nervous.  Our family often avoids outings like this that are busy and in "open" areas (with no enclosures).  Its a safety thing.  His usual EA was there and we teamed up to keep him safe and from running away.  It was hard, no joke.  Timothy didn't  "get" the activities, transitions and wasn't sure what the expectations were here.  I could see he was frustrated and I was too.  About half the trip was spent with him on the ground screaming/crying or me blocking him from hitting me.  It was TOO much.  He did however enjoy the hay ride.

He saved the worst for last.  It was time to go.  The EA and I fought him into his carseat.  He screamed and hit at me-not understanding why he couldn't ride the bus with his friends.  I listened to his screams all the way home, ducking the boots and his clothing he threw at me.  I felt a little stunned.  For some reason I had expected him to go along with everything like the other kids.  I know he's not like the other kids.  Sometimes I need reminders.

I realized that for Timothy he had done pretty ok.  I was proud of that.  We drove to McDonalds for some French fries and I told him I loved him and that I was proud of him.  He seemed to understand.

Big event number two of this week.........ready?

IBI called and they are ready to pick him up within the next few weeks! 

What is Intensive Behavioural Intervention?

• Children with autism face a number of challenges–poor  social interaction skills, communication difficulties and developmental delays.
• Intensive Behavioural Intervention (IBI) can help some children with autism. It's a structured approach to breaking down the  barriers that isolate children with autism from the world around them.

THIS IS HUGE!  MONUMENTAL!

We have been on a 3+ year waiting list.  Kind of a big deal.  So Timothy will be doing 22 hours of IBI a week(instead of school) starting next month.  I am very hopeful this will help him.

Today our family attended the Brantford Autism Support Group Halloween party.  I haven't attended any meetings thus far but was welcomed with open arms to attend this party.  I volunteered myself and Skylar to help set up so we showed up about 45 mins early to hang decorations, etc.  I made sure to bring popcorn-just in case there wasn't anything there that Timothy would eat as he doesn't eat candy, chocolate, etc.  (so I make sure to eat his share every Halloween)

I was so proud of Skylar.  I was especially touched when she approached a boy about her age with autism to say hello.  This boy looked a lot like Timothy.  It was as if a wave of emotion washed over me and I had to excuse myself-ahem, hair in my eye....(eye roll).  Kind of like looking into the future.  Maybe that's why I felt so affected?

Here are some pictures of the party:

 

 

What came first-the chicken or the egg?

In Timothy’s case it was the chicken.  A few years ago, he ate everything.  I mean everything.  When the changes started happening to him,  it was back to square one.  Autism has taken so much from him.  From us.  I try to be upbeat and positive for the most part but I am still angry.  I hope that someday I can let go of all that.

So continuing on with his story, I left off finding our number one.  M, our daycare provider.  Challenging as it was to get Mr Tim on a new schedule, things began to look up.  I started taking classes at Laurier to build towards my degree.  It felt good to have this bit of freedom and to know that my son was in a safe place where he was being cared for.  I was also able to start working more now that we had reliable care.  Financially things got better slowly.  Timothy still had weekly appointments and therapy-sometimes 3x per week.  It was hectic to say the least.  Hope fuelled me to keep going.  T’s caseworker encouraged me to get connected with the Brantford Autism support group and get it going again.  But I wasn’t ready.  I would break down and cry just thinking about it.  I was still mourning. 

Some fabulous news came in January 2012!  I got a full time nursing job at my hospital.  We began to prepare to enter Timothy in JK.  Meetings meetings and more meetings.  He had to be “presented” to the school board.  Holy nerves.  He was set to enter school in September of 2012.  And he did.  It went off without a hitch!  (well a few small hiccups but nothing major)

Holy crapola!  I felt like I was on vacation having all three kids in school.  It was pure unadulterated bliss.  Of course the therapy appointments and groups and now school board nonsense still continued.  The best part?  He LOVED it.  Timothy loved school and loved the bus and every part of it.  I did worry about what to put in his lunches.  I mean, its not like he ate sandwiches and granola bars?  The first week, I sent popcorn, apple juice and a package of oatmeal.  However, I was informed that the school would not be using the microwave, etc for his lunches.  Now what?  It didn’t really matter because he wouldn’t eat at school for a long time.  I mean months.  He would fast from morning until after school and then dash into the kitchen and rummage through the cupboards like a hungry squirrel.

This food thing, it aint new!

I’ll drink to that.

Sometimes good things come in small packages.  Like TImothy.  But not this week.  This week I wanted to ball up the paper and toss that package waaaay out in the bush.  Its been a long one.  We are back to screaming on the bus unfortunately.  From the moment he steps on and all the way down the street.  The best part is when I can hear the screaming before I see the bus coming on the way home.  HA!  There were a few days we wrestled all the way off the bus and down on the ground.  A few neighbours got the entire circus start to finish.  Initially I was bothered.  I mean, who wants people to see them at their worst?  But this is our reality.  Some days are going to be like this.  On friday, things were back to normal (thankfully). 

Timothy is headed for a swallowing/feeding assessment next week.  I am still very concerned about his nutritional status.  Lately he eats popcorn, cereal bars and dry cereal.  That’s IT.  Little bit of a problem with that!  I would also like to start toilet training or seriously trying.  He will be 6 years old in April.

Next weekend we are headed to the Brantford Autism Support Group Hallowe’en party.  Skylar and I are helping out prior to.  Looking forward to seeing and maybe getting to know some new people with similar issues.  Hoping for some better days ahead.  Cheers to that.

Happy Turkey (or cinnamon toast crunch?) Day!

Starting to smell good in here...what is it about turkey?

Timothy came home with this yesterday:

Isn't it darn cute?  His little name on the bottom left corner made me swoon although I realize he must have had a wee bit of help to do that.  No matter.

It was a busy week for us.  Timothy started another group at Lansdowne that is now being cancelled due to lack of participation (from others) so that is a bit disappointing.  It was a "social" group with sounded really promising.  Wasn't meant to be I suppose.  The cherry on top was the wonderfully amazing phone call from C from respite telling me we were allotted another $800 worth of funding for Timothy to attend program!  Whee!

  I rode the Gravitron at the Simcoe Fair yesterday---lets just say this chick is not what she used to be.....felt a little (ok a lot) nauseous!  The girls and I walked through the barns and they milked a cow-via simulator.  What a hoot!

So much to be thankful for.  So often I look at what we don't have-but our lives have been blessed with so much richness.  No longer do I see my son as "flawed" or "challenged" because he has become such a gift to my life in so many ways.  My biggest teacher in life.  While we enjoy a turkey feast he will be enjoying his dry cinnamon toast crunch.  To probably one else reading this it sounds like a real junk of a meal but to me I am just glad Timothy is eating and sitting at the table, even for just a few seconds.  He has come a long way.

Two little girls who are smart and sassy (a little too much sass many days) to keep me in touch with my inner child(and diva!).  Very thankful for family and friends this Thanksgiving.  Without you, where would we be?

Autism is a four letter word....

Since when?

Dear Ignorant Lady in the grocery store:

I don't think you were trying to be as rude as you sounded when you leaned over your cart, put your hand half over your mouth and whispered to me, "Does your son have AUTISM?!  I heard that's popular these days".

Because I have no filter when I'm angry, I smiled and said "yes he does and thank you for asking".  I calmly pushed our cart the other way.  Inside I was seething.

I'm not sure what prompted you to ask me this, but now that I have collected my thoughts I have a proper response to you.

First off, autism doesn't make him deaf.  He can hear you.  Hell, he probably has better hearing than both of us put together. 

au·tism

noun /ˈôˌtizəm/  A mental condition, present from early childhood, characterized by great difficulty in communicating and forming relationships with other people and in using language and abstract concepts (from Wikipedia) Now that being said, I don't expect everyone to understand or even pretend to know what autism is, but what I do expect is a little tact.  Would I say, "Hey you look a little chubby, are you pregnant or just have a big lunch?" to a co-worker?  Wake up people.  We are living in 2013!  We don't call developmental disorders "trendy".  We don't use the word "retard" either.  I find both extremely offensive.  Hopefully next time before you open your mouth you think first because the next person may or may not tell you where to go. Have a nice day!

Rose coloured glasses are all I wear

Today was a great day.  I cried many a tear, but all were happy and joyous tears.

I cried when a friend told me how my blog had touched her, because that is really the reason why I'm doing all this.....one person who "gets" it makes it worth my time.

My appointment today at Timothy's school to discuss this years (IEP) learning plan was the second occasion.  They say its "informal" and yet I felt underdressed!  Sitting at a table with the principal, the head of special ed, Timothy's teacher and his EA; I am handed an eight page document and immediately feel overwhelmed.  His goals, their goals, my goals...it all begins to sound like blahblahblah until something incredible happened:  Timothy's teacher began to talk about how wonderful the other kids in the class are with him, how some are drawn to him and get excited when he learns something new.  Then S his EA chimed in and said its a class "project" to help Timothy.  I could feel the tears welling up in my eyes.  These were the most beautiful words I had heard.  My fears of bullies and rejection had been washed away like the rain and man, that sun was shining SO brightly. 

They talked on, mentioning he had taught himself to READ in class-reading short phrases and words in the classroom.  HOLY COW!  I felt like I was going to burst with pride.

We walked to his classroom where I was to "observe" for a few minutes but he saw me and ran over.  I scooped him up and tried not to cry.  There was never a moment where I was more proud of this boy called Timothy.