Patience for the holidays~

I wanted to get a quick entry done before Christmas and its taken me days to get sat down in front of the computer.  Work, IBI and school in general winding down has taken its toll on our lives and sleeping has become a novelty around here.

Amidst the chaos there is beauty if I take time to breathe it in.  Timothy has been doing well at IBI with less aggression but now is tired and frustrated at school.  His bouts of aggression at home have increased due to him (and us!) being tired of  always on the go go go.  In fact I am currently nursing a sore nose as I type but that is besides the point.  I tell myself he doesn’t mean it, and its because of his frustration, not really directed at us but yet, it leaves me with a dull ache inside my chest.  These kids (all of them) need me and if I can be strong so can they.

Christmas here means a pretty tree and neat decorations that light up and play music.  Its another day to Timothy-one’s meaning that I hope he can absorb eventually.  He’s not interested in the gifts or tearing off the paper or really even the surprise inside.  I hope by sharing this post, I can inspire people to remember to be kind this holiday season.  Not everyone you see “gets” Christmas or can build snowmen or enjoy a parade.  Its damn hard for some.  It brings tears and frustration.  Sadness to families that are celebrating in the only way they can.  That child you see melting down at Walmart or the grocery store may not necessarily be acting out, but responding to stress in the only way they know how to.  I will get off my soapbox now.  Holidays are what you make them. 

Mine is about gratitude.  Alot of it.  I know things could be worse as someone callously said to me once…but there is a ring of truth to it.  We are blessed with three beautiful children and all of them teach me things every. single. day.  No regrets here, not one.

Merry Christmas to each and every one of you reading this!  Thank you so much for your support this year it means the world to me.

 

Trish. xoxo

“Isn’t there anyone who knows what Christmas is about?”

We watched Charlie Brown the other night.  Takes me back to my childhood and I’m happy to continue the tradition with my own children.

“Skyboobs some milk!”  Timothy’s pet name for Skylar hahaha, makes me laugh every time I hear it.  Its kind of a Christmas miracle to hear him request anything…its kind of a BIG deal.  Any time I look back to how far he(we) have come I am amazed.

I just completed and dropped off the Incontinence Grant forms to our pediatrician as Timothy is getting into a new age category:6-19 yrs.  His grant amount will go up (hopefully) next year, although I’m not quite sure even what diapers you go to after you outsize Huggies/Pampers pull ups?  Guess soon we will find out.  The young lad is up to about forty pounds these days and TALL.  What he eats right now is popcorn and a lot of it.  We go through a big box of orville at least per week.  Has to be in the microwave “bowl” packaging, not a plastic bowl, heaven forbid.

IBI has begun and our lives have become even crazier.  Timothy goes to school Tuesdays and Thursdays and to IBI Monday, Wednesday and Fridays 9-1230 which has become a bit of a   scheduling nightmare.  Thankfully we have a wonderful daycare provider who helps out a lot with pick ups. 

He started out with a bit of a set back.  The staff found him quite aggressive and to my dismay things were scaled back from 9-3 to 9-1230.  I was scared.  IBI was “it”.  If he can’t do it then now what?  Thankfully they are tolerant at therapy and reassured us that he wouldn’t be “kicked out” things would just be slowed down.  Timothy is tired but getting used to this new schedule.  It is WORK.  So that’s what we call it.  When he’s finished “work” we go to McDonalds for french fries.  Its become a routine.  His therapists are surprised and excited to tell us that Timothy has many skills!

I feel peace this December.  I feel happiness.  My life isn’t what I pictured it to be, its even better.

So what?

Timothy has spent his weekend on the computer.  I turn it off and try to distract him and just when I think I’m successful I hear windows8 chime in the background.  Its all he wants to do.  You Tube videos.  Sometimes Starfall (its a school program online).  So yeah, I let him.  He flaps.  ALOT.  I don’t even notice it anymore.  You know that old kitchen scale?  Its been leaning on the awesome side way heavier than the crummy one.

IBI starts tomorrow.  I”m cautiously optimistic.  Throw in a little scared as hell too.  What does this mean?  I’m not sure yet.  I guess “they” (the treatment team) will decide how good of a candidate Timothy is within the first six months.  Then comes the scary part.  IF they deem him inappropriate.  Then what?  Is he beyond help?  Can’t be fixed?  Nah.  He is what he is what he is…….and so on.  Whatever he is, I will love him.  If I change his diapers for the next twenty years(hope not!) I will love him. 

“What kind of life will he have?” I was asked once by someone.  At the time, I had no answers.  I excused myself to the bathroom and sat alone in anguish.  Now is a slightly different story.  I still have no answers, except the difference is that I have hope.  Hope gives me fuel to keep going day after day.  Tiny success takes us a step forward and the same day we can go back five.

I want everyone reading to know that I am not writing these journals for your sympathy.  That’s not it at all.  I’m documenting our story.  I want people on the verge of giving up to sit down and read and know that there is more.  That hey, someone else is going through the exact same crap I am.  That throughout the darkness of diagnosis there can be joy.  You just have to find it.  I promise you, its there.

Change is in the air

I haven’t decided if I like it yet.  But its coming, it is.  I apologize for my extremely tardy post.  I’ve been sick and just couldn’t get much done.  Two weeks have passed and lots happening here.  I left off at Hallowe’en and we had just heard about IBI starting.  Between that Timothy had been picked up by the Feeding Team.  Appointments and more appointments and paperwork and phone calls and more appointments.  Starting to catch my drift here?    There was also a safety plan introduced at school.  With the new demands placed on Timothy he has been getting aggressive.  While I definitely don’t want anyone to get hurt, this part is hard.  Where does it go from here?  Signing the papers allowing the staff to use non violent techniques at times of aggression was difficult.  On the outside I was smiling but on the inside I was screaming and hurt.  This was my baby.  I didn’t want anyone putting their hands on him.

The feeding appointment did not go well.  Basically  the end of it, I was asked to repeat a food journal-something we have done before.  That was annoying but ok.  The worst part was taking Timothy to school afterwards.  He is rigid.  Doesn’t understand changes in schedule or change period.  He fought me all the way to the car-spilled my coffee all over the road and scratched up my wrists enough to break the skin.  When I finally got him into his classroom he was grabbing at my leg not wanting me to leave.  His teacher and supports at school they are really great.  I got up to leave, fed up to here and almost bumped into the principal right behind me.  He wanted to know if I heard anything from the IBI people.  I answered him quickly and escaped to my car where I burst into tears.  Enough.

So……….this is about where I got sick.  A raging cold has been passed around at work and I couldn’t avoid it any longer I guess.  I was down and out but still had to cook and take care of these kids (because thats what a Mom does).  We had planned to visit my parents up north and that’s what we did!  Sick or not, we went and had a good visit and lots of good food.

Back to work Monday/Tuesday and Wednesday I had to meet the principal to sign the IPRC (Timothy’s yearly learning plan) that identifies him as “exceptional”.  I met them at 9am and we began with a prayer about Timothy.  I almost cried, it was beautiful.  Since I had been sick, I had all of my errands and laundry and cleaning (blah) to catch up on when I came home.  I cancelled today’s feeding appointment.  The aggravation out weighs the reward for me.   Next up tomorrow- signing the IBI paperwork!

 

"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.

 

Back to the grind

Here I am, in a hotel room in Amherst, NY; wide awake.  Its Sunday and I CAN'T SLEEP!  I'm here for date weekend with my girls doing some shopping and to see a show.  Its nice to be away, but I almost wish we had just stayed home so I could be sleeping in my own bed!  I miss Timothy too.  As much as he exhausts me most of the time I miss him.  Friday morning before he left for school he kept leaning into me- this is how he "asks" for hugs and cuddles.  Its the closest he gets to telling us he loves us.  I treasure it.

The past few weeks Timothy has done well.  We are so proud of him!  His bus transitions have been good, albeit a few tantrums on the sidewalk.  The new bus driver seems lovely (meaning she is tolerant) and school reports things are going pretty well there too.  They did call to say that he has scratched people at school-which is a new behaviour for him.  After a few days of me bugging the husband to cut his nails because I can't do it alone, Timothy is now trimmed up.  I've made calls to our contacts at Lansdowne to follow up and see what they suggest when this happens again.  For us, this means more training.  Sometimes I feel like a hamster on a wheel......

Some good news is that after me bugging (I have to bug a lot of people a lot of the time for various reasons) the Respite department at Lansdowne for more hours- we have been allotted 6.75 hours per month for the past 18 months- we were granted an emergency $200 in funding.  Respite is basically programs, recreation and well, paid babysitting for our family to have some time off from Timothy.  Because he is such high needs 24/7 they have programs such as this for families to access (after the obligatory waitlist of course).  Timothy spent two weeks at Every Kid Counts Camp this summer which although fabulous, used up his year's worth of respite hours in two weeks leaving us nothing for the rest of the fiscal year.  So I've been on the phone 1-2x per week harassing the poor woman who runs the program for more hours.  What happens is that now our "case" goes before a board of directors who then decide how crazy I must be before I am granted more emergency funding.

Really hope we get it.  A recreational day program for Timothy is about $160.  A two hour swim $50.  You see where I'm going with this....

The girls have been doing well too, they are happy to be back at school and less pleased with our hectic routine.  I'm hoping to squeeze in some swimming or indoor soccer for them in October.  Unfortunately due to our shift scheduling they end up missing classes at some point but it is what it is (that or nothing) and we do what we can do.

Some Happy Fall pics for your viewing pleasure!  Enjoy, T.

 

 

How will I know?

I wonder this a lot.  How will I know if I’m doing enough?  How will I know if its the right thing?  I know all neuro-typical Moms have the same feeling but in this case its different because I”m speaking for my son.  I am his voice, his opinion, his fears and his choices until the day (hopefully) he can speak for himself.   Lots of pressure right!  Just keep on ‘keepin-on’……..

These days, Timothy is all about cats.  We recently adopted one from the SPCA-kept the name they gave her- “Tinker”.  She is his new favorite thing.

 

Onward we go..or back I should say to Spring of 2011.  Young Tim was 3ish.  I was still trying to juggle working weekends at my job-they didn’t always call;(  It was about this time we took our first family vacation to Florida.  Income tax returns helped us to afford this on a shoe-string budget and boy was it nice!  A welcome break from the flood of appointments that had become our new ‘jobs’.  Of course we couldn’t do the full Disney experience~ A) we couldn’t afford it and B)at this point Timothy was unpredictable and we had no idea how to manage him efficiently.

We ended up with me taking the older two girls to Magic Kingdom one day and the whole family to Gatorland another day.  The house we rented had an awesome pool that we spent tons of time in!

This year brought a lot of changes.  I had to bite the bullet and try to find childcare for Timothy so I could work during the week.  We couldn’t make it on our current income even with me staying home during the week and taking in other children.  The search was on!  Our caseworker recommended several facilities in the area but many of them couldn’t accomodate a shift workers schedule.  I was having a hard time with his diagnosis, how would I ever find someone to take him?  To me, it was a hard sell.  I felt like giving up.  Then one day while looking through Kijiji ads, I found Michelle.  She lived just down our street which would be uber convenient.  We set up a time to meet and off I went.  My nervousness must have been palpable.  I began my sales pitch ready to hear rejection…………..but it never came!

“Sure, I will give him a try” she said.  WHAT!  I think I cried with relief all the way home.   I mean, NOW I know that the good outweighs the bad with Timothy(most of the time) but at the time things were tough for us.  We had little supports with exception of my mother in law so really there was never a break.

M turned out to be a godsend.  Nothing is perfect, but the arrangement we have is pretty close.  We need her at 6 am or 6 pm she is there.  She is understanding and best of all ACCEPTING.  Timothy is treated as everyone else ( maybe even a favorite)  My son had found his first friend!

You win some, you lose some

Tough lesson to learn, but has become a staple in our lives. I spoke too soon, my friends……..Timothy is still a bus screamer! The second day of school he started in again. Mind you, its not an every day occurance so I will still chalk it up as success.

Doesn’t he look innocent?! HA!

So lets start with the good news shall we?

Friday night I dropped Skylar off at a birthday party. I had promised the younger two a “pizza party” which consists of blankets and pillows and eating in the living room (gasp). This is a real treat for them and they LOVE it. So all the way to Skylar’s friends’ place I reminded Timothy how we are going to get pizza (imagine lame sing song voice here). We arrived at said pizza joint, parked car and got out. Timothy being extra good, following my direction,etc etc. A delivery man comes out, points at my car and asks me to please move it so he can get his car out of the back. My heart sank. I just knew this would not be pretty. Timothy was galloping towards the store entrance with love in his eyes for that pizza (which is currently his favorite food). I looked back at the pizza man and I kid you not, I must have had pleading desperation in my eyes. He smiles, and says again, “please move your vehicle”.

Inside I was crying. I called for Timothy and Casey to come back explaining we needed to move our car first. I will preface this by saying that Timothy has a very one track mind-not unlike many children with ASD. Changing direction before the reward is obtained is usually quite impossible. It involves alot of screaming and most always me dragging him to the car and wrestling him back into his car seat.

This time was different. I was able to direct him back to the car with the promise of sitting in the passenger seat while I moved the car. Good Lord it worked! Crisis averted and I felt like superwoman!!! Pizza enjoyed by all yum yum.

The bad news.....
My step sister Melissa visited the kids and I Saturday (the very next day) and since the weather was so beautiful we decided to hit the park. I have for a while been unable to take the kids to the park alone. Timothy is a runner. A fast one at that and its unsafe for me to take him out alone without another adult.

Yes he did take off but at least I had Missy to stay with the others so I could chase Timothy (while almost losing my pants-FUN). This is why I have a gym membership! All was good and I could almost say *successful?* until it was time to leave. I gave out the initial warning to Timothy who usually needs a countdown when we are about to stop doing something he likes. He screams and carries on playing on the playground equipment. <---- This is normal. Then without warning, he took off towards the road. Since I expect this from him unfortunately, I was able to grab him quickly. He started swinging his fists at me and scratched up my face pretty good before I was able to hold his arms down. “Timothy, no hitting. Timothy its time to go now”. It didn’t stop. He continued to claw at my face and fight me with everything he had. This hurt. Not physically, but it stung me deep inside my chest. I dragged him to the car and felt tears well up under my sunglasses. Will it be like this forever?

My other two children gathered up our belongings and with Missy came out to the car. Unfortunately this had become our “normal” and they seemed unaffected. We started driving and thankfully Timothy recovered from his tantrum quickly but I had not. Hot salty tears threatened to spill over and down my cheeks but I was not about to let my kids see me so upset. I swallowed them down and looked at them in my rear view mirror. They were excited at the promise of Swiss Chalet for dinner. Timothy smiled at me. I couldn’t help but smile back at him. I wanted to stay angry with him cause damn, I was angry, but when he smiles his whole face lights up, truly.

We drove on and I kept smiling. It wasn’t forced anymore. It was Saturday. I wasn’t working and the sun was shining. I had gas in my car, clothes on my back and a place to live.

Why the heck not?

If you’ve met one, you’ve met them all..

Kids on the spectrum that is. “Oh yeah, I met a kid with autism once. He grew out of it.”(so you know alll about autism right. Please school me) Or how about, “its trendy” or “He just needs more discipline”. “He just lets his sisters talk for him, its third child syndrome”. If I nod my head politely, will you stop talking now? “Oh, but he looks like a regular kid!” (autistic children are all hideously ugly deformed creatures, didn’t you know)

My Timothy is a 5 year old boy. He plays like a little boy, and looks like a little boy. (cuter than most, but hey, its Mom talking here). While I’m writing this, I picture Pinocchio-“hey I’m a real boy!” hahaha.

So here’s the difference. My son has an entirely different view of the world. He feels and sees differently. Does he know love? You betcha. His smile can light up a room and make even the most hardened heart warm. He seems to struggle with the in-between feelings mostly….anger, sadness, hurt, frustration.

Is he challenging? You bet. But is he worth every single second of this life and a blessing in disguise……without hesitation yes. I think life would be pretty boring without him.

Success!

First day of school CHECK, No screaming tantrums CHECK=Big fat success.  Safety vest fits (still on the smallest zipper) and new (hopefully more forgiving) bus driver.  Last years’s not so much.

Small things like these make me happy.

Moving right along…….

Back about two years, where Timothy was 3 yrs old.  Birthday   celebrated by family-balloons and presents he wasn’t interested in, a cake he wouldn’t touch.  We sang “Happy birthday” as he screamed and covered his ears and ran away.  I tried to hide my sorrow, but boy did this sting.  Would he ever enjoy a birthday?  Or have a party like other kids?  I was determined to make it happen.  The screaming fits continued and now we “enjoyed” hitting and kicking alongside them.  We were advised to ignore these tantrums (which was totally against our parenting style) from the behaviour therapist.  Kinda hard to when your child is screaming in your face lol, never mind in the grocery store cart.

A new tool was introduced to us, a PECS book.  (Read picture exchange)  Timothy had no language skills at the time.  Simple pictures of food and toys were fashioned into a small book which he was to choose and put in our hands.  Sounds easy, right?  Timothy is stubborn.  Like nobody’s business stubborn.  We would insist on the PECS book, he would refuse and lie screaming on the floor.   At the time, his intake consisted of warm milk, donuts, waffles and pancakes.  Sometimes a few french fries or a weiner. He would go days with only eating a few crackers or a donut simply because he did not want to use the new system.   We had to back off because of his slight frame and concerns of his fragile nutritional status.  Lord, how we tried.  I bought pediasure, carnation breakfast drinks, Timothy would not drink them.  I worried many days and many nights for months on end.  Was I doing the right thing?  I worried he would end up in the hospital on a tube feed.  His sensory issues were starving him.  Yet, he grew.  On the lower end of the weight percentile but still considered healthy!

Hard to explain to our other two children at the time who were 9 and 5 respectively, why Timothy didn’t have to eat what they ate.  They knew loosely what autism was but far too immature to encompass the whole lot of it. He ate what he ate when he wanted to eat it.  We later incorporated more formal meal times.

This was the spring that Skylar got to attend the “every kid counts” Sib Club.  Its a one day camp for siblings of special needs children.  Basically run by social workers, its a day all about them.  To talk about how they feel about things, and really life in general for them at the time.  Skylar really enjoyed it.  

Often the focus is on Timothy so I began to incorporate date weekend.  Once a month Skylar and Casey and I did something alone.  Whether it was a movie day or shopping, I made a point to spend time alone with them.  Jake and I worked it into the budget.  We had to.  Its become a tradition that has continued on to this day and the girls really look forward to it.  Of the two weekends off shift I have per month, one is theirs and of an activity they choose.  Sometimes its just the library and a hot chocolate, but it makes them feel as much a priority as their brother.

Falling into old (and new) routines…..

Time is getting away from me lately.  Timothy was fitted for his bus vest today as he is harnessed into his seat (picture a straight jacket without the arms and four hooks!)  lol, just kidding-but really that's what it reminds me of.....  the last three months of school he had some major behaviour problems on the bus.  He would scream bloody murder and thrash about sometimes hitting his head off the windows-I swear this kid has a HIGH pain tolerance.  In essence, he drove his parents, sisters and especially the bus driver completely bananas when we had to go anywhere.  The behaviour therapist thought it was for a reaction, but really?  Aren't there better ways? 

We actually drove to Florida and back with him doing this, talk about bananas!

I took our two girls for haircuts today-not sure if I've mentioned I have other children?  Skylar is now 11 and boy-band crazy (UGH) and Casey 7.

(Picture added of their “do’s”.)

They are pretty excited for grade six and grade two at Ecole Dufferin this year.  I’m not too sure about Timothy, but I’m pretty excited for him to go to school as well.  We have had several “close” calls this summer with him being such a high elopement risk.  Jake has installed chain-locks on the door that drive me crazy but help to keep Timothy in the house and safe.  The screaming has died down fortunately, and is fading away like the summer sun.  Timothy will get his haircut here at home a la Daddy’s clippers.  Every time it gets better.  We started off with the two of us wrestling him in the bathroom, screaming (mostly from Timothy) and now have progressed to a one man job with Timothy in a chair.

I hope to one day be able to take him to a “real” barber shop when he can tolerate it.  His sensory issues make it extremely difficult right now.

Another success to report:  I got a toothbrush in!  Sounds funny, or maybe gross to some, but we haven’t been able to brush the boy’s teeth, like EVER.  He is five years old.  Yep, I know.  We have tried everything.  Washcloths, letting him play with the brush, fancy toothbrushes, ones that vibrate, etc etc.  We did a painstaking study with an occupational therapist for weeks……you could not get a toothbrush near that boy.  The therapist once related it to nails on a chalkboard for him. BUT!  I have been able to “brush” (touch his teeth) with the toothbrush twice in the last week.  Amazing.

Add it to the list of things I’m becoming grateful for these days.  Tiny, little things many take for granted.  Timothy has become my greatest teacher in life.  He teaches me to appreciate every precious moment.  When life sucks, when it doesn’t.  I appreciate whens its just being “ok”. 

In response to “One Pissed Off Mother”

I have really tried to ignore your ridiculous letter. I have. But I have a few questions. If you are reading this, without knowing me or my little blog, could you please look at the pictures in this post. Tell me which of those beautiful children are autistic? (“retarded” according to you). Can you choose one?

I bet you would be surprised to know that it is my son who has autism or what you called “mentally handicapped”. His name is Timothy. He is a sweet little boy who has no idea he is any different than anyone else. He does not know what hatred is and I pray he will never meet someone like you in his lifetime. He would never understand why someone having never met him would already dislike him so much. Like Max, the harmless boy you referred to in your letter, Timothy does make a lot of different noises,etc when he plays. Most of the time when he is happy. You see, autism makes his brain function differently than yours. He is no less of a person. He still loves, thinks and feels. He just expresses it in different ways. I wonder if you would think he was a “wild animal”? 1 in 88 people are afflicted with autism. I bet there are at least a few with autism spectrum disorders in your family tree at those numbers? If you don’t already, I bet you will soon. Autism is affecting us all like it or not.

I pray that you see the error of your words and the community’s response to your letter. YOU are the minority here.

Picking up the pieces… (and trying to keep them all together)

This morning, I woke up late (0830), and went to open Timothy’s door (he has child locks on the inside for safety). He had been busy. His whole room strewn about and the best part: his Thomas the train bed had been dismantled and when I opened the door he was in the process of removing the support beams underneath his mattress! I had to laugh. The boy is smart, I give him that. Now, can he put it back together?!

Back to the story. Where had I left off? Oh yes, the waiting game. I call it that because of the ridiculous “system” that health care has. 1 in 88 children are on the autism spectrum now and Ontario has no means to support them. Its a national crisis really. I digress…..

So Jake and I, who really knew nothing about autism until this diagnosis was thrust upon us, were left to wait and really navigate it on our own. Begrudgingly, I turned on the computer and started researching autism. Funny enough, I was still in denial and didn’t search long. Did looking for help mean it was real?

Thankfully, we did have one resource: a behaviour therapist we were able to utilize in the interim. She was great, she really was. Best of all, she liked my kid. That meant so much at the time. I was unsure how to deal with his behaviours because I didn’t know how to treat him. Were they “autism” related or plain old bad behaviours? I didn’t want to punish something he couldn’t help. I’m not sugar coating here, we were ignorant. We knew nothing about autism or how to deal with it. Autism was like Rain man, wasn’t it? LOL.

So with the ace of the BT in our pocket, things slightly improved. We learned we should treat Timothy the same as our other kids. Make life as normal as possible for him. Easier said than done.

As I mentioned before, it was HARD to take him anywhere. A grocery store strip took planning. I had a backpack of things to prepare for “just in case”. Books, small toys, snacks, drinks, diapers-you name it. By this time, Timothy was 3 years old. We learned later that he may be reacting to sensory overload.

Just for a second picture this. Imagine you are hyper sensitive to SIGHT-SOUND-SMELL. Grocery stores have those uber bright yellow lights. Lots of people. And the noise…cash registers ringing and banging, people talking, walking. Carts screeching and making odd sounds. Weird smells, good smells, bad smells. Starting to catch on?

Many a trip ended so abruptly with him screaming, tearing at his clothes and hitting me that we left everything at the store and had to leave. Lots of times both of us crying. It took about twenty minutes for him to calm down. Often he had to scream it out. When I couldn’t bear to listen anymore he would be segregated to his bedroom. Boy did I feel bad when I became to understand him more but it seemed to help. Cuddles when he calmed down enough to be touched. So I stopped taking him to public places. I didn’t know how to cope with him and the embarassment (at the time). Boy,people are judgemental! One older lady suggested I spank him, others just glared and shook their heads at us.

I won’t lie, I used to be one of those people. When a kid was being obnoxious in public, I would automatically blame the parents. But you really have no idea what is going on with those families. Can they help it? Or are they just trying to do the best they possibly can, like me?

First Steps: Landsdowne

As we were newly relocated to Brantford, the specialist referred us to Landsdown Childrens Centre.  It was here that the medical director himself (Dr Mc) conducted a two hour assessment on Timothy...yes another.  I will preface this by saying that this assessment was in January 2010-about 5-6 months after the initial diagnosis.  During this waiting time we had blood drawn from Timothy (pretty UNfun) and sent away to a special lab in Kingston where he would be tested for specific chromosomes and Fragile X.  They all came back negative.

The good Dr came to the same conclusion.  Yes, your son is on the spectrum.  Although, quirky, DrM impressed me.  He was on all fours trying to play with Timothy much of the time.

So now what?  Another referral.  This time for an occupational therapist, behaviour therapy and a caseworker.  Our caseworker, (AM) was lovely and seemed genuinely interested in helping us and providing us with any and all resources available.  Because of our vast (cough cough NOT) income, unfortunately many grants and tax breaks were not available to us.  Actually, if you are a family of five that brings in over $35 K a year you are deemed not in need.  Hmmm (insert eye roll).

Behaviour therapy was a six month wait.  Occupational therapy 6-9 months. 

I actually dropped down my work schedule to only part time weekends during this time in order to be more available for Timothy and "his" schedule.  Financially, things were not good.  The bills began to pile up and so did the stress.  But we did what I think most people would do and put our children first.    I began to take in a couple children during the week to help offset the shortage in income.

Speaking of the other children, they began to act out in different ways both at school and at home.  Casey began getting calls home from school for different behaviour issues.  My husband and I were being pulled in every which way possible with no time left for ourselves. 

Timothy began the first of many behavioural problems.

The dreaded smearing. Yes, its what you think!  When put in his room to sleep, whether it be for nap or bedtime, he would remove his clothes and his diapers and POOP!  He would fingerpaint his room.  You name it we tried it.  Even down to duct tape.  He was Hoodini I swear.  I removed the paint from the walls in his room from scrubbing them so hard.  Our new carpets stained. 

Second issue:  screaming and tantrums.  Whether it was frustration from lack of being able to communicate his needs, the terrible twos or sensory issues, Timothy screamed.  He screamed from dawn until dusk.  During this time Timothy "napped" every day for two hours.  He rarely slept, but I needed the break for my sanity to be honest.  I've never felt so stressed as I was during this time.  I loved him but damn, I did not like him like this.

Issue three:  Flight risk!  Timothy didn't and still does not have any concern for safety.  If there is an open door, he's gone.  Basically you need an eye on him at all times cause boy, he's fast!  Example:  My parents were visiting from Cobalt, and someone accidentally didn't latch the door closed all the way.  It wasn't noticed for several minutes and yep, you guessed it!  He was gone!  911 call, me hysterical, my son walking the streets in a diaper and barefoot= the whole kit and caboodle.  The issue at hand at the time was that Timothy did not even answer to his name at that time.  Very dangerous.  Luckily, he headed straight to the park two streets over where my husband found him.  We were all quite shaken. (Now there are child proof handles on our doors with chain locks).

So back to what I was saying, where are we left in the midst of all of this waiting?

So what to do in the meantime?

 

As of today I"m ousting myself!

So here I am.  I'm laying it out there for all to see.  Its not a pretty story, full of mistakes and learning but its mine.  I hope that someone out there can relate.

I'm a pretty regular person I think.  My name is Tricia. Born in Woodstock Ontario, to Wolfgang(yep you read it right) and Cynthia in 1981.   Parents eventually divorced and we moved to London.  Then again in London.  Then to Kirkland Lake.  And finally to Cobalt where my Mum remarried to my stepfather Richard.  Four elementary schools in four years.  Not a great time but we survived and in the end I guess it made my backbone stronger.   Near the end of high school,  I ended up living with my Father in Kitchener and his common law partner in 1999 which is where I met Jake, my husband.  We actually met in a chatroom on the internet.  HAHA!  Had my first babe at 21, Skylar in 2002.  We lived in his mother's basement in a one bedroom apartment.  Cheap and it did the trick (thanks Deb if you're reading this).  Eventually I got tired of working at Tim Hortons for crummy pay and applied to nursing school.  It was hope on a limb, as I was still four credits shy of graduating high school.  But!  Mohawk college accepted me to their Practical Nursing due to my exemplary (ahem) grades in physics.  So off we moved to Hamilton and 18 long months later I was a Registered Practical Nurse.  Shortly thereafter, I began to work at the St Josephs Centre for Mountain Health which is a psychiatric facility.  I work in Schizophrenia services.  Mostly I enjoy my job but I longed for something more, more opportunities. In 2006 came Casey Nicole, another little girl.  Jake and I married in September of that year.  In 2008 Timothy was born, weighing 9 lbs, 15 oz.  Finally Jake had his boy!

Everything about Timothy was beautiful and he had a wonderful demeanor.  He breastfed as long as I could keep him full and ate well.  Timothy didn't crawl, he walked.  He met the typical milestones until approximately 9 months.

Things began to change shortly after his first birthday.  It was as if he hit a wall.  Timothy withdrew socially.  From everyone and everything.  He preferred to play alone and showed no interest in his sisters or anyone else for that matter.  Where had my bright and happy boy gone?  Timothy stopped eating pretty much everything and hated to wear clothing, including diapers.  He would pull and rip at his clothes.....it made no difference what he wore, he wanted it off.  He would make odd gestures at objects.

Fast forward to that fateful Dr's appointment.  Me, blubbering like an infant.  Mercifully that ended the appointment and I was handed my(his) fate on a small appointment card.  We were being referred to a pediatrician.  In my heart of hearts, I still held hope that things would be alright and that I would wake up from this terrible nightmare.

No such luck.  Six long months later and we were sitting in another Dr's office.  Ninety minutes later in his office and he said the words that I will never forget and even tear up typing.  Your son is autistic.

Once again, the floodgates opened and I wept in that office.  I wept for my child, I wept for my family and I wept for what I thought was lost.   For you see, life wasn't over for him.  Timothy was not dying, but at that very moment I was grieving.  I grieved for almost a year.  I couldn't talk about his diagnosis without crying and just thinking about what could have been sent me off the ledge.  My husband seemed unaffected on the outside and often told me "he'll be fine" or "he will grow out of it".  I began talking to God.  I was angry.  What did I do to deserve this?  People would say to me, "God wouldn't have given you a special needs child if he thought you couldn't handle it."  Really?  Cause I don't seem to be "handling" anything very well.

I'm going to end this entry with my thoughts on Timothy's diagnosis.  He is NOT autistic.  He is more than just autism.  Timothy HAS autism.  That is not all he is.  He is so much more!