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.