We will walk for Quinn.

Our Walk for Autism is in one week.  We are doing great on donations, our costumes are almost ready (thanks to Jesse!), and we are excited!

School started this week and I have had a lot of anxiety over Quinn starting at a new school and starting over with friendships.  But he seems to be doing well, so I am beginning to feel relieved.  I just hope the first 2 days reflect on what the rest of the year will be like.  I am not holding my breath on that one.

Some really great stuff has happened for Quinn.  We got in touch with FSCD (Family Services and Child Development) and they approved our application.  As we sat with our social worker and she was telling us what will happen now, I cried.   She advised us that we were eligible for Respite Care. I didn't even know what that was but I was happy!  She explained that when we have someone watch Quinn we can pay them an hourly wage, that person just has to be over 18 and not an immediate family member.  If that someone takes him to the zoo or anywhere Quinn can engage in social situations with other children, then that is considered Community Aide and we can pay that person $18.00 hour.  We send in the bill to FSCD and they deposit it into our account!  Then if Andrew, Hilary and I want a break from Quinn we can have a weekend away and FSCD will pay for someone to watch Quinn for the 48 hours, or they will pay an approved Nanny service.

That alone was HUGE.  We were floored. We explained how we didn't get into any day camps that would work for Quinn, and she said that they would cover that too should we find a camp for Autistic kids.

Then she went on to say that we should apply with LDAA (Learning Disability Association of Alberta) to get Quinn enrolled in social training classes and also for their day camps.  Which, we did. He starts Social classes on September 24. These classes cost $525, they will direct bill FSCD.  WOW right?!  They have summer camps but they were full for this year, but next year for sure. They even have residential camps where he will go overnight for a whole week at a time.

We were referred to PACE Kids where they will direct bill FSCD for Occupation Therapy and Speech Therapy.  We are currently on their wait list and hope to hear from them soon.

Lastly, we were referred to a therapy group called Triple P.  They will come in our home and help our family deal with Quinn's Aspergers, plus provide us with support for discipline/challenges with Quinn.

Our social worker was amazing and understanding.  She advised us that 120 kids out of her 140 kid workload are receiving the Federal Disability Tax Credit and that we should be too. I told her how our last doctor wouldn't sign off on it.  She told us that was BS and to shop around if need be to have a DR fill it out.  We have given it to our DR to fill out and he said he would, so we are just waiting for him to do so.

When she left, I cried. I was floored that so much help was available and it took us 3 years to get it.  A friend at work, Leah, was the one who told me about FSCD and pushed me to call them. I didn't, for weeks. When she was on her last day of work before Maternity Leave she asked me to call so she could move on, as she asked me everyday if I had called them.  So, with her pushing me, I did. Best thing ever.  I owe her so much!

We met with our social worker on July 15th. I won't forget that day!

I am happy to do our walk for Autism Awareness and for Quinn.  We have had tremendous support from friends.  Today I was on the walknowforautism.ca website and saw a video that someone posted from the walk last year and I totally cried. Sometimes I get overwhelmed with Quinn's Aspergers.  Sometimes its no big deal, he's just Quinn.  I belong to a Facebook group for parents of children with Aspergers and it makes me feel better.  That its not just my Aspie who won't ride a bike, take a shower, tells bad jokes, has anxiety, thinks they are smarter than a snake, will only eat 4 food items, and only talks about Pokemon. I feel better about my Aspie.  I forget that he has Aspergers and when people ask me "is it hard?", I say "No" or "I don't know, its all we've known".  He is just Quinn to me.

The saying goes, "if you've met one person with Aspergers, then, you have only met one person with Aspergers"

On September 11th, our family, The Aspie Avengers, will walk for Quinn.

Blogging from a bucket

Hey all.  Not feeling so good right now. I have been isolated from people for 2 days because I caught some sort of stomach bug, so blogging is my way of having a conversation without really any effort.

I can't believe how long its been since I blogged. Over a month. Wow.  I wish I had some fantastic update for you, but I really don't.

Well, I guess I did take a trip. I did a surprise visit to PEI on May 14th.  I had such an awesome time. No stress, no muss.  Just complete chill time with my mom and my sister. Just the way I like it. I went alone with no kids either.  The weather sucked, it rained the whole time I was there.  Oh well, lots of reasons to stay indoors and hang with my family!  I enjoyed my time with my sister a lot.  She has changed a lot, and is finally turning into the woman we always hoped she would be.

I am leaving again on Monday night for Montreal.  My friend Michele is graduating from McGill.  I was honored to be invited. It will be my first time really being in Montreal. I have traveled thru it a few times on the way to PEI from Ontario as a kid. I know I will be getting Andrew a smoked beef brisket from Schwartz deli for sure. I want to have a poutine while I am there!  I am excited about a restaurant we will be going to with some of Michele's friends, I have perused that menu twice now and have picked out what I want. I can't wait!  I haven't seen Michele for a year, so being able to hug her this year means a lot to me.

I had more to type but I got distracted by my dogs grumbling tummy.  It is making some weird gurgling noises.

Andrew's cousin Sara used to tease me about my Twilight Obsession, then I told her she had to watch the movies or read the books to really be able to tease me.  So last weekend, we watched Twilight.  She liked it. Wanted to watch the next one right away. I told her no, I had to work. I went to the bathroom to wash up and get ready for bed.  Meanwhile, Sara and Hilary put on New Moon.  Then the other day, she came over and watched Eclipse.  She was sad to hear how far out Breaking Dawn is!  She now wants the books. I converted another to the Twilight Obsession.  She is Team Jacob tho. I forgive her.

Anyways, June 4th is when we start our 5k training! Can't wait. I saw my chiropractor today and we talked about my hip issues from that fall I had at work last month, he provided me with some great stretching exercises.  We did those today, and if it weren't for the pukey feeling I had, I could've gone for a walk right then and there. I walked out feeling great...from the hips down.  We have had some great support from our family and friends for our Walk Now for Autism.  We have raised over $1000.00 already and I haven't even really started my campaign.  I of course want to thank everyone who has donated so far. Means so much to me! (I will not cry...)

I am excited to start the training and am considering the couch to 5k training.  But I am also looking for a bootcamp here in Calgary that will be good for a very out of shape me.  If you know of any affordable and will work for my fitness level bootcamps, leave a msg below.

Things are going well for me. I am happy, getting healthier, and I have travel on the horizon.  If I could just kick this yucky barfy thing I have right now, I would be even happier!

I am FRUSTRATED with Autism!!

I just sent this email off to Society for Treatment of Autism:

Hi There,

My son was diagnosed with Aspergers and ADHD when he was 8.  He is now 11 and we are no further ahead than we were 3 yrs ago.  We were told his diagnosis and left to fend for ourselves. As I follow link, after link, after link, I am getting frustrated and overwhelmed.

Why can’t it be simple?  Why can’t it be like this:  1. Diagnoses 2. Here is where you get funding 3. Now get the help you need ie: social classes, OT, Speech

So far I have been stuck on 2 so we haven’t advanced to 3.  A friend pointed us to FSCD and we just got the forms in the mail so I am filling those out.  My son goes to JR High next year and I am terrified.  Can you help me?

Sincerely,

Jody McKay

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Everything that I know what I am suppose to do comes from word of mouth from other parents.  It shouldn't be this difficult. I start out typing Aspergers, Calgary into a search engine.  A few links come up and they all talk about Aspergers and what the challenges are but none of them actually help.  

I don't know how to get funding to pay for what my son needs. I can't believe all money for Autism/Aspergers is split up between 20 friggin organizations, and I have to figure out how to get money to pay for Occupational  Therapy, Social classes and Speech.  

This needs to be mainstreamed, and Psychologists and the Government need to speak to each other.  The Gov needs to create a hand out for Dr.s so that way they can truly help us.  Once we were told our son has Aspergers and ADHD, we should've been handed a folder with  steps inside.

1. Call this number or visit this website and start receiving funding.

or to make it simple, OT, Social Classes and Speech should be free - call this number to get appts. Then I don't need to go thru the bullshit of finding funding.

2. Since free won't happen, list where I can get help.  

When you spend 2 hrs going from website to website and clicking link after link, hoping for the "magical" link (click here to get funding), it gets way overwhelming and you begin to feel like a failure. DUMB.  

Then you sit down at lunch with some co-workers and you find out there kid is half the age of your kid and doesn't even have a diagnoses per se, but they have funding and their kids are getting all stuff your kid needs.  You feel like a frigging moron and a failure.  Then anger sets in.  How is that someone figured this stuff out and I haven't? No diagnoses, and they get everything.  My kid is older and has nothing. WHY?

I met with a friend yesterday whose son is 13 yrs old and they have been pay out of their pocket all the expenses.  I asked why they didn't have funding, and then it was like me talking. "I have looked and I can't figure it out.  I don't know where to go".  I felt sad but inside, happy that I wasn't the only moron.  We shared our feelings of how we felt stupid and frustrated and for once....it was nice to know, I wasn't alone.  This isn't OK for us to feel that way. Something needs to change.

Now, a dear friend had pointed me in the direction of FSCD for residents of Alberta, to get funding and help. I think so far this is the best lead I have been given.  She is also the one who directed me to STA (Society of Treatment for Autism) and the recipient of the email above.  So, if you are in Alberta the following link will be of help  Government of Alberta

If you can help me find the way to dealing with this, please leave me a msg.