Change is..good

Something’s going on these days..Our beautiful little guy who was displaying significant “behaviors” relating to ASD has been listening, conversing, even engaging us in his thought patterns. Something that up until now hadn’t been that common. I don’t want to get my hopes up but these days I need a bit of hope. Many friends of ours are announcing that they are close to separation or divorce, I have a couple of friends going through serious medical issues and I myself am trying to figure out a few issues physically that I hope I can get resolved soon.

I’m trying to be more positive. Conscious that when T sees us stressed or upset, it only lends to him getting upset. (Which is never good)..We are still adjusting to the changes this has taken on our life but I can see the light at the end of the tunnel. It is so much about the balance within our family. When we are crazy busy or I’m away on work…he doesn’t do that well..but when we are all here and supporting him- he thrives…and that’s exactly what he did this weekend.

We went to the zoo. (Usually an incredibly stressful situation when I have gone along in the past with my 2 children) but something was different this time. We are trying not to be “NO sayers” and helicopter parents and our kids are starting to listen more. The key…we tried a Trust and Go plan with them yesterday at the zoo. I can see our little guy desperate to establish some independence and we are desperate not to have him run away (a habit that he has demonstrated many times in the past)..so we established rules as soon as we got to the zoo and talked about trust. We gave our T an opportunity to run ahead (which he is desperate to do all the time) and identified markers for him to stop and get a high five…

If you can believe, as much as we weren’t sure about this..it was the best thing for all of us. T got his independence and with a little deep breathing, we learned to chill out a bit and just let him have some fun…

The Big Race

Its the night before our first 5K and I am working on my playlist for my run. I wanted something that would keep me going…remind me why I’m doing this…

I RELY on thinking about T’s fight to motivate me…it was creating enough anger inside that running became the perfect outlet to vent all that out. Except something has changed recently. I finally came to terms with the fact that my son is different and that as much as I feared the label “special needs’, the truth of the matter is, he does..(have needs that are different and specific)..and so all that anger that I had, has given way to a slightly calmer, more accepting version of myself..

Well crap…didn’t I time that wrong? In all sincerity, the last 3 months have been one of the biggest roller coaster rides we have ever been on…all we could do was focus on survival…getting through it…just getting through it. But we realized something. Survival is simply what its like to be a parent.

Regardless of T being Autistic, he’s still a little boy who, like many many other little boys his age, is in that stage that struggles to communicate what they want and when they can’t they get frustrated. He just happens to get a bit MORE frustrated and acts out physically to compensate.

And so life has changed for the better. I now realize why Autism Speaks has the 100 day tool kit, we are almost to the day since diagnosis and this is the first “bright spot” I have seen.

I head into this run, not angry…but excited about accomplishing this goal and working towards some new, healthier ones…

Putting on a brave face

I’ve always been a glass half full kind of girl.

My life’s focus has for the most part been on the optimistic side of things, the cheerleader, the positive vibe, bringing everyone up when they’re down, making people laugh.

In an effort to be straight up through these entries, I’m not doing so good at that these days.

Since we began this journey, I have been frustrated, deflated, heartbroken, depressed, to the core sad, and madly, deeply in love with my son..and felt like I couldn’t really say that to anyone aside from my husband. Instead I would run to vent through the frustrations. Use physical energy to help dull the emotional energy that keeps welling up inside me.

When we tell people, we are experiencing what I would consider one of three reactions.

1) THE That’s really sad, tilt your head “oohhh’s”, pity look (which I hate)

2) THE No big deal, you guys are great parents and he’s lucky to have you, he’s not any different than he was yesterday, sweep it under the carpet, NEXT…

3) THE No clue what to say stumble..NEXT…

I want to talk about it cause I am aware that talking about it helps clear the air, get things of your chest, make you feel better. But I don’t want to burden anyone with talking about Autism and what we are experiencing because it feels uncomfortable. I’m embarrassed for having these feelings…I feel weak because every time I talk about it, I get a huge frog in my throat and usually start to tear up.

I wanted to tackle this head on. Become the model parent who has it all figured out and has truly taken on the form of “ADVOCATE” for my son.

A bit of a lofty goal as anyone going through this will attest. As much information as you can absorb, as many resources you can tap into as many blogs as you can read…there are some hard, heart-wrenching emotions you need to go through before you get used to something like this. Its been 3 months and we are just starting to get there. Where we are passing through the grieving period and getting down to business, trying to figure out what our next steps need to be for T. For anyone who is reading this with a new diagnosis, cut yourself some slack….you will need time to process this before it starts becoming something you can accept. But from what I read, and hear…nobody is alone in feeling this way.

If you haven’t come across it, a good starting resource is the Autism Speaks 100 Day tool kit http://www.autismspeaks.ca/en/after-diagnosis

Its American but at least provides solid information on what you are dealing with in the 1st 100 days of diagnosis.

Competition is fierce..

This feels true on with so many elements of my life right now. The good side of competition..My friend and I have actually managed to start running and are currently out there every few days trying to get our groove on and waiting for this fabulous running high that is so famously talked about…Instead our comments are mostly, “Oh my god, my legs feel like lead” or “are we done this round yet?”

See part of the Running Room philosophy is working your way up to your goal distance and then exceeding it so you are not dying at the end of the race. Our goal is 5k and so far we have done a number of runs at 7-1’s…which means we run 7 minutes and recover for 1. Repeat. Except now are we on 10-1’s…& that sudden jump to 10 minutes of straight running has totally kicked my ass! But here in lies the good part…my dear friend is highly competitive.. and while I didn’t think I was that much, I find that I am enjoying her need to compete as an incredible way to egg us on and keep us going (cause there is NO way in hell either of us are going to be the one to give up first!)

The dreaded 10 + 1’s weren’t as dreaded as I thought but I also am noticing that I am out of breath by the time we are finished…(I think our pace got faster and faster as neither wanted to be the “Lagger”) which is good right? They say getting your heart rate up is key to getting healthy and staying fit. Quite hilarious given that its taken me until I’m 36 to realize that perhaps healthy is something we should have been concentrating on. This has been largely motivated by feeling like we need to be an example to our kids vs. heading down to the couch and throwing on the TV/PVR. We have been witness to WAY too many kids shockingly overweight at such early ages in their lives, and are keenly aware how easily it can happen to our children. So we are bent on getting healthy.

My husband is back playing hockey, I’m doing running, the kids are in swimming and gymnastics and we have lots of plans for exercising this summer..& another part of the competition? In an effort to stay grounded through everything going on with our son, we are working hard at maintaining our relationship (we had read odds of increases of 80% on the possibility of divorce with a special needs child). So we have upped the date nights, set aside time for conversations that are painful but essential and are working together on this weight loss drive..part of that is agreeing to meet weekly for a game of Squash at lunch hour..and it our first one today was awesome! Nothing like two parents completely frustrated with “systems”, red tape and bureaucracy having the chance to WHACK a little tiny ball HARD against a wall…over and over and over again…HIGHLY recommended.

Hello Autism…

My son, T at 4 years old, was diagnosed with ASD (Autism Spectrum Disorder) 2 months ago.

By the time the developmental assessment came up, it had been so long ago that we had seen problems, we almost didn’t take the opportunity when it came up. (It had been over a year since we were referred). The issues that had initially created the need for the assessment had seemed to subside (with a change in day care locations) and T wasn’t behaving the same way he had when he was there.

BUT there still were occasional questions of the way he behaved at times so we thought it was worthwhile to get a final answer once and for all and help us stop wondering the What If’s??

So we went. Well, T and I went for 2 full days. Two days of watching him get utterly exhausted as he met with everyone from a Psychologist, to a Speech Pathologist to a Play Therapist to an Occupational Therapist to a Neurologist..the list seemed endless.  I was able to sit in on a couple of the interviews but to be honest, I’m not sure if that helped or hindered. He kept looking at me with curious eyes wondering why I was making him do all of this. More than once, he asked if we could go home.

Internally, I wanted to leap from my chair, grab him and run for the exit, the momma bear in me uber-protective and desperate to give him a break. There were a number of times I knew he could have gotten an answer if only they asked it differently, but therein lies the rub…this was standard testing and in that world, T didn’t do so well.

At the end of the two days, my husband and I met with the team of experts who had gone through the tests with T. They each recounted their experiences, indicating he was a polite kid with a happy disposition and in certain areas, quite smart..case in point when they were doing social examples with dolls playing and asked T to tell them what the dolls were doing next, he just said “the dolls are sleeping, they want to go to sleep”. A true indicator to them he was DONE with the tests.

Even with all the summations, it still came as a complete shock when they told us he was diagnosed on the Spectrum. Autism hadn’t even entered our brains. ADHD? Sure..he had definitely shown signs of lacking focus and avoiding eye contact but we thought they might even say that we were over-reacting and he was perfectly normal.

We left the hospital in tears. In shock and not having a clue what to do next. I scoured the internet when I got home but to be honest, it was way too overwhelming and so much of it didn’t feel like it pertained to us. It wasn’t until a dear old friend reached out who has a son with Aspergers, and gave us a run down of what to expect at the beginning of dealing with this.

I must admit, the first month sucked. We both went through versions of the stages of grief- anger, pity pot, guilt, sadness, bargaining and are close…(almost there) to acceptance.

We are now in the throes of learning as much as we can about Autism…finding resources, reading books, meeting with the school, meeting with the daycare, adjusting slowly to what this means for our family. We are cognizant that this might have an impact on our marriage, we are aware that we need to be careful on how we manage both kids. Not excusing everything T does because of his autism and ensuring L (our 3 year old daughter) doesn’t lose out because all the focus is on him. As my husband said recently, everything has changed and nothing has changed…he’s still our loveable, sweet little guy who has a rather endearing obsession with Thomas the Tank Engine and has a ridiculous ability to memorize words…but life as we once knew it feels like its changed forever.