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…

Looking at the Bright Side


I didn’t want to write last week because I had hit an incredible downward spiral of sadness. I couldn’t even figure out WHAT exactly it was that was making me SO depressed…I just kept launching into teary, almost can’t breathe convulsions…an ache in my throat and in my heart so vivid that I started wondering if I was manifesting some crazy physical ailment from keeping everything inside.

You see, my intent with this blog was to help people stay positive in coming to terms with a child who has special needs. When I was searching the blogs initially, I felt like there were two kinds of bloggers…those who gave the raw straight up goods (which was causing complete anxiety  on my part) and those who kept focusing on how beautiful, bright shiny star and loved their children were…(I would kind of hope everyone feels that way but I think it was the stay SUPER positive coping mechanism)

I have seen a number of parents through various “resource” meetings we have gone to, either angry, confused, sad, or frustrated. I haven’t seen that super positive but then again we are all at the beginning of this.

The truth of the matter is, I have been through challenges in my life… and fought through them. But this experience of discovering my child has Autism, is something that caught me off guard, threw me for a loop, kicked my ass and no matter how much “fight” I have in me..obliterated all the positive for awhile. But I’m back…hiking up the hill on this journey focusing on What’s next vs. the Why..

So what caused me to totally lose it last week? Completely… confusing my husband as to why his usual bubbling wife kept falling to pieces in a heap on the floor?

I haven’t been talking to anyone about this. I didn’t know how to bring it up…

I WANTED to talk about it with my friends but didn’t want to become that friend who only ever talks about one particular piece of their life and trying to explain all the ups & downs we have gone through already…I felt ashamed to admit that I was having a hard time dealing with the term “Special Needs” (given I grew up in an environment where both my parents worked in a sector of government that supported “Mental Retardation”.)…and those Special needs kids were very different than my son. I felt like a number of my family members just didn’t want to accept it, and I don’t think I did either for awhile…

And then a beautiful friend sent me this out of the blue..

I just wanted to say that I hope you realize that you don’t have to be brave all the time. That you don’t have to put a smile onto all the shit that has happened. I know you have to deal with it and I know you will, but I hope you know that I am here for you and if you’ll let me, I will be that person that listens to all of it, all the tears and the rage and the anger. Anytime. Always. You know there is no judgment here, that is the thing I hold onto most sacredly in our friendship. I know you have to move forward, but those moments of letting it all out are part of saving your sanity and I want you to know that I totally understand. And I’m totally here. 

It was exactly what I needed to hear. Someone there to listen, no judgement, and accepting of all the stuff I needed to say. If you are overwhelmed and on this giant learning curve, remember to keep talking. It will get you past the tough and keep you focused on the positives all those great bloggers were writing about.

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.