The Long Hard Road

Some months ago I was reconnecting with a high school friend on facebook, we were catching up on where our lives had taken us and how far it was from who we were in high school. When I described how I had felt back then (out of place, overwhelmingly shy and hopeless and unsure – but weren’t we all?) he told me he found that hard to believe. That I always seemed so sure of myself, so intelligent, so “together”. He commented that guys had been intimidated by me. Hunh. . .really . . . wow. I honestly had no idea. And it really got me to thinking about who I feel I am on the inside and how people view me on the outside.

I have always been able to write from the heart but put me face to face with someone and I have no idea how to express in words how I am thinking and feeling. I often relay deeply painful information in a matter of fact, even nonchalant manner. I don’t mean to – it just comes out that way.

Sometimes when I think back to who I was, as a mom and advocate, in 2004 I cringe. Don’t get me wrong, I am proud of the the fight I put up – the stamina that I showed in trying to get people to listen and to help us to help our son. But I cringe inside, remembering how raw it all was. How voracious I must have been. I did not have much practice speaking up for myself let alone for others – but here was my son, who needed a champion. If I didn’t do it then who would? So like many other moms I got on my battle gear and prepared to fight to the death.

I was lucky, I guess, that I am not a warrior at heart. I prefer peaceful solutions and am actually a good mediator. There were times where I felt backed into a corner, where I felt scared for my son and for his future, where i felt hopeless and helpless and that is when I fought. When I dealt with the mental health agency in our town that provides service to children from 6 years to 19 years old and the first social worker we saw told me repeatedly they had nothing to offer us. When my son in the first grade was being suspended and every day after school was like a battle just to walk home – 3 doors down, she told me that we weren’t in enough crisis. I fought her then, getting her to keep our file open, hoping somehow someone would know how to help us.

When our son began to do movements over and over for no known reason and then began with vocal tics so strong that he couldn’t get words out of his throat and he would look pleadingly with his eyes wide begging me to help him – I yelled loud then and demanded to see someone, anyone to help us. The Social worker listened then and we saw a Psychiatrist and she diagnosed Tourette’s syndrome and I felt relieved and sad all at once. THEN the social worker discharged us – no intervention, no assistance, just the diagnosis and a pat on the back and we were on our way.

From there things continued to snowball. My son constantly begged me to come close then pushed me away. He continued to struggle at school and get labelled as a “behaviour problem”. He got kicked out of every after school activity and childcare that we tried. I told people, “this is NOT just Tourette’s, this is something else”. I banged on doors and hounded everyone I could think of. I cried and begged people I had known for years, having worked in early intervention since graduating university.I felt dizzy from trying to navigate the “system”. We were stuck in a void. He didn’t qualify for developmental services and he wasn’t “bad” enough to qualify for the paltry mental health services available in our community.

I began to feel dizzy and sick to my stomach every time my cell phone rang. The only time it rang was if it was the school. And they called a lot. I felt like a horrible failure as a mother. I kept my head bent low when I went to pick up my son from school and willed for no one to say “Oh, Mrs. S . . . do you have a minute?”. that was code for . . . “your kid has done something (or lots of things)and we want to torture you with every last horrific detail”.

But over time, I learned how to hold my head high. We got more and more answers. We had more people on our team instead of it being “us” versus “them”. We qualified for mental health respite dollars and years later for Special services at home. He began to stay in school more and the calls from school came with less frequency and less intensity. We had a new social worker assigned to our family and though I battled hard against him and all I thought he stood for,he stood by us, by me. He listened to my rants and ravings. He got to know my son, the hard way, through years of living and fighting in the trenches with me.

So I look back on those years these past couple days and I do wonder could I have fought differently and still have achieved the same results? Could I have held a little of myself back and still done it all? I am so thankful for what we have managed to get and to do but I am a little sheepish about some of the raging that occurred on my part. I didn’t know it then but I was battling against myself just as much as I was against anyone else. I was battling against the irrationality of my son’s complex neurological makeup and the uncertainty. Not to mention the fear that I felt and the grief. Yes, I admit it finally, I was grieving. I couldn’t see it then. I couldn’t admit to it because it felt like a betrayal to my son if I did. That I was saying I couldn’t accept him for who he was. But I really did think that if we “tackled” all of C’s “issues” early enough and hard enough that we could alleviate a lot of it. I wasn’t in a place to accept or even to see that this was going to be a long hard road. I believed in my son and I wanted to accept who he was but I also knew he needed to be able to live in this world of ours. I knew it was going to be hard. I wanted to make it better and easier for him. Perhaps, along the way though, I could have made it easier for myself as well.

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