"That Mom"

I heard someone refer to me as "that mom" today, like it was a bad thing.

Yup, I'm "that mom". Go ahead roll your eyes, I'm used to it. I'm nice about it, I try to be anyways, I am always respectful of the process. It's necessary to be respectful because I expect the same and when we show up with a need, I need all the parties on board. I chose to be "that mom" because my boys need school. They need the social experience, they need the friends, they need time away from me, time to not be completely dependent on me. School for us is a great place to test everything we work so hard on. Problem solving, socially acceptable behavior, friendship, respect, emotional regulation, self advocacy, team work. I often feel more like a moderator than anything. They have a hard situation, I work with them to find resolution, I work with the school to find more understanding, then go back to the boys with solutions. I'm so thankful for our school for being so amazing with this process and our teachers have been so understanding.

But, what I really hate about being "that mom" is the fact that many people don't realize what it means to be "that mom". Really, I'm not just a busy body, I have plenty of other things to do, but I'm advocating for my children, and nothing is more important. I'm helping them by working with the system to facilitate an environment that they need to thrive at school. I am making sure that my special needs children are not lost in the system. I don't need everything changed for my child, I don't need anyone tiptoeing around them, I don't ask for anything that is contradictory to what is outlined in the Alberta Education Act or Inclusive Education Policy and I certainly have no illusion that anyone can "fix" them, absolutely not. I need little things that make a huge difference that will help my children to function well in an inclusive setting. Sometimes that takes tweaking, which I have been doing this week, not just at the school level, but at home as well. We have done a lot of work and had many many conversations at home this week, on how to deal with situations they have encountered already and what expectations look like, not just education expectations, but social and emotional as well. As the years pass, I need to advocate less and less as my boys are learning, through a lot of hard work, to advocate for themselves and their needs change as they learn to find their way through different situations. I'm so proud of that.

I'd much rather hide them away from anything that could ever hurt them, but they have so much purpose in their lives and they are showing me, even in their struggles that they have so much to give to the world.

Trust me, the eye rolls about being "that mom" don't really add much to the already self inflicted feeling that I'm being a bother, even though I've always been reassured that I'm not. My children are vulnerable and they carry things with them for a long time and it scares the piss out of me. It's embedded at this point in our journey that I can't trust that every day will be a great day and that they may run into a person or situation that will imprint a negative message that will take a lot of work to unravel. They can't just shake it off. I have to be very diligent to make sure plans get followed, ILP's are in place, everything is going well. I've had several impromptu meetings already this week and I do have to say that I so love our school and teachers that I am always greeted with a smile and genuine understanding. What a blessing. But I still feel like I have to always be up everyone's ass and it's exhausting. I know it's fear based, I worry about my boys all the time, my heart literally aches all day. When one of them walks out of the school with a smile, it's like I've won the lottery. It's one step closer to knowing that they will be okay in this world on their own. That's our end goal all the time, helping them to function well, on their own. It's been the goal since the moments they were diagnosed, and it needed to be the goal, it's been the fire that has kept us on track. I would literally find a way to flip the world upside down if it would make things easier for them.

I know that got some eye rolls, probably by people who know my boys or have at least met them. It's called invisible disabilities. For the most part, you wouldn't really be able to tell that much that they both struggle with aspergers and you probably think I'm overdoing it by being "that mom". "They look normal". Yup, they are normal has become one of my responses to this statement. But just because someone looks normal doesn't mean there is not a struggle happening. This makes it difficult to get the help they need. Many would even say they 'act normal'. Good for them, that they have come this far, that when they are in a social situation, without me there to police them, they are able to mostly control their actions or at least articulate their needs by words or actions. That's so promising. That's a lot of hard work. That is many many hours, years of hours, of hard work and commitment.
That's night terrors, cuddles, medication trials, head banging, stimming, holes in walls, suicidal thoughts, anxiety, fidgets, doctors, deep deep conversations that would blow your mind, honesty, patience, reassurance and love. Most of the time for them at this point, it's just a matter of them stifling that anxiety until they are in a place they feel safe and they can let it out ~ home. And that's okay.

So, as I wrap up writing this Adam, who has been screaming for almost 2 hours now, is getting a little quieter now, that's my que that he's ready to talk. I'll continue to be "that mom" and my children will thrive because of it and I'll ignore the eye rolling, but shame on anyone who does it anyways. I'll likely continue to feel like a bother, even roses have thorns for a reason, and I'll continue to volunteer as much as I can to show in my own way that I appreciate the extra effort. My boys will continue to grow and become amazing men and the world will be better for it.

Oh, added bonus, when I'm advocating for my child, I'm actually advocating for all children. All children benefit from inclusiveness and understanding. You're welcome. I'll be "that mom" and I'll wear it like a badge of honor. I've already been rewarded by having these two amazing sons.

World Autism Day

It's World Autism Day today. I'm generally happy that this day exists, it is a good reminder to many people that autism is real and affects a lot of people and families. Awareness is always good right? I'm happy that awareness has come far enough to devote a day to the cause...but...

Please don't only acknowledge autism today. Understand that for some families it is Autism Day every day. My family included. My boys both have aspergers. I have heard from so many people about how I should not "label" my children. I have two words for those people, today they will be 'shut up'. You are not helping erase the stigma, that kind of thinking is part of the reason there is stigma, that kind of thinking deters parents from getting their kids the help they need. You are essentially saying don't dare say they have autism, I am saying they should not be ashamed if they do. To me not getting an accurate diagnosis means I can't effectively help my kids because I don't know what is going on with them. Is it because they don't "look autistic"? Well then tell me what autism looks like. Oh, sorry, autism in many instances is an invisible disability. I guess we will just have to treat each other with respect not knowing what any of us are struggling with. What a concept.

I've never kept the diagnosis away from my boys, they have known as long as I have known. I am always honest and upfront with them, about everything. Instead I have taught them what autism is and that we all have our own story and it's okay. I hope they always embrace their autism as part of them. It is their story, I have no right to keep that from them. That being said, when it comes to their peers, I have left it up to them to tell whomever they want, whenever they have wanted to, with the option that I can help them and we can make it as grand or as simple as they chose. They have on their own, in their time told different peer groups and it was a non-issue. As insignificant as anyone's knowledge that Susie is allergic to peanuts and Tommy has red hair. Their peers have accepted it and not given it a second thought but gained a little knowledge that "hey now I know why Adam is bothered sometimes" and "yes it is okay if Aaron has a walk about when he needs it." Oh if the world would be so accepting as a child. Somewhere as we have grown up we have let cynicism and fear in and it has molded our beliefs.

I've have always been fiercely proud of my boys, they are amazing. They are so smart, creative, handsome and funny. They also know how to make me smile. I've never been nervous or shy to tell anyone they have aspergers, although I could do without the pity I get sometimes. I don't need anyone to say sorry when they learn this. I'm not sorry. This is who they are and I wouldn't change that, although of course I would change some of their trials, I don't want life to ever be difficult for them. I actively post on facebook about their struggles and their triumphs, probably more than some would like, because we are not ashamed or afraid of the diagnosis, and no one should be. I hope that I present myself as an open and informed enough advocate that if someone is curious they can ask me anything without fear of offending me and I will give the best answer I can. I get many many messages from people just asking for some guidance for themselves or if they can connect me with a friend of theirs. That thrills me. I wish I had more of that while we were weaving our way through the unbelievable maze of diagnosis, the health care and mental health care system, school, home, blah blah blah. What a journey then, what a journey now. It doesn't necessarily get easier as they get older, it just changes. I feel my boys have come a long way from early diagnosis until now but even though we have our routine, we deal with new things all the time and it's a challenge for us as parents to figure out a way to help them make transition to any change easier. That includes changes their bodies make as they grow, I won't even get started on puberty, which yay for us generally comes earlier to autistic kids. I know I know, routine works, but only until the routine doesn't work anymore.

Parenting autism has certainly changed who I am as a person. I'm more open, more honest, more real. I call things as I see it. I jokingly say to my fellow warrior moms that it surely must be contagious because I think I caught it from my kids. Meaning I see the world, for the most part, the way they see the world. I am always on high alert to situations that might not go well. I hear the lights buzzing, I feel the itchy clothes, I feel the struggle, which some days terrifies me. I don't necessarily divert from those situations, they need to learn to live in this world, but I do try to teach them to be alert to situations and to prepare themselves accordingly. I also sit in awe of their amazing minds, I burst watching them overcome obstacles no matter the size. I don't expect the world to have the empathy of a special needs mom. It's a strange space to sit in, seeing and feeling the the workings of autism as intimately as we tend to as ASD moms, but at the same time being typical ourselves. It causes anxiety, extreme exhaustion and very low self worth. I've often referred to myself as the sacrificial lamb, although those words physically hurt me to say, some bad days I literally lay myself down to serve the demands of autism and what sometimes feels like unconscious abuse from my boys just to get them through unscathed. The end of those day when there has been no little to no empathy or apology, it feels very sacrificial. And when you are crying in the dark reflecting on a day that logically makes no sense and you are only happy you all survived, those days, when routine didn't help and you are really just surviving in hopes that tomorrow is in fact a new day, those are also Autism Days. I sit there in the dark and try to breathe hoping the next breath doesn't bring on that long overdue anxiety attack. I contemplate having a glass of wine, which seems to be the remedy for so many moms having a "hard day" but I don't do it because man oh man if that is the answer to a hard day, I will surely become an alcoholic very quickly. It's the reason I never drink honestly. I really don't do much, wish I could write in this blog more, but damn for a lady that does nothing, I am one busy bitch. Ah, wait, I don't do much for me. Keeping my kids afloat is going to have to be considered what I do for me for now. I have lost several friends because they don't "get" my kids, I don't have enough time for them, my schedule can change completely at the drop of a hat. That burns. I see them post about World Autism Day and I really just think they don't get it.

As luck would have it, this day finds me sitting at my desk filling out a form, another form, this one for genetic testing to try and figure out Adam just a bit more. His anxiety is just so extreme, it's scary. But damn, this form is expecting me to remember ailments I had during pregnancy, when and for how long, including things like headaches. What's that? Oh yes I forgot, this is the process, sadly a huge reason parents give up. This form has been taking forever to get done, partially because it's just another reminder that my children will always have some struggles and that is an emotion that rears it's head with every appointment, every form, every assessment, big sigh. Okay, enough for this facebook post turned blog for today, Jake is calling around to get information from his siblings now, yes it's that in-depth, Aaron is you-tubing and building a model and Adam is beating the hell out of his drums in a very rhythmic math, the different drums are like numbers in a pattern. Thanks for taking the time to read this far. Now you know even more about me and us, I hope this wasn't all babbling.

Please support autism awareness by being inclusive with kids and their families, please don't judge when you see someone with a "difficult child" in the store, offer a hand instead, don't pretend you know how you would do it differently, just be kind, be like a child. Please help eliminate stigma, it scares people into not getting help.

And my message to anyone suffering with anything, share your story, the only way to eliminate stigma is to add awareness. Stigma comes from fear. There is power and healing in owning your own story and I commend anyone brave enough to do that.