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.
