DISCLAIMER: I know that some of the terms that I use and highlight here are controversial, very charged and maybe upsetting. Any other day I would agree with you on that. But today I need those terms to express my feelings accurately. As much as they may hurt.
Sometimes, I almost forget that my son is deaf. He is always so energetic, cheerful and lately chatty that it is easy to ignore all the hardware that he wears in his head. He seems so “NORMAL”.
But then, out of the blue, I am reminded that he is not, that he has a disability, that as much as I try he will never be able to do EVERYTHING, and that life will always be unfair for him, mainly because fellow humans, especially adult humans, often have a way to remind us.
The first thing I promised myself “that” day, the day when I found out that he was deaf, was that his deafness wouldn’t define him and that it wouldn’t prevent him from doing anything that his “ABLE” brothers can do.
For the most part I have kept that promise, often with the help of his wonderful providers, from organizations like the YMCA, which did everything they needed to accommodate him when he was learning to swim, or from schools, particularly the current one, OLMCA, the same mainstream school that his brother attends, the one that took a leap of faith when they accepted him as their first deaf student. For now, it has been a success: he is perfectly integrated and liked by everyone, and, although he still has a long way to go, he is doing well enough, he is happy, and he has made noticeable progress.
But setbacks like the one we encountered today are a huge reminder of the fact that what I prefer to call SPECIAL NEEDS are really a DISABILITY and a condition, and that, unless I spend every single minute of the rest of my days standing by his side, life is going to suck a bit more for him than for others. Life is always going to be unfair for him.
As I said at the beginning, I almost forget that my son has a disability. After all, he is ABLE to do most things. He is getting there with speech, and can have short conversations with strangers. He has learned how to play endless games, can dance and sing, and is starting to read. In six months he has learned the names of dozens of people who populate his school. This may seem like a small feat to you, but to him is a huge victory that took lots of effort.
Technology is awesome, and without it this journey would have been very different for us. But I will keep self doubting myself for every decision I have taken, from the Cochlear Implants (CIs from now on) we chose for him (so far he loves them), to our choice to try a mainstream school in the hopes that we can keep living in the city we all love.
But then, today I was told that he has to leave an aftercare program because he is being disruptive. And as much as I understand that decision, in a split second I was devastated, and my perfectly controlled world fell apart a bit. I totally understand that the other kids have a right to enjoy the activity without someone misbehaving. I don’t disagree with the decision to remove him from the activity. But it sucks.
It sucked even more when I checked his batteries, and I saw that they were dead. And when I pointed out that the bad behavior probably stemmed from not being able to hear, not to get him back in the program, but to educate the provider. When I was told in return that he turns the CIs off on purpose, I just lost it. Because it is simply not possible for a kid to turn off this particular CI. Because some people don’t seem to understand that the CIs don’t help him hear better. They help him hear. Period. He doesn’t hear a thing without his CIs.
The mere suggestion that he turns them off himself would have triggered the angry lion mom in me, but today I was tired, and sleep deprived, and speechless, and all I wanted to do was cry the fuck out of there.
And then I called his father six times, and he didn’t answer the phone. And I understand that he has a job. I truly do. But so do I, and I don’t have the luxury of being able to check out. I am always the one who is there to receive the bad news, to be given the diagnoses, to be told that he is deaf, to be told that he has epilepsy, to have to quickly gather my kids and their things and whisk them away, because I know that the bad report, the bad news, the bad day is going to make me start to cry, and I hate crying in public, I hate for anyone to see me as anything other than the strong mom “que puede con todo“, the mom of the of the complicated kids who is still cheerful and who is pulling them forward (and I am fully aware that that is not grammatically correct, but at this point I honestly don’t care). As much as you want to share responsibilities, there is always one parent who takes the blunt of the weight that having children with special needs carries. Because, let’s be honest, it is a load that some days feels as heavy as the world that Jude carried upon her shoulders.
And I am way more liberal with my written tears than with the public ones, and I take my journal, or my laptop, or any random piece of paper, right now my phone, and I write my tears away so I can go back to my pulling position, to cheerful me, to strong lion mama who will deal with the deck of cards that life has dealt her kids the only way she knows, pushing forward. I know that writing and a cigarette will do wonders, and in moments like this I wish I liked whiskey, because I could use a slow glass of strong scotch.
Since I don’t, I will have to keep going out every now and then. That may seem careless, and not the doing of a very devoted mother, but those hours in which I have a few drinks, and dance away my worries, and let go, and laugh, are what keeps me afloat, what allows me to be me for a few hours, to meet people for whom I can pretend to have a normal life and to be a whole other person, the person I was and I would be if all this crap hadn’t happened to us; the carefree, less wild than she would have liked, and sometimes funny gal who always had a comeback, and not only the mom of the special needs kids who sometimes, like every six months, leaves some place in tears after a stranger reminds her that life can suck. That life is unfair.
NOTE: this is not a complaint. It is just the reflection of a reality that millions of parents confront on a daily basis and that more often than not are too tired or too busy to talk about. Parents who I hope are as lucky as I am, so they have some kind of outlet, be it writing, dancing, running… Anything that makes them feel like themselves every now and then. If you know any parents like us, help them do that every now and then. So they can keep going.
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