April is Autism Awareness Month. Autism Speaks, an advocacy program, began back in 2005 and created Autism Awareness Month. Every April 2, this awareness program/campaign/whatever you want to call it kicks off with buildings worldwide lit in blue, people wearing blue, and just blue, blue, blue everywhere to “light it up blue.” This is great, but as a mom of an autistic son, I can tell you that for many on the outside, it’s easy to celebrate Autism Awareness Month like it’s something fun, like a fad, or because it seems like the cool thing to do. For those on the inside, it’s a different sort of celebration, a party that you sometimes wish you weren’t invited to.
I get the impression with many of these awareness campaigns that we need to go deeper than just wearing a certain color and creating awareness. That’s a good start, but for those directly affected by the condition (whatever it may be — there are awareness campaigns for almost anything, like October being Breast Cancer Awareness Month), awareness is not enough. Some of us are all too aware. Those who are affected live it out every day of their lives, whether the person has the condition him- or herself or it’s a close loved one.
Let me be clear: There is nothing cool about celebrating Autism Awareness Month if all you wish to do is participate halfheartedly in something that’s widespread. Autism is serious. It’s no joke. While we do want to celebrate those who have autism, I wish to distinguish between celebrating individuals and celebrating as if you were invited to a Super Bowl party. There is a world of difference.
Before I go further, I would like to direct your attention to my two previous blogs related to autism. It will help you understanding better my son’s and my own experiences. They can be found here: Blessings in Disguise – What Raising a Child with Autism Has Taught Me and You Don’t Know What Goes on Behind Closed Doors – Raising a Child with Autism.
Now that you’re back, let’s continue. There is a popular video on YouTube called Welcome to Holland. Its purpose is to help you understand that it’s okay to take a different route when raising a child with special needs, even though this wasn’t what you signed up for. The video goes something like this: You board a plane to take a trip to Italy, but when you step off, you find out you’re in Holland. At first, you’re confused and angry because you were supposed to be in Italy. That was the plan. But as you start to look around Holland, even though it’s different than Italy and not what you expected, it has plenty of its own treasures. It has tulips and windmills, for example. So, the point of this metaphor is to find the beauty in your unexpected trip with raising a special needs kid.
There is comfort in this for some. At times, it brings me peace. When things are going relatively well with my son, Luke, it’s easy to celebrate the small victories he makes. I value his differences from a typical child.
But let me be brutally honest. There are many days when I hate Holland. I hate autism. I hate what it does to my son, the hold it has on him. It breaks my heart to see him suffer where others don’t. I want to say, “This isn’t the same thing as just stepping off a plane and finding out you’re somewhere else that’s equally beautiful! I’ve arrived in Antarctica!”
I can only speak from my experience, so please don’t think that what I say applies to everyone across the spectrum. While high-functioning autistic people are usually able to contribute to society as adults, they will always have their own set of challenges. I do not dismiss someone who is high-functioning or raising a high-functioning autistic child as having it easy at all. But my experiences do not deal with a high-functioning autistic child, so I will not be further addressing that.
Luke was diagnosed as moderate to severely autistic when he was not quite three. Because he was still very young, I believed he might outgrow the diagnosis. I thought he could, if not catch up with his peers, at least reach a point where he would be capable of forming longer sentences instead of phrases, that he would be able to answer questions (not just by rote), or that he would be able to tell us how he’s feeling and why. In those early days, I told people his condition was mild to moderate. I didn’t want to face the seemingly bleak reality that his autism was
more severe than we thought.
As he’s gotten older (he’s now seven and a half years old), progress has been made, but it hasn’t gone the way I’d hoped five years ago. There I go again, getting my hopes up as a parent, and coming away with the stabbing feeling that this isn’t going the way I wanted. It’s hard. I mean, really hard, to swallow that large pill of a serious diagnosis that scrapes all the way down and then settles in the stomach like a lead ball.
But admitting this as truth to myself and then to others was the first step of my own awareness of Luke’s true condition. Awareness was the starting point. Then came the challenge of acceptance. Acceptance, unlike awareness — at least for me — is a constant journey. The road is sometimes clear and straight. Days are going well. Luke is happy.
But then night falls. The path makes a sharp, unexpected turn. Fog sets in. Sometimes the road even drops out from under me completely. I’m left gripping on for my life, like trying to keep my head above water and not drown. Days are awful. Luke is angry, sad, or any number of bad emotions.
See, acceptance is harder than awareness. Acceptance is difficult for those who are closest to a loved one who has autism. It’s a challenge for some who have autism and know it. Let me be clear: I accept my son for who he is, regardless of his autism. His condition does not define him. It’s part of who he is, but it is not him. What I struggle to accept is him having autism — what it does to him, how it makes him feel or act, the challenges it gives him.
So, imagine how hard it can be for others on the outside to accept autism (or any condition). It’s easy to say you accept autism, that it’s a real thing that exists, but I’m going deeper here. People need to be accepting of individuals who have autism. That’s where awareness only goes so far. That’s where the party we’re celebrating goes from Super Bowl to something more: celebrating the unique abilities and qualities of people who have autism.
I can take this further by saying that accepting those who have any mental or physical condition/diagnosis or developmental delay is vital. Raising an autistic child has made me more aware across the board when it comes to seeing people for themselves and not their conditions. Like we all have different abilities and talents, quirks, nitpicks, tastes, or anything, those are parts of us, but not all of us. If I say I am a mom, it’s part of me, but not my entire identity. If I say Luke has autism, it’s part of him, not his whole person.
This awareness has brought more compassion into my heart, a desire to understand as best as I can where other people are coming from. Instead of judgment, I choose to embrace compassion. This world has enough judgment.
That child who is freaking out in the store may be throwing a tantrum because he didn’t get the toy he wanted, but he also might be having a sensory-induced meltdown that’s beyond his control. He might be autistic and overwhelmed by the bright lights or the noises in the environment. If he’s hungry or tired, the effects of that are far worse than for a typical person. Think of how irritable you can be when you’re hungry or tired. Now imagine it for an autistic person, especially a child who has limited (or no) verbal ability to express himself. All he can do is scream. He might kick, hit, bang his head, throw things, or scratch. He can hurt himself and others. He feels like his world is ending. Like there is no escape. All is blackness. That is a meltdown. Until it passes, you stand there, helpless. As a mother, it rips my heart a little every time.
Some days, I hold it together and can handle meltdowns in stride. It’s part of my life. It’s nothing new or unexpected.
Some days, those dark ones I described above, I fall apart, too. I have disciplined my autistic son for having a meltdown, despite it being beyond his control. I have yelled, cried, screamed. I then go into my closet and sob, the guilt setting in. I did it again. I failed to be a good mother.
But you know what? I don’t really fail. Because even when that tough road tries to knock me down, I get back up. I am a fighter. My son is a fighter. I advocate. I never give up. Never. Ever. Giving up is the only way to fail.
The road to acceptance is taken with every step of advocacy. Awareness started the journey. Advocacy keeps you and me going. I am the voice for my son, Luke, because he can’t be. I write these blogs to share my experience because I will keep fighting for awareness, acceptance, and advocacy.
We have been down the road of therapies and medications. There have been unreturned phone calls from doctors. There have been stubborn employees in the school transportation office. There have been people who have stared. I see the judgment in their eyes, but my concern is and always will be fighting for my son. I have called the right people to get answers and demanded the respect of getting in touch with the doctor. I have taken my transportation concerns to the special education department and gotten a solution within hours. I have resorted to begging with a secretary to see what’s taking the doctor so long, because my son is about to lose it in that waiting room, and waiting more than fifteen minutes past our appointment time is not acceptable.
That is empowering. To fight, to stand up, to be strong even when it hurts, that is powerful.
So, there have been pitfalls. There have been people who have made our journey tedious, but the vast majority of people we’ve encountered have been kind, generous, and understanding.
The most recent example of this was during spring break at the Y. I had signed Luke up for the Y’s spring sports camp. I was unsure of how it would go over because this camp is not aimed at special needs kids, unlike any other camp Luke has previously attended. The director welcomed him to attend, and if it didn’t work out, that would be okay.
Because we are members of the Y, I stayed and worked out for a couple of hours after dropping Luke off at camp. The environment was simply too overwhelming for him. The noise level of twenty kids running around screaming in the gym drove him to the breaking point. The result was not pretty. His meltdown was one of the most intense I’ve seen since we got him on a medication to help with his irritability (which had been causing severe, frequent meltdowns for months). I couldn’t blame him in the least. After ten excruciating minutes, he calmed enough for me to hold him in my lap, but he didn’t want to leave me. We sat in the gym for the next hour, but he was done. The director and the other employees were all understanding and nice. I was given a full refund. They were genuine with Luke, too, seeing him as a person worthy of attention and respect. They high-fived him, greeted him, called him “buddy,” and smiled at him.
While I say that awareness, acceptance, and advocacy are all vital to helping those on the outside to understand autistic individuals better, to value them, to respect them, and to love them, my overall experience has been positive in this regard. Society has made good progress over the years with opening the eyes and hearts of typical people to those who have some sort of condition.
There is still ignorance, misunderstanding, fear, and disrespect in the community, however. The simple act of calling someone “dumb” or “stupid” or the R-word is demeaning. Even in jest, it is not funny. Anyone who judges a person who has increased difficulty learning, socializing, or with life skills has missed a crucial mark of what it means to have their humanity.
Every person is worthy of love, respect, and understanding. Their conditions do not define them.
Autism is just one of many conditions. Let us be more than aware autism exists. Let us truly accept those who have it and work toward a better future of increased opportunities and happiness for them.
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