If you see yourself here, know that my husband and I have grown as parents and advocates for our child by your interaction in our lives. While our child was young, we were the ones who were being judged, but we knew the situation. Unfortunately, now our child is older and HE is the one being judged – and he understands. He is still a child – only 9.
To the TSA agent who told me I “needed to take a belt” to my non-verbal 2-year-old who was distressed in the security line before we had to get on a flight – he didn’t cry at all on the plane. It’s just the airport that triggered all of his over-tuned senses. Because of that experience, we lost hundreds of dollars several years later when, after hearing about an airline dropping a traveling family off in the middle of the country because of their autistic child, we cancelled flights for his cousin’s graduation. Only I went. His fear of the airport is long gone - he is now an excellent traveler.
To the pre-school teacher who continually slipped into conversation how she didn’t really think our son had autism because he was “so smart” – yes, he is what they call “dual-exceptional”, and yes, he has autism. That makes it so much harder in some ways because he has a clear understanding of his inability to control his big emotions and continually feels bad about himself. Your questioning his diagnosis didn’t help and yes, I understood the implication that he was just poorly behaved – maybe due to parenting.
To the mom of a child in our son’s Kindergarten class who told me that it “rubbed [her] the wrong way” when I called my son autistic – just because you are a retired social worker doesn’t mean you get to tell me how to refer to my child. It is our choice how to deal with our situation. We get to choose how we refer to ourselves, each other, and our family. You can have an issue if I refer to someone else’s child in a manner you don’t prefer; but not when I refer to my own. None of your business.
To the school special education director who wouldn’t let us talk to our son’s class about autism because you didn’t “want him to be labeled” – he was being labeled. He was being labeled as a cry baby and as weird, but for some reason that was o.k. And to the Community School director who pushed through the activities and made a week of Autism Awareness happen because of your love and understanding for our son. Thank you, from my whole heart.
To the first-grade teacher who told me that our son was “disrespecting” you because he had a meltdown – you knew he had a diagnosis, but apparently you don’t know the definition of “disrespect.” You confirmed that he didn’t call you names, or spit on you, or kick or hit you; he screamed and cried because of a situation you had nothing to do with. Not appropriate, but not disrespect. Perhaps you should educate yourself on at least one of those two things. Making him stand in the hall and ostracizing him from his class definitely didn’t help his idea of the importance of teachers in his life.
To the parents of the family who encountered our son in distress at the amusement park – he had worked so hard to slow down the giant water sphere so that its rotation was more consistent with the rotation of the earth. He was engaging in perspective play which is something that helps him order his world. Your children came over and sped the sphere up and he reacted poorly. There is nothing wrong with what your children did, and yes, his reaction was inappropriate, but instead of offering a little grace when seeing another child in distress, you stared at him with judgment and then quietly told your children there was something wrong with him or he was spoiled and you all walked away with judgmental and ugly looks on your faces.
Autism isn’t something that is readily visible on the face of a child, but distress is, and you would want grace or kindness for your own child if they were in distress. Instead, we had to have a family meeting to discuss with our 9-year-old son if, in those situations, he wants us to tell people he has autism, he wants to find a way to advocate for himself, or for us all to just stay quiet. I never want him to feel like I didn’t stand up for him, but this is beginning to be more of his story to tell and we want to support that as much as possible.
To our families living the “spectrum life” – the ones who know our fears, our pains, our frustrations, and our incredible joys and amazement in this journey – we are with you – we are all in. Your stories are the same – different places, faces, comments, ages, times, but the same. Know that we will carry your bags and water bottles out of the gym while you carry a large, overstimulated child out over your shoulder – just as you have done for us. Without judgement. We will sit by your car while you calm a child in the middle of a meltdown – just as you have done for us. With patience. We will not wince when your child overreacts in a movie theater or gets so anxious that they have to watch the movie upside down to stay engaged. We will chuckle with understanding. And we will not judge your parenting decisions – they are all tailored to your child’s unique needs – just as ours are. Just as everyone’s are.
And to our family and friends that support and love us always and unconditionally, even when you don’t always understand – who engage our son on his level and always take the time to let him know that he is important - that’s all anyone, neurotypical, or atypical, ever needs. Isn’t that what we all need?
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