Charlie’s first words
It’s been eight months since Charlie said his first word. Just before his fifth birthday. I remember the happiness and hope I felt. I kept thinking that this was finally it, that Charlie was going to be able to communicate, which would in turn decrease his frustration. But I also remember that sinking feeling that it was too good to be true and that this breakthrough wasn’t going to lead anywhere. I was trying to protect myself because autism regressions are common, and it’s always heartbreaking for us to see Charlie take one step forward and two steps back. Damn autism!
As a parent, seeing your child struggle is difficult, and it’s even more difficult when it’s so totally out of your control. We are always researching the best therapy options for Charlie, listening to his needs, and seeking advice from professionals when we’re unsure what to do when problems arise. We do our best.
Autism and the complexity of emotions
When Charlie finally started using words to communicate, I felt more than just happiness. I felt a range of emotions including fear. There’s a complexity to naming emotions related to autism that words alone cannot convey. From an outside perspective, and by “outside” I mean anyone who isn’t Charlie’s parent, his first words were just amazing, but to us it’s something complicated that I cannot explain easily.
Eight months later, Charlie hasn’t progressed much. I did hear him say “mommy” a few times, and the first time was just incredible. But the thing is, he doesn’t really mean these words. He mostly repeats them because you ask him to. After the euphoria of the first few “mommy”s it hit me. Charlie doesn’t even know I’m his mommy. He doesn’t know it’s my name. There’s no running to mommy because he stubbed his toe or because he had a bad day. The meaning beyond the word just isn’t there.
Charlie is now able to imitate sounds but besides a few basic requests like “push me” on the swing, “open door,” and sometimes “all done,” his speech isn’t intentional. He doesn’t come to us to communicate.
Stop trying to make parents of autistic children feel guilty
People online are always trying to make me feel guilty for sharing my true feelings about autism, especially other autistic adults, and I’m sick of it. I know I’m not the only parent of an autistic child who feels this way. Raising an autistic child is hard for us. No, it doesn’t mean we don’t love our children. Our special kiddos are wonderful, unique, and NOT less-than, but like any parenting journeys there are also struggles. Perhaps these struggles are a bit harder than those of neurotypical parents. One thing I know is that they’re different and many of us lack the resources and support to deal with our feelings. I’m lucky enough to be able to see a therapist and talk about these things. Before that I believed those strangers who were on the internet telling me I was a horrible mother for feeling sad that Charlie didn’t talk. I thought something was wrong with me.
I had stopped writing about Charlie and our personal Autism journey for for a while because honestly I was scared. I’m scared of people on the internet. I’m scared of checking my emails when I wake up in the morning. I don’t have thick skin. I’m scared from years of being bullied at school as a child and I yearn to be accepted and to fit in. That said I stand behind my statements. Autism makes me sad, for me as an autistic mother, and also as the mother of an autistic child. Charlie knows I love him no matter what. Verbal, nonverbal, autistic, neurotypical, I don’t care. Charlie is Charlie. If he never calls me mommy intentionally, I will still love him just as much. Sometimes feeling sad because I’m craving these moments I had fantasized about when I was pregnant with my first born doesn’t make me a bad and unloving Mom. It makes me human.
Jeanine Bennerdt Hammer2018-08-08 at 7:26 AM
It’s okay to feel this way and I’m sad you get such bad response from it, after all we all want what’s best for our children autistic or not. I can relate to allot of what your saying. I also had a tough time at school and my autistic child (also my first born) is going to school next year and I’m very anxious about it.
I think you seem like a great mother , and I love reading about your life it’s nice to able to read about someone in a similar situation.
Daniel2018-08-12 at 2:21 AM
Thanks for sharing your feelings. We live in an age where people online expect nothing but perfection and are quick to judge. It’s either 0% or 100%, nothing in between.
Expressing our frustrations is viewed as judging our children as being LESS THAN, or worse still – promoting ableism.
Why does it have to be so black and white? I love my child 100% and I can see he wants to communicate verbally more easily. Hence my wishing he learns to talk more isn’t demeaning nor dismissing his other amazing qualities. When did wishing for clarity of speech become a bad thing? I’m helping him build speech via play – if that is promoting ableism, then I guess everyone should just be content with not growing and not advancing, typical people included.
Eileen2018-08-13 at 5:39 PM
I felt so happy reading your comment. It’s comforting to know I’m not the only one to feel this way. I really dislike when people accuse me of promoting ableism. I mean, I’m autistic… and I love my autistic son so much. You’re right, it doesn’t have to be all black or all white. I wish people understood that.
blaison2018-08-23 at 7:08 AM
Tu es une maman merveilleuse <3