I have to admit I’ve ‘borrowed’ the title of this post from a children’s book I was recently given by KK’s auditory verbal therapist (AVT). She gave it to me to read after a particularly bad ‘screaming day’ with Kate.
Screaming days are intense. They are difficult, frustrating, and can be embarrassing. The scream KK has is very high pitched and very frequent. She uses it in any and all settings – including in public. At home I can employ the techniques that we have been coached to use by a behaviour therapist. I can also wear an industrial pair of headphones to help lessen the intensity of the scream. This may sound funny (they certainly look funny), but believe me they can be a godsend after a morning of screaming. I honestly feel like my ears are vibrating – possibly bleeding. I am not unsure that I am suffering hearing damage and possible hearing loss myself from KK’s screaming. She sounds like a wounded dolphin. It is ridiculous how that sound can come out of such a little girl.
In public the scream is a whole other matter. I sometimes avoid public settings if I know it will be a bad screaming day. Sometimes I forget myself and we venture out anyway, and those can be occasions that I regret. I have developed a thicker skin since KK. Comments from well meaning (or not) people don’t upset me as much. Having said that I can still feel the looks, the eyes following us, the shaking heads, and the whispered comments about ‘that child who is screaming’. It happens, and whether mal-intentioned or not, the looks and stares hurt. I am that mom with the uncontrollable child, the misbehaved child, the child who just won’t listen. I want to say back to them, “It’s not her fault, she can’t help it”, but I don’t. I apologize to friends and to family – even though I know I don’t need to. I sometimes try and muffle KK’s scream with my own hand. I rush through errands and have left groceries behind. And I feel bad. I know the screaming is uncomfortable and horrible. Believe me, I know.
We are working on the screaming. I started employing my own parenting discipline and addressing the scream whenever it happened. “No KK” I would say. “Stop!” emphasizing the word with an ASL sign for ‘stop’. Last year, KK’s nursery school teachers would try and ignore the scream and then reward KK when she stopped screaming. That technique seemed to get us somewhere and the scream seemed to settle down. In recent months it is back with a vengeance.
Enter the child behaviour therapist from the Ottawa Children’s Treatment Centre. Sarah called me a few weeks ago. I had forgotten that a child psychologist who had done an assessment of Kate early last spring had referred us to a behaviour therapist to help with the screaming. Sarah called at exactly the right time – just when I and the end of the rope were starting to meet up. I have to admit I was sceptical as to what help Sarah might have to offer us. She was a young lady, no kids, and really what would she know about stopping a profoundly deaf child with global developmental delay from screaming. Huh.
After the first meeting with Sarah, I found myself telling her that she had impressed me and that I thought working with her was going to “be a good thing”. Sarah assists children with developmental disabilities and their families by providing mediator training in Applied Behaviour Analysis (ABA) and Positive Behaviour Support (PBS), both of which basically mean managing the child’s environment and teaching new behaviours.
In KK’s case the plan is to track what triggers her screaming and to avoid environments that may trigger the screaming, especially on ‘high volume’ screaming days. The other goal is to structure ‘free time’ (e.g. in the car, during meal prep, during groceries) that Kate has so that she does not scream for attention or out of boredom. Sarah’s take on KK’s screaming is that it is both for attention and sensory (she likes the feeling/sound). Finding other means of sensory input for Kate is challenging and something we are still working on. A lot of the training to get KK to reduce her screaming is to teach her other means of getting attention. This is a pretty big challenge with a child who has few words and requires a consistent team approach among everyone in her life. The good news is that KK’s team is always up to the challenge – in that I feel confident.
As for the screaming, well I try to remind ourselves that KK is doing her best and that at one time we had limited communication. I try to stay calm and not get frustrated, though the screaming days can be exceptionally looonnng. I try to remind myself that this too will pass. Someday.