‘Early intervention‘ for Autism in Ontario has been in the news non-stop in 2016. The focus has been on who gets funding, but the most important topics have been left out of the conversation. This week we cover Patient-Centered Outcomes, Parent Choice, and Disability Rights.
The Outcome at What Cost?
While on the road the last two weeks, I experienced first-hand the type of interaction with our son that never feels good. Our son required medication for a number of days that we administered orally and it tasted awful!
Our son caught on quickly and refused to take his medication. It was a daily battle that lasted upwards of an hour. We found ourselves making ‘deals’ with him so he would take his medicine.
When you think about attunement and being emotionally connected with your child, having to trick him doesn’t come to mind. He didn’t ask to get sick nor to take medicine. He doesn’t understand it will make him better or why. Yet here we were resorting to this tactic to get him to take this very necessary medication.
We tried it all: “It’s only 5 days!” “It’s just a little bit then it’s done!” “You want to watch Chuggington? Just take this medicine then we can watch it!” “You want to go swimming? You can only go swimming if you take this medicine.” “If you take this medicine, you will get a special treat for being so brave.” “Well, Dada…I guess he doesn’t want to go swimming. We will have to wait until tomorrow since he won’t take his medicine” and so on… We even tried laying down the law and firmly demanding he take the medicine. That certainly did not work!
It felt like torture to me if you saw our son screaming “No!” as we held the syringe of medicine to his mouth, banging and shaking his head in protest, spitting, crying, kicking and protesting in any way he could. Dada pointed out we are not torturing him: he was safe and we weren’t forcing him. But in his world of this present moment, he was very distressed.
Watching our son plead to move on while in such a fight with us was difficult to endure, even though we were doing what was necessary for his health. Our son has been through enough medical crap in his life. Why this now, too? He doesn’t deserve this! It was emotionally gruelling and discouraging for both of us.
Do you know what finally worked?
It is not a surprise to me, looking back. We followed his lead, we went on his schedule and worked with him, at his own pace. We listened to his concerns by noticing the signs he was using to communicate with us. So what did this look like?
First I co-regulated with our son. I empathized with understanding nods and facial expressions. I told him that I knew that he didn’t like the medicine; it was yucky. I said that I was sorry he had to take this medicine, lovingly stroking his cheeks and assuring him it was making him better.
I told him he had to take his medicine and I gave him a few options. I asked if he wanted medicine in the syringe or in his brand new train cup that we bought, which he loved. He responded, “train cup“. I asked if he would like his apple juice so it wouldn’t taste so badly. He said yes.
Next, he mentioned a straw. The hotel had no straws. Luckily, a fast food place at the other side of the parking lot was still open after 6pm, so I ran there to get a few and ran back. We poured his apple juice and medicine into his new train shot glass ‘cup’. He took a small sip and made an ‘eww’ face.
We also were playing the cartoon Chuggington by now and let him watch some more. When he seemed ready, we gave him another sip. It took many, many sips to get through that dose, but we did it. It took about 90 minutes in total. But our relationship was still in tact.
In Floortime, we might want an outcome for our child, but this is not necessarily up to us and certainly not at the cost of the relationship or the child’s spirit. We want our children to feel they are important in the process, and not to feel what they desire or don’t want is ignored.
DIR/Floortime addresses patient-centered outcomes by following the child’s lead, allowing the child to define the agenda by pursuing what (s)he finds interesting, and by having the adult facilitate the child’s learning process. We want our children to become their own best advocates when they get older.
Being patient-centered is aligned with disability rights because people who have disabilities deserve to have a say in how they are cared for and/or supported. Every child deserves the respect and careful, supportive, individualized attention of a caregiver or therapist rather than a one-size-fits-all approach.
In addition, our children deserve to have support and care that uses patience rather than a scripted set of directions. Each child is on his/her own schedule and does not deserve to be rushed through learning and developing before (s)he is ready.
It is certainly easy to think that you can ignore the tantrum and plug through without cost because the child will forget about it. Ask one of the hundreds of adults with autism who are vocal today how they felt about their wishes being ignored as they grew up, before they could communicate in a way that was understood.
Our children do not have the timetable that others often have for them. Development happens. Yet, in Ontario parents have only one choice for a funded program and it is not DIR/Floortime or any other developmental approach.
Parents need the support and freedom to choose what type of evidence-based therapy works best with their own children, rather than having this dictated to them. Most parents cannot afford the evidence-based treatments that are not currently funded in Ontario.
Currently in Ontario and elsewhere, governments are unfortunately only concerned with academic studies that find evidence of behavioural change through short-term randomized control trials (RCTs). What about developing the capacity to think, relate and communicate?
We need to also look at the research and support for approaches such as DIR/Floortime that offer both these RCTs and essential factors like patient-centered outcomes, parent choice, and disability rights and well-being that affect our children throughout their lifetime.
These topics can be politically and culturally charged but are necessary to discuss. How have your experiences with the DIR model and Floortime affected your view of patient-centered outcomes, parent choice and/or disability rights and well-being? Please let us know below in the Comments section.
Until next week… here’s to affecting autism through playful interactions!
I love the description of how you came alongside and supported your son through the unpleasantness of taking his medication.
We, too, guide our children in this way. And it’s made a very difficult situation better -my son was diagnosed with cancer this spring. He’s had to get used to many uncomfortable procedures, and yet with our support, he’s tolerated far more than I ever thought he could, with courage and trust.
The hospital staff commented this morning how amazing he is with transitions – and told me about all the accommodations usually needed for kids with autism, but that our son doesn’t need.
He knows he is heard, and that we will make sure to do the things that help him.
I’m so proud of him, and so glad we chose to parent him in this way.
Thank you for your heart-wrenching comment, Deborah. Our hearts go out to you and your family. It sounds like having the tools offered by DIR/Floortime have at least left you with one less headache and allowed your relationship with your son to thrive, despite the challenges of medical procedures. Anything to make those go more smoothly, eh? I’m sure many parents can relate and we thank you for sharing your story with the readers here.