Continuing on with the theme of parent support, this week’s podcast is part one of a two-part review of my conference presentation for the Interdisciplinary Council on Development and Learning (ICDL) from this month. Retired special educator and DIR Expert Training Leader, Jackie Bartell, has joined me to discuss my revelations from being a Floortime parent for 8 years now. We will cover the first five revelations this week, and continue with the next five next week. Jackie has worked with and supported many families over the years, so I was eager for her thoughts about my revelations.

My Biggest Revelations from being a Floortime Parent: Part 1

by Affect Autism | affectautism.com

Before we delve in to the revelations, Jackie brought up an important point. These revelations are not sequential. They are a process. We are all in a process on a different time frame. In fact, they are just the first ten that came to me and I didn’t necessarily order them in the order I went through them. With that being said, let’s get to the first one.

Every one of us is on a journey, and we have to allow ourselves the space and time to be on the journey in the time that it takes, and to work on different parts of it as it seems to fit inside the moment that we’re living in.

Jackie Bartell

See the full presentation from the ICDL 2020 Conference by becoming a Member here

Revelation #1: Accept reality

When you are pregnant, you don’t plan to have a child who will require extra support or who has the label of having a disability so it can be quite a shock for parents entering the world of the unknown. How will I support them? What will happen to them? There’s a lot of grief around this experience for parents, which I discussed with psychologist Robert Naseef. In the first few years after my son’s hospitalization at age 28 months, I was living in chaos only focusing on getting back what my son lost and ‘catching him up’ to other kids his age. I was focused on getting his supports and therapies in place so he could eventually enter school with his peers. 

Jackie pointed out that indeed, when my son was in the hospital I was not thinking, “I have to accept reality.” This came much later. And Jackie suspects that I put it at number one because it is the hardest one to do, and it’s constantly revisited. All parents are having this experience and it’s ok to talk about it and wonder about it. But one day it hit me that thinking things like, “If only I had done ____ differently…” is pointless and silly. I didn’t. There’s nothing I can do to go back and time and change anything, so why even focus on hypotheticals? It just keeps you from accepting reality.

Instead, we need to look at the child we have right in front of us because they need us! Whatever grief we feel is ours and ours alone, not the child’s, as Dr. Naseef pointed out from this self-advocate, Jim Sinclair’s post. We have to get over that grief and sadness. There is no holy grail. We tend to want to make the grief go away immediately so we’ll look for some solution that will solve all of the reality to go back to what we expected, but that doesn’t exist. Jackie adds that what we’re confronted with is the tremendous amount of fear that parents have when confronted with the unknown. The anecdote is hope. 

Jackie says that we cannot compare our grief to others’ grief. I confessed that I did that at the start. In the rehabilitation hospital, I felt guilty for feeling sad about what happened to my child because other kids in the wing with us were confined to wheelchairs, with feeding tubes, having seizures, or had been in terrible accidents while my son was running up and down the hallways. Who was I to feel sad when my child could run and those children couldn’t? I was comparing my grief to someone else’s but everyone is on their own path. We have to focus on the child we have, accept and love them and delight in who they are, as Jackie so nicely put. 

Revelation #2: Take action over seeking explanations

You can ruminate over why things turned out how they are and feel down. Why did this happen to my family? What did I do wrong that may have caused this? I spent a long time ruminating after my son’s brain inflammation and hospitalization and feeling really sad and sorry for myself. Jackie says ruminating helps us avoid accepting our children as they are. We might do that for our own emotional safety. It’s ok, but be aware that it’s part of the process. 

If you need to talk to someone to process and get through your sadness, do it. Allow yourself to go through it. Explanations don’t matter. Instead we can focus on what we can control right now, and going forward. This means taking things one step at a time, one day at a time. Like Dr. Robert Naseef said, all children need energetic parents. Any challenge that comes up can be an opportunity to get to know your child better and figure out a solution together.

Revelation #3: Stop seeing experts as ‘God’

Once you begin to take action after a diagnosis, the onslaught of therapies start and sometimes parents think that since they don’t know anything about it, the expert knows it all. The thing is that you–as the parent–are the expert on your child. You have to trust your gut and instincts if something a therapist tells you to do doesn’t feel right nor sit well with you. Look to your child: are they happy? I gave the example of therapists having us purchase a desk with a seatbelt for my son to sit at so he would stay seated during a therapy session.

It didn’t feel right to me to force my child who needed to move to sit and squirm uncomfortably at a desk, strapped in, for what? Every therapist I asked told me the purpose was to make him ‘school ready’. School ready? He was two years old! Jackie firmly added that school will be ready for your child! Your child does not need to be ready for school. Plus, practicing sitting for school when you’re five is not an appropriate activity for a two-year-old. We don’t have these expectations for neurotypical children, Jackie offers. It’s compliance-driven and not connection-driven.

In my podcast about parent support groups, Bridget Palmer talked about finding therapists who are flexible and who will listen to your concerns rather than telling you what you should do. In my podcast with Eunice Lee on supporting parents in DIR/Floortime, she nicely describes how she meets parents where they are at as a Floortime practitioner, working with the family towards their vision. Jackie adds that we need to sometimes put ourselves in our child’s shoes and ask what it would feel like if someone were to ask us to sit at a desk with a seatbelt on. We want to listen to our children so they can eventually advocate for themselves as the expert on themselves. Until then, we are their best advocate.

Revelation #4: Use predictable structures and routines over structured therapy

I first got this idea from the Canadian developmental clinical psychologist, Gordon Neufeld, who talked about how culture used to take care of important structures for the village to raise a child. He saw this firsthand on his sabbaticals in France and in Southeast Asia where he stayed in small villages that had very structured rituals around meal times, holidays, parades, etc. It was natural for children to follow instruction from other adults because they were familiar with them versus here where we live segregated lives and drop young children off at daycares to follow instruction from strangers. 

These predictable routines that family cultures offer can help prevent catastrophic emotional reactions in our children who tend to be so anxious about what’s happening next. This is where having daily structures and routines in place will help our child’s regulation. Jackie and I discussed this a bit in our past podcasts about behavioural challenges at home and at school, as well as the in the one about the use of visual prompts and fostering independence. If our children have sensory processing differences, they aren’t reading the cues that neurotypical children are to predict what’s coming next.

As parents, Jackie says, sometimes we are so used to the chaos that we find ways to just ‘make it through’ the chaos and feel as though we are surviving. But imposing a structure can really support a child’s regulation. And this is very different from imposing a structured therapy on the child. Structured therapy is about instruction, compliance, and teaching and you cannot instruct or force development. The developmental process unfolds with appropriate support. Like Maude Le Roux said in a previous podcast, “If parents keep with the behavioural model, they just find they have to do the same thing over and over because it doesn’t have meaning for the child.”

In the last podcast with psychologist Gil Tippy, we discussed how strategies don’t promote growth. Strategies are things you use to get through the dentist or doctor’s appointment. Strategies are not going to teach someone to develop and grow. Jackie adds that you cannot teach attention. It comes with experience. You similarly cannot teach sitting still. Relationship supports someone’s desire to sit at a table.

Revelation #5: Floortime is a process, not a goal

We can focus only on the present and familiarize ourselves with different Floortime practices bit-by-bit, as we slowly assimilate them into our routine. I have been writing this blog for five years and have learned and applied bits of knowledge with each new post. One cannot expect to go to the Start Here link and apply it immediately. Even Mary Beth Stark, who has been a Floortime practitioner for decades shared at the ICDL conference that she was enthralled with Reciprocity for a time, then it was the fourth Functional Emotional Developmental Capacity, and lately it’s been Prelinguistics.

There is no rush in Floortime. It’s a process. Jackie and I did a podcast on being versus doing–a concept that psychologist Daniel Siegel (author of the Whole Brain Child with Tina Payne Bryson) talks about when he says being in the moment is about accepting reality. We are driven to think about what’s coming, Jackie says, but it’s about staying in the present moment to allow the process to unfold. Development is an individual process. When we’re parenting children with developmental differences, we have to be even more respectful of this process, Jackie adds.

My 'R' with Dr. Stanley Greenspan...

In my conference presentation, I spent some time discussing how my ‘R‘ with Dr. Stanley Greenspan began when I learned about Floortime. First, I saw this video by chance on the news on the television back in 2012, and then I found this video online after reading the book Engaging Autism. I then began to delve into courses at ICDL and discovered Dr. Stanley Greenspan’s old web radio shows. As I said at the conference, there’s nothing like going back to the original source and every time I hear Dr. Greenspan speak, there are powerful take-aways. I highly recommend them!

I hope you enjoyed the discussion around these five revelations from parenting since a diagnosis. I thank the Interdisciplinary Council on Development and Learning (ICDL) for the opportunity to speak at the conference and Jackie Bartell for joining me to reflect on them and would love your feedback. Please feel free to comment, share experiences, or ask questions in the Comments section below and if you would consider sharing this post on Facebook or Twitter, that would be great! Thank you. Stay tuned for the second half of this discussion next week!

Until next time… here’s to affecting autism through playful interactions!

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