Notes from ICDL online parent support drop-in

See the schedule for ICDL's Parent Support Meetings HERE

Disclaimers

Just a reminder about our parent support meeting:

  • Everything said is confidential and we ask that there are no recordings;
  • This group is to share with and support fellow caregivers;
  • The sessions are for caregivers only, but we will have a guest DIR Expert Training Leader with us the first Monday of each month to support us if anyone has questions or would like this additional support;
  • This is not a clinical treatment program. This is a parent-led support service. ICDL strongly encourages parents to also obtain professional clinical support from a DIRFloortime provider. You can search for providers HERE or access the DIR Home Program for virtual coaching.
  • Feel free to send feedback, suggestions, etc. to me anytime

Here are the usual resources to check out:

If you have any questions about the notes or suggestions for next time, feel free to email me!

June 12, 2023

The next meeting is Monday, June 12th at 1:00 PM Eastern 

June 5, 2023

Today’s DIR Expert guest was Occupational Therapist, Joann Fleckenstein. I shared that this coming weekend, I will be publishing the podcast I did with Joann and her colleague, Mike Fields, about praxis and that part 2 in two weeks will be a follow-up Q & A, part of which I’ll be recording during this support meeting (audio only). I shared the link to the podcast prematurely, but look back this weekend to see the accompanying blog post.

There were 20 participants in attendance today.

A parent asked about their child’s motor planning difficulties. What is a praxis issue, how can you improve it, and how can you measure progress? Can not doing something be a praxis issue or is it anxiety?

Joann said that motor planning is a piece of praxis when it involves motor skills, such as when we’re using praxis for a motor idea such as figuring out how to get from one place to another. Praxis develops with primitive reflexes as babies shift from moving as a reflex to moving intentionally, she continued. She said a clinician will take people back to motor skills to lay the neurological groundwork for praxis. It’s easier for everyone to see praxis when it’s motor. She added that not doing something or inaction can be a praxis issue. Praxis involves having an idea, making a plan, executing the plan, and getting feedback on if the plan worked. We can get stuck if the plan doesn’t work. Some kids will suffer in silence because they don’t know how to initiate how to do something they need to do.

Praxis is how we do everything that we haven’t practiced, Joann said. It’s everything novel and different, or not how you expect. Joann will start from a motor perspective and make it as complex as she can in order to support the wiring for social praxis. An individual will have a problem, but doesn’t know how to go about asking for help to solve it. Praxis is one of those Individual differences that runs all through development. It’s part of how we turn ideas around in our head, and is implemented in Executive Function. You can have a child who can run, jump, and climb, but if you take them to a new park or something changes, they can’t function when there’s a novel sequence. Many clients with dyspraxia are professional soccer players, gymnasts, and child actors, Joann shared. Child actors do beautifully, she said, when they have scripted lines to read. They can do step-by-step instructions, but can’t make their own instructions. It’s the ability to understand the sequencing of doing this before you do that.

Another parent asked if it is a praxis issue if your child grabs your hand to get something? The parent has also seen the child grab things himself. Joann says that this is early praxis where the child realizes he needs assistance. He knows what he wants and is using the parent’s hand as a tool. It might be that he saw the parent reach for the object before so he now knows that the parent can get it for him.

Does praxis affect speech, and if yes, how? Joann says yes, there is a diagnosis called apraxia of speech for children who struggle to co-ordinate the muscles of their mouth to say a word on command. For language, you can have challenges with your praxis of language. What that tends to look like is not being able to repair communication. Some clients use the exact same words and expect her to understand after she didn’t understand the first time. They can see she didn’t understand, but they’re unable to change the structure to make her understand. The kids she sees who have motor challenges with praxis will often also struggle with speech and language.

On that topic, I asked about our kids who ask the same questions over and over again and how when we had Speech Therapist, Bridget Palmer, as our guest, she said that Temple Grandin has said that she used to ask her mother the same question over and over because she loved hearing her mother’s response. Joann says that this is an anxiety response. There’s some great information on the link between dyspraxia and anxiety. It must be so frustrating for someone who struggles with praxis when something doesn’t go as planned because they can’t come up with a new idea, or a plan B. So there’s a lot of energy spent on making sure that everything is as predictable as possible. This could be related to praxis. It could also be wanting to connect with someone, but not knowing how to say something new, so they repeat the same thing again and again.

Joann says that sometimes she’ll miss praxis challenges in the first couple of sessions because a child will come in and play, but by the third session if they’re playing with the exact same things every time and not trying anything new, she’ll try to introduce something new and see the distress.

A parent asked for clarification about primitive reflex integration laying the groundwork for praxis. Joann says that it depends on the child and what they can tolerate. If they can’t tolerate some primitive reflex integration, she’ll try to integrate them in more practical activities. In terms of laying the groundwork, it’s about offering opportunities for the child to sit in ‘not knowing’ and trying to find another plan. Sit beside them in their discomfort while they struggle to find another way. We want to offer them the opportunity to think of another way.

Another parent asked if potty training can be a praxis issue. Joann says that initially, yes, it can be all new sequences and get your pelvic floor to relax, but if you’ve been practicing with the same toilet and same timing, it could be more to do with the pelvic floor and interoception. Anytime something is practiced, it’s not praxis. So for the essentials like getting dressed, going to the toilet, etc. we practice over and over, but for praxis we’ll use non essential skills to create opportunities to think.

Another parent asked if dyspraxia and Developmental Coordination Disorder (DCD) are the same. Joann says that to her understanding, they’re the same thing, and usually it depends on where you are in the world which term is used.

Another parent described how their child requests to play basketball downstairs at their apartment complex, but when they get there, he’ll just play with opening and closing the door. They’ll remind him that they came to play basketball but he’ll say no, and he just wants to play with the doors. They’ll say that they’re not playing with the doors, so what does he want to do. He says he wants to go back home. When they get back to the apartment, he requests to play basketball again. Joann responded that she wonders if ‘basketball’ to him means that he wants to play with the doors. The parents replied that he will see other kids playing basketball from the apartment window and requests to play, so he is making that connection. Joann replied that maybe it’s that he is getting stuck along the way when he’s distracted by the doors where he’s not able to get past the doors because he has to complete this ‘ritual’ type sequence of opening and closing the doors. This causes him to lose his energy and intention and has to return home to ‘reset’. Joann suggested one of them going downstairs first and opening the door first to see if he goes in without the distraction of having to open the door. She’s had other autistics tell her that they may have wanted to go to do something, but when they arrive, it’s not what they expected so they get stuck.

Another parent is curious to know more about apraxia of speech. Her son can say a few words and sometimes he says things clear as day, but then he can’t say it again. He uses sign language. How else can this parent work on it? Joann says this is a more specific speech question and suggests looking up a speech therapist who specializes in apraxia of speech. Some use a P.R.O.M.P.T. method that she’s seen be effective. Other ways to support your children is to lay the groundwork with the motor piece, which is the thinking groundwork such as the toy he wants to play with not being where it’s supposed to be and wondering how to find it.

Someone asked about helping adults with praxis and Joann said that yes, you can work on it, and gave an example to begin. She had a client whose father was struggling to not just teach the child how to do something and gave the child the hint. Joann realized that opportunity was missed so tried something different and saw the challenge again with both the child and the parent. We, as parents, have to be available for the challenge, Joann says, of sitting with the child in frustration and the discomfort of not knowing. If you’re not available, or in a rush, it’s not the time. When you do have the time and opportunity, then you sit with the child. You can give the child information and say, “How in the world are you going to make this work? There’s got to be a way!” without giving the child a solution. If the child gets really frustrated you can give the child an idea without giving the entire answer. If the child cannot handle it, you can move on to something else and work on it another day.

I shared that you can do little things each day to help your children develop this thinking muscle. You can put your child’s socks on their hands and wait to see if they do anything about it, or tell you it goes on their foot. You can put their pants on your head and see what they do. I shared that my son would grab them off my head and protest.

I shared how we listen to songs on his Spotify playlist on the way to school and one day I put up the lyrics to the song we were listening to and he lost it. He did not want to see the lyrics! He wanted to see the picture that goes with the song. I asked Joann what to do? She said that in that moment you can let it go and later, come back and say that you noticed they really did not like that and say that you wish you knew why. That’s dropping the seed of an idea, she says. She loves to sprinkle seeds and see what sprouts by saying things like, “Hmm, that’s interesting!” and walking away so they get a glimpse of what’s in her brain.

Joann says that her own praxis has improved in helping her child work on their own praxis. As we parent, we grow in our capacities and in our developmental skills. You can never go wrong sticking to the developmental path of the Functional Emotional Developmental Capacities (FEDCs). If the child is mostly playing at Capacity 3, then we deal with praxis at reciprocity. Can you roll this ball back and forth? Can you hide your body under a blanket? In adults, she says they’ll use a lot of compensatory strategies such as the therapist Casey Davis who has ways to keep yourself organized. Joann uses her lists to organize her weekend. If you can’t organize, you can get disorganized and anxious so she’ll create the lists together with adult clients. This will give them the bandwidth to then work on other things. So with adults, Joann will use a combination of compensatory strategies along with working on strengthening the capacities. For individuals who melt down, Joann will offer choices and eventually gradually reduce the support required. Praxis is the groundwork for Executive Function.