Notes from ICDL online parent support drop-in

• Everything said is confidential and we ask that there are no recordings;
• This group is to share with and support fellow caregivers;
• Everyone is respectful of everyone’s experience even if we disagree;
• 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.
• If anything is said that offends anyone, I would like you to email me about it right away so I can reflect on the situation and learn from it and take any necessary action;
• Feel free to send feedback, suggestions, etc. to me anytime

Here are the usual resources to check out:

• Affect Autism Resources page
• the Start Here link
• New We Chose Play Floortime series of my family’s experience
• Take advantage of ICDL’s DIR Home Program 
• Dr. Gil Tippy’s For on the Floor videos

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

Monday, April 22, 2024

The next afternoon parent support meeting is Monday, April 22, 2024 at 1:00 PM Eastern.

Monday, April 15, 2024

DIR Expert and Speech-Language Pathologist, Katie Shepherd led this session and the following topics were covered: FEDCs 1-3, AAC use, FEDCs 4-6, GLP, does an SLP ever need to focus strictly on language vs co-reg and engagement?, acknowledging ALL communication, stretching circles of communication, capacities leading to my child talking, thinking about individual differences/sensory issues impacting engagement, children who need movement. 

DIR Expert and Infant and Mental Health Specialist, Colette Ryan led this session.

There were 7 parents in attendance.

I shared with the group some nuggets of wisdom I have learned from sitting in on DIR 203 again (the Advanced certificate course for DIR/Floortime). Mike Fields, one of the instructors, shared that he wants to know when he meets with parents, “How is your child experiencing the world and are you curious about it?” It’s about our expectations, and being curious.

Mike had also talked about if a child is melting down, thinking about how we determine if it’s a problem of praxis, which would be, “I only have 1 idea for solving this problem. It’s worked before, so I’ll do it again.” (i.e., melt down). This is different from a child who is having a tantrum on purpose to get the parent to respond. Mike also pointed out that when you don’t know what to expect, that is also praxis, so we want to help our children be able to flesh out a pattern that they can make sense of. What we do in the moment makes a difference. A parent pointed out that if the child is doing something on purpose as opposed to it being praxis-related, it would be a tantrum rather than a meltdown.

I gave another example to illustrate Mike’s point. If you always give your child mac n’ cheese to eat, but one day they don’t have your usual brand at the store, so you buy a different brand, your child might meltdown. To you, it’s still mac ‘n’ cheese, but to them it’s something completely different because the box is not the same. They only have one idea for what mac ‘n’ cheese is. Eventually, they can experience that there are more than one types of mac ‘n’ cheese. They are viewing it as a completely novel object, a parent added.

Dr. Ira Glovinsky had shared a story in a recent podcast about a child seeing a dog and the parent labelling it ‘dog’. The next day, they see a cat and say ‘dog’, and the parent says that no, it’s a cat. Children are putting together concepts with experiences.

Another parent shared that at their child’s school, the psychologist said that their child no longer qualifies for an autism diagnosis anymore, thus the child does not need an IEP. They do acknowledge that the child has a speech issue because there is a processing delay when someone speaks to the child, and the child has social-emotional, and eye-hand co-ordination challenges.

I suggested that the parent suggest to them to look up and research autism in females! You don’t suddenly lose autism if you are autistic. The parent is wondering how to handle it. They have nobody professional attending the meetings with them. We talked about looking up advocacy support in their state to have someone accompany them to the meeting.

The school also suggested that the parent gives the child whatever they want at home, so they think the child is acting that way at school–expecting to get whatever they want. I suggested saying thank you for their opinion, but that they are not ‘spoiling’ the child at home. They are empowering the child’s early developmental capacities and want the child to have autonomy. It is not a behavioural issue.

Another parent shared that there is a place called Advocating 4 Kids in Richmond, VA (Cheryl Poe) and they can attend over Zoom.

I shared that Kim Kredich will be our guest at parent support in May and that I’ll be doing a podcast with her. She was a keynote speaker at the ICDL conference in NYC and has been a parent advocate in public schools for 20 years. I emailed her after our meeting and she said this: “This is all good news because obviously she has made such huge improvement that I think the school is saying she doesn’t qualify for an IEP under the category of Autism. That just means that it doesn’t impact her education to the point where she qualifies under that category or even qualifies for an IEP at all anymore. If she just needs accommodations and even some services like OT at school, you can ask for a 504 plan and see what they say. I hope this information helps!“

A parent shared that their child has a new behaviour of putting hands in their mouth and sucking and the parent is worried about the child getting sick. The parent wonders if an Occupational Therapist (OT) can support it. I shared that my child does the same thing. I wondered if we can even stop these phases of behaviour that our children go through. In my son, I’ve seen various behaviours start and disappear months later.

Another parent got information from the school that their child was hitting kids at school. They remove the child from the group and say, “Safe hands“. The child is not aggressive and not aggressive at all at home. The teachers don’t seem to understand why the child did what they did, including standing on top of the table. I suggested being curious about why and ask them what happened right before. The child did this for a reason. If hitting was the only thing the child knew how to do, it’s communication. The child is very interested in hair, the parent said, so the teachers also said that the child felt then pulled another child’s hair. They had given the child a Rapunzel doll to play with the hair if it’s a sensory need.

I repeated that the parent can say that the child clearly has a sensory need so they have to look at the why behind the behaviour. The child won’t be able to control those impulses yet. The child has a disability and will need accommodations. You can’t hold up the child to the same standards of the other children. It’s autism acceptance month. The parent pointed out that the other kids are also autistic. I suggested having a talk about autism during this autism acceptance month and talk about what each child do and what other kids can do if the child comes up to their hair. Maybe the child can hold up their hand to say ‘stop’.

Having an aggressive moment doesn’t mean that the child is aggressive, another parent added. This parent suggested to change the pattern immediately. If the child again goes up to the child to touch their hair, it will lead to the same scenario again. Break that pattern that the child has learned to do. If you catch it before it becomes a repeated pattern, you can change the pattern. The parent also added that we can’t take on everything as a parent. You can’t do everything. This should be up to the teachers. We need to give ourselves a break, too.

I gave the example of a friend of my son’s calling me the wrong pronunciation of my name. I playfully changed the pronunciation of the child’s name and called the child by that wrong pronunciation and the child protested. I said Oh, ok. Well, my son picked it up and is now calling me the wrong pronunciation of my name and it became a pattern. In addition, a child at my son’s school bites and scratches his hand to see it turn red, so my son has started copying that and then asking me for moisturizer. It has now become a pattern! Every night he scratches his arm, then asks for moisturizer.

I shared that at a bowling playdate, an autistic friend pushed a child at bowling who was taking their turn and it was clear that it was communication–saying “It’s MY turn, not yours!” Another parent shared that they wouldn’t even qualify hitting or pushing as aggression, it’s just a maladaptive form of communication. Another parent added that if neurotypical children did this, everyone tends to let it go, but because our children have a diagnosis, so much attention gets put on our children’s behaviour.

I reminded everyone that Dave Nelson said–as our parent support guest recently–that he prefers the word ‘reactivity’ to ‘aggression’ since there is typically no ill intent behind the behaviour. I suggested changing the wording in conversation with teachers. If the teacher says that your child was aggressive, you can say, “Oh, I understand. They were reactive. I wonder what they were reacting to?“

Another parent keeps watching the podcast I did with Mili Cordero and her daughter, Joann Fleckenstein, both OTs. Dr. Greenspan would say, “Who’s doing the thinking?” and that has stuck with this parent. We have ‘libraries’ in our head and add to them as we get more experiences. In a video about Artificial Intelligence, the parent say them say that we aren’t actually too creative. We just synthesize things we’ve already seen in a different way, from the libraries in our head, the parent is thinking. Another video was about a drawing tutorial the parent’s child has watched. The child combined that with what they knew and is now drawing. Until you master the most basic motor, you can’t go to complex social interactions. We need to put the building blocks in place.

Another parent took a course a few weeks ago about neurodevelopment through movement and talked about how the building blocks form the base for development. The parent did a few of the movements with their child and noticed improvements in the child’s school work. It’s minor changes, but so many of them make a big impact. Other parents asked for this resource, but it’s a private localized school resource, buy they use this method, based on the Anat Baniel method. I shared that there are many of these types of resources and I think they are all similar. There’s Brain Gym, Anat Baniel Method, Sonia Story, and others. Also, OT Maude Le Roux had shared that they include primitive reflexes work with their OT sessions. You can’t really wait for all primitive reflexes to be integrated before doing anything else, or you’ll be waiting around forever. I also pointed out that in the ViSPA podcast, there is a free 150-page booklet you can download and these movements are also working on all the same movements that are so helpful for development. A parent tried the Qigong method and likes it. I shared that this method does have research behind it.

COMING in MAY! FREE parent DIR 101: An Introduction to DIR and DIRFloortime!