Notes from ICDL online parent support drop-in

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;
• 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 or other relevant guest 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 HERE.
• 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
• 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, May 6, 2024

The next afternoon parent support meeting is Monday, May 6, 2024 at 1:00 PM Eastern where Kim Kredich will be our guest to answer questions about Advocating for rightful inclusion in school, so please listen to that podcast before attending this session to not waste time and have your questions ready! THIS SESSION WILL BE 90 MINUTES LONG.

Thursday, May 2, 2024

The next EVENING parent support meeting is Thursday, May 2, 2024 at 9:00 PM Eastern.

Monday, April 29, 2024

There were 13 participants today.

I reminded everyone about our evening parent support meeting this coming Thursday evening.

A parent will be attending a talk by Steve Silberman about what has changed since his book Neurotribes came out.

A parent asked for tips for going on a long plane ride. Their family will be on a 16-hour flight and they are wondering how to occupy their autistic child. We talked about doing social stories and watching videos in advance about plane travel, even on her favourite shows such as the episode where Peppa Pig’s family goes on a plane, etc. We talked about medication or anti-motion-sickness medicine that can help the child sleep from the doctor. Another parent suggested lots of snacks and preferred activites and books. Another suggested fun novel items the child would like.

Another parent suggested the sunflower lanyard that alerts staff that you have a child with a disability and can provide extra assistance. We talked about calling the airline in advance to let them know that you have a child with a disability. Another parent suggested pretending you are doing a flight and sit them in a chair and put on the seatbelt and practice take off and landing, in play to ‘practice’. A parent says to make sure that they are awake for take off and landing so their ears don’t pop. Another parent said they like to board last and book seats near the front of the plane.

Another parent said they bring noise cancelling headphones with the child’s favourite music. Another parent suggested bringing changes of clothes, especially if the child is not yet toilet trained because the bathroom is a very intense sensory experience. We also talked about staying as calm as you can as a parent so the child doesn’t pick up on your anxiety. Be playful and make everything silly and fun so it’s more relaxing.

Another parent asked if anyone knows how to get the ‘intellectual disability’ label off of their profile in school. The child is non speaking but does not meet the profile of less than first percentile, according to the parent. I mentioned that this is the perfect question for Kim Kredich next week! We wondered how that disability is even measured and the parent says there was no official assessment. Another parent’s child was also labelled without testing. Another parent suggested getting a neurologist to write a letter and the parent said they recently started speech-language therapy and maybe they will write a letter. I referred everyone to the latest podcast where Kim gave tips for meeting with the school.

Another parent updated us that things are going well with their child who might return to school after being at home for a few years. They are hoping that the accommodations will be provided that they require. Again, I encouraged the parent to attend next week to ask our guest, Kim Kredich! The parent is looking forward to having some more time to themself if the child can finally return to school.

A parent asked about ILS listening system. I shared our experience with Tomatis and how it has bone conduction unlike some other listening systems. I referred the parent to my podcast with the Occupational Therapist where we discussed this and the podcast about Developmental Growth Spurts that can happen about six to eight weeks after a round of listening therapy.

Another parent asked about massage to help with regulation. We talked about deep massage and Qi Gong massage, depending on the child’s preferences. There was a presentation about this at the ICDL DIR conference last fall. Another parent offered this podcast link.

A parent’s child is now experimenting with hitting. We talked about the cause and effect and how the child is now interested in the reactions of others. They might be looking for emotional interaction, but don’t quite know how to yet. We talked about accepting that this might happen for awhile, but how you do have to set limits, and this depends on your child’s developmental capacities. Dr. Greenspan did a radio show about this. Here is the transcript and here is the audio version of it.

Monday, April 22, 2024

There were 21 participants in attendance.

We started off talking about how the last 2 weeks went with different hosts. I shared how much I have learned hearing Floortime perspectives from different people I podcast with. Hearing people talk about DIR from slightly different perspectives really solidifies my learning. People shared that they enjoyed having the DIR experts very much.

A parent shared that they’ve been really enjoying their time with their child who is becoming more confident and coming into their personality. The child has been having fun and being goofy with their teacher in gymnastics. Another parent had talked about this in the session with Colette two weeks ago, and this parent has had the same experience. I shared that I have also been enjoying time with my son the more I’ve been able to structure our time and set limits so he knows more what to expect. It’s been so helpful for him to know what’s going to happen and has helped me so much, as well.

A parent mentioned their child is “Level 1 Autism” and another caregiver asked what that meant. We talked about the Diagnostic and Statistical Manual (DSM) that lists characteristics and/or behaviours of every diagnosis including autism, ADHD, bi-polar, anxiety, OCD, etc. etc. and that it is very much a ‘medical model’ that is deficit-based. They are currently at the 5th edition so it’s called DSM-5 and in one of the revisions they started including sensory challenges which a lot of people have asked for, for years. ‘Level 1’ is so-called ‘higher functioning’ whereas ‘Level 3’ is considered more ‘lower functioning’ but we talked about the podcast I did with the autistic advocate, Kieran Rose, about how damaging functioning labels are.

We talked about how some people say this is just semantics, but language is important. If you hear all your life that you are ‘low functioning’, that is brutal to hear. It is much more empowering to say that you have higher support needs, meaning that with the appropriate support and accommodations, you can function! It also changes the perspective of parents and teachers and everyone who looks at the autistic person and makes assumptions, based on their so-called ‘level of functioning’. Another parent brought up that they struggle with this because their child would be considered one with high support needs, and they prefer this terminology. I brought up Dr. Robert Naseef’s blog post to not divide the spectrum. We talked about the concept of disability and support needs.

Michele Abraham-Montgomery was in attendance today and I asked her to share the link to her presentation from her ICDL New York City conference.

Another parent shared that the movie, Spellers, is now available online. We talked about how it is controversial due to the history of Facilitated Communication and a bunch of the issues around it. We talked about the motor issues in helping spellers learn how to spell, using gross motor movements, versus fine motor movements–such as keyboarding, which comes later. We talked about how we don’t ride a bike the first time we ride. We hold the bike for the child at first, then they use training wheels.

A parent asked what’s the motivation to choose ‘spelling’ over AAC because it seems more universal to be more understandable to others, which spelling is not as it is more tedious. I explained that I know nothing about it, but my understanding from the very little I’ve heard from others, not being an SLP or a clinican, that it has to do with individualizing what each child can do and prefers to do best.

Another parent asked what the prerequisites are for spelling and if you have to know phonics? I expressed that we are thinking about it in the way neurotypical way and I don’t know if that’s how spellers learn, but again, that I have no clue. It has to do with learning motor plans, for sure. Another parent said that it seems quite behavioural to them and wondered how it worked with DIR because they saw a video of a child sitting and not paying attention and the adult trying to coerce the child to participate. I pointed out that every child is different and for sure we have to take the responsibility to find out what our child is most comfortable with. You don’t have to force anyone to do it. There is a learning curve, but as Cass and I discussed in our podcast, the parents model alternative forms of communicating first. Maybe you do that for months and see if your child is looking curious. Cass did this with low and high tech AAC.

Self-advocates all encourage parents to get their children using AAC as young as possible. I shared that this is easy to say, but I cannot relate as my son is very verbal, despite having many other challenges, which include communication in general. Everything is individualized. That’s the benefit and beauty of DIR. It really values individual differences and the parents know their children best. It always depends on your child’s unique profile what is best for your child.

A parent is concerned because their young child’s ear was pinched on the school bus by another child and the parent worries that their non speaking child is being bullied because they can’t speak.

A parent asked about homeschooling as the school is not meeting their child’s needs. Perhaps the option of a half-day with socializing then a half-day with an alternative school or homeschooling. They want their child to see other kids for socializing. Parents offered suggestions such as joining autism organized events by their local organization and talk with other parents. There are so many resources out there such as The Inspired Treehouse, and the ViSPA podcast I did. You can arrange playdates. All of the social events and motor activities will encourage interactions and these interactions build on each other. There are homeschooling learning pods on Facebook and outdoor learning resources.

Some Toronto-area parents provided a list of resources in the Toronto area here and also here. I also included a link to this PDF for Toronto services.

Another parent shared that their child was attending a private school part-time and they managed to engage the child. They stopped going and they heard that the children have asked for the child and said, “Why can’t we take care of them?” and they cheer for the child when the child is successful and it was wonderful to hear. Yay!

I shared that my upcoming podcast is all about advocating for your child in school with Kim Kredich, who will be our guest at parent support the first Monday in May (in two weeks). I encouraged everyone–as homework–to listen to it and prepare questions for Kim! She has agreed to stay for 90 minutes on Monday, May 2nd. Come having watched her podcast, please, so we don’t waste her precious time as her family is still grieving the loss of their autistic son, moving forward with his legacy. The podcast will be on affectautism.com this weekend under the Blogs/Podcasts link.

Don’t forget to register for the upcoming FREE course for parents! Also, IF I NEED HELP has a free giveaway for the month of April, Autism Awareness/Acceptance month!