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;
  • 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:

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

December 4, 2023

The next parent support meeting is Monday, December 4 at 1:00 PM Eastern with guest Clinical Psychologist Dr. Robert Naseef

November 27, 2023

There were 18 participants today.

A caregiver shared that they tried a ViSPA activity with a scooter, but it was not working. Next time, they will try to have the child’s sibling involved to see if that will work. Another parent shared that a sibling was key in making their attempts successful. The parent bought stickers and put them on the parent’s hands. The sibling did it first, then the child did it. The second time, the child wasn’t interested. The third time they tried, the parent photocopied character’s the child liked and it worked, and then the sibling hid the pictures around the house and they played that game for a long time! I suggested incorporating even more funny effects with the parents when they tap the character, etc. You can also add one element next time such as touching your head (or spinning around, or jumping) when they find each character. I cautioned not to challenge too much with too many differences at once. You can do each ‘new’ idea for a week or more.

Another parent said that they use a ‘starter’ version where the child sits on the parent’s lap who has air in their cheeks, then the child taps the parent’s cheek to let the air out and makes funny noises. The child really enjoys that. A parent shared that they played these cause-and-effect type games as well with their child, using the parent in the play.

Another parent shared that the activities are great and that they do one topic every day for 20-25 minutes! Their child was so excited! They stuck Peppa Pig stickers on the door. One of the stickers had a character licking ice cream, so the parent said to lick the ice cream and the child did. They did so many variations and made it more complex and the child had a ball! It made the parent feel that they had accomplished something and made them feel great! I said that sometimes as parents, we just need that first activity suggestion to spark some play with your child. I also suggested that you can add in more of an ‘occupational therapy’ component by getting your child to cross the midline (e.g., by touching one sticker on the right with the left hand, then a sticker on the left with the right hand, etc.). The parent said that they even used stairs so the child had to climb a few stairs to reach the sticker and said they do have access to monkey bars, and might try to use those in play next time, too.

I encouraged parents to come back next week with what they tried, and not to feel bad if they did not get a chance to try it yet. Hopefully some of the ideas today will spark some ideas in them. I love the idea of everybody with different aged children sharing what they tried, what worked, and what was challenging.

I shared the replay of the POND Family DAY 2023 from Toronto. I was surprised at the mentions of neurodiversity and how the goals of this genetic research is not to change autistics, but to help with their support needs. The language over the last 10 years has really changed a lot from medical model language. The video starts at 36:30. The first 2 presentations (Dr. Agnostou and Dr. Sherer) are really worth watching. They found some really interesting results that I found very interesting. They talked about the possibility of creating ways to medically treat children with neurodevelopmental differences to help support their needs. At 4:24:30, after the hour-long lunch break (which is just a screensaver with music on the recording), is a presentation about the mental health and family supports they used and it is a lot of DIR-type stuff!

I also heard this podcast for parents that I found very helpful about not having to believe everything you think which is helpful when we get anxious about our children and their futures, etc.

A parent asked if they can still watch the ICDL conference recordings from the live presentations, and I said yes, that you can access them until December 10th, 2023.

A parent put some words on a chalkboard and their child started coming over to the board and tapping the words and saying the words to make requests such as pointing to “van, go, food” to go into the van to get food. I said that they are basically using low-tech AAC!

A parent is having trouble with their child’s aggression that seems to be worse since they had a surgery on their mouth. The started the ICDL’s DIR Home Program but wondered if there is anyone who specializes in aggression and asked about Dr. Ira Glovinsky. I also suggested consulting with self-advocate, Kieran Rose, who might say that one big consideration is the child’s ability to communicate. Another suggestion is Mike Fields, a LPC in Atlanta whom I did the aggression podcast with. I shared that it might be the child’s sense of safety, especially after the surgery. Another parent suggested the OT Butterfly who said that in the morning we get a flood of sympathetic arousal which is too much for some kids. OT Maude Le Roux recommends deep pressure massage first thing in the morning and before bed to help regulate. Many parents said that when their children are not feeling well, or starting to feel sick, they get aggressive. And sometimes we worry about these increases in behaviours and it might be a more ‘simple’ answer that this is a temporary period following a surgery. It could take a month or a few. The child looks up Supernanny videos showing children who were aggressive with their parents after this child is aggressive with the parents. The parent will discuss the videos with the child, saying things like, “Oh no, the parents are yelling at the child, but maybe the child just needs a hug or needs some help.” Another parent suggested that emotion bracelet we talked about a few weeks ago. Another parent said that mirroring helps with their child when the child gets aggressive.

A parent asked how to have virtual Floortime coaching sessions, so I directed them to ICDL’s DIR Home Program.

I mentioned my latest podcast which is about Autistic Masking with autistic self-advocate Kieran Rose and his co-author, Dr. Amy Pearson.

Our next session is next Monday, December 4th and, being the first day of the month, we will have a guest, psychologist Dr. Robert Naseef who co-facilitates the Father’s Support Group through Drexel University.

November 20, 2023

There were 18 participants today.

A parent’s child had surgery and it went really well. The child did not put up a fuss, and we think the child went into this so prepared and calm was due to the parent’s Floortime play around the upcoming surgery and allowing the child to watch numerous videos about surgery. Unfortunately, despite warnings to the staff about possible aggression post-surgery, the staff was not prepared and there was aggression as the child woke up scared with the pain and the anaesthesia, etc. The parent is relieved it is done and that there were no complications. The child is doing pretty well in the recovery and is requesting pain medication when needed.

Another parent is having a very hard time with coping. Their child is not making progress and they’ve had some new challenges. Sometimes these regressions and struggles and can last for months, and this worry can project into what you’re doing everyday. I wondered if this parent can focus on each day at a time and focusing on this moment and saying, “I don’t know how long this is going to last. I don’t know what we’re going to do, but I know we’ll be trying our best.” The parent worried about children who can’t make progress, for whatever reasons. We had a discussion again about not making assumptions about our children’s futures that give us so much pain and anguish. I shared the podcast I did with Dr. Kathy Platzman of Floortime Atlanta on Avoiding the Blame. Other parents also empathized and offered their thoughts. One parent keeps a daily journal to write down daily successes in order to focus on the positive and try to keep their spirits up. The parent would like to see examples of families with higher support needs whose children are adults now to see how they have coped and are coping.

Another parent shared the Tilt Parenting resources which also helped this parent really get to the point of acceptance of their child and understanding that our children do not develop typically, but they do develop. Having these resources help us realize we are not alone.

I shared this blurb from Adam Bornstein’s latest fitness newsletter because while he is talking about fitness goals/bodybuilding, it made me think of our parenting group:

Too many of us sit in isolation thinking because it’s our own health that we need to figure everything out on our own. While it is your responsibility to get better — it’s also your responsibility to surround yourself with people who make you better.

Your community doesn’t always need to have all the answers because that’s not what leads to change. Having a space to discuss, listen, and connect can create an environment where you feel more likely that your pursuits will become a reality. And when that happens, when your mindset shifts and you’re in an environment more designed to support you — even if you don’t have the perfect solution — you’ll find that you’re more likely to succeed. -AB

Resources that parents shared with us:

A parent shared that meeting families of children who use alternative means to communicate has really helped gain the perspective of their child’s possible future path. Also, this parent didn’t realize how much support they needed as a parent, with neurodivergences, and that this is ok. This parent needs regulation support for themself. They have self-regulation reminders around the house that gives them glimmers of joy. Self-care is regulation support for this parent.

A parent, who has been struggling a lot, had a win! They had a lovely few days of visits with family in a vacation home for day trips and their child was happy and interacting with their relatives, whose photos they matched to the people in real life, which helped their child feel safe. This parent empathized greatly with the earlier parent’s struggles as they also have been feeling for months that nothing was progressing and that it was all just stress, and how isolating and lonely that is.

A parent shared general thoughts about today that of course it’s ok to be prepared for the worst things but it can poison your ‘now’ and might stop you from giving opportunities for your child to develop. They try to focus on the positive things, and at the same time look for what might help. They say the quality of your life is dependent on your perception. They see the parent’s self-doubt but it’s overshadowed by the overwhelming love and devotion to their child.

Another parent also shared that it’s been challenging recently as their child has gone non speaking again for the last three months and having outbursts of screaming. The parent just broke down crying yesterday. They understand that they’re going through a hard time. It’s defeating, but to be able to reflect on it and cry is important. Sometimes it just pierces the heart, but having the reminders from this support meeting is very special. The entire journey is rocky and ebbs and flows.

Our next meeting is next Monday at 1:00pm where we will review the ViSPA podcast activities and how we did with the Magic Buttons activity!