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!

Monday, March 4, 2024

The next afternoon parent support meeting is Monday, March 4, 2024 at 1:00 PM Eastern where we will have guest DIR Expert, Speech Therapist Bridget Palmer.

Thursday, February 29, 2024

There were 8 participants this evening.

A parent’s child had an evaluation after three years and the child improved so much and they might not have her diagnosis on the child’s school record when the child starts Kindergarten, even though the child had autistic diagnoses multiple times. They wondered how the child progressed so much without having had ABA. Another parent said the neurodevelopmental diagnosis is different from a school diagnosis. If they don’t have their autism diagnosis with the school district, the child would lose their IEP, since the child is not behind their peers enough to require extra support. They suggested the parent talk to an advocate because the changing of status is a very common issue and advocates tend to know how it works in their local areas.

A parent new to the group shared their story about learning so much from their autistic child and their journey together. The parent found Floortime from an Occupational Therapist who also had an autistic child. The OT said it will be fine… let me tell you about your child’s vestibular system which opened the parent’s eyes. The parent started taking ICDL classes and interoception classes from Kelly Mahler, started modelling AAC (vs prompting) with the child since the child was age 2 and learned sign language. The parent says they tried to avoid the trauma, but mistakes happened, and they had to unlearn bad habits and are always open to learning more. Now the parent tries to increase parent education for others. Our autistic kids have brain/nervous system differences and we can support them with education and understanding the WHY behind everything. Feeding therapy that was behaviourally-based was hardest for them and was a terrible experience; the sensory-based approach was better.

Speaking of AAC, a parent shared that there is an NWACS meet-up on Sunday at this link. A parent in another area of the United States would love to find a great resource like NWACS in their area. The parent suggested contacting Not an Autism Mom blogger.

A parent is really considering homeschooling for their child after having no luck with the school board. They found a good site to help children read. The parent also found a great homeschooling book called The Call for Wild and Free: Reclaiming wonder in your child’s education. The fighting part is so hard. The school administration was so rigid. The teachers seemed fine, but it was so stressful. It seems easier to homeschool, even though the parent is not cut out for homeschooling and loves their job. The parent’s working life is completely paused. Even if you have the perfect IEP, how do you know if it’s being implemented? You’ll never find out. It’s very discouraging.

Another parent went through the school board to make sure the school/teachers had training that parent wanted, which was child-led, to support their child and suggested making sure that parents get these things written in the child’s IEP. If the school staff doesn’t know better, you have to teach them. They had their school’s speech therapist listen to a course from Learn Play Thrive.

A parent just found out that multiple students in their child’s class are sharing the child’s device since their child is the only one so far who’d been officially assigned one. Another parent suggested advocating for the other kids by talking about the effect on their own child when others use their child’s device. The child needs to be able to use the device, so clearly the class needs an additional device. It’s about protecting the child’s access to the child’s device. The child might not even realize it’s their device, thinking that it’s the school’s device, which is also not fair to the child.

Monday, February 26, 2024

There were 17 participants today.

A parent’s minimally speaking child was kicked out of school last week. They found a private school that was supposed to be neurodiversity-affirming, but it was not. In public school, you can’t bring your own aids. It’s a constant struggle. They are scrambling. If they have to, they will homeschool. Their child loves the interaction with peers, so they prefer not to homeschool. They are grateful they at least got a good six months out of the school.

Another family’s child has started a new medication to help with aggressive outbursts and the parent feels like the child is now being who they really are. The child’s condition is associated with mood disorders so medication was recommended, but the parents were hesitant. However, they are pleased that so far it seems to be working well. They also found a new short-term program for their child to work on skills and it’s being delivered by an autistic adult. Like Dr. Feder said in our medication podcasts, all medications come with risks and benefits and everything is always individualized to each patient. It’s also trial and error in many cases to see what works best and at what dose.

We talked about how DIR/Floortime does not solve everything, and sometimes medication can be necessary. I pointed out, though, that DIR is a way of interacting with each other and even when our children have behavioural services at school or with others, we can be the safe person in their life. It’s an approach to increase circles of communication that will help us cope and have resilience going forward.

A parent wondered about stomach issues in autistic children and wondered why doctors don’t screen for stomach issues instead of brushing them off as “just going with autism“. It’s so prevalent, it seems that doctors would try to figure out what is going on in the stomach, including checking vitamin levels. I pointed out that it’s not easy to figure out digestive issues–aside from serious medical causes like Celiac disease–and you have to do an elimination diet to figure out if things irritate your digestive system. Another parent said that they thought it was diet, but in retrospect, think that it was actually anxiety that they felt in their stomach. Once they treated the anxiety, the complaints about stomach pain disappeared. There’s a lot of misinformation out there trying to solve problems, so it’s important to be aware of scams promising results.

Another parent is frustrated that they just don’t give a list of co-occurrences of autism with the diagnosis to make us aware of other things going on. Another parent said it’s so hard to do an elimination diet when we’re in the thick of things, and especially, I added, when our kids can be such picky eaters. Another added that autism just seems to be the ‘junk drawer’ of diagnoses that everything gets thrown into. Autism seems to be the least helpful reason for some of their child’s issues. The co-occurrences seem to explain them more, which can be diet-related.

A parent’s child keeps taking off their socks and shoes at home, school, and on the playground and the school has rules around safety for the feet. The parent would like to find some kind of different shoes that can provide more sensory input. Other parents shared their experiences with different types of minimalist shoes and how their kids had similar experiences. I suggested a sensory integration Occupational Therapist might be able to figure out how to help the child. I provided a few podcasts about sensory issues:

A parent wondered how to figure out what developmental capacity their child is at? I provided these resources to look at the FEDCs including the Basic Chart that can help you figure it out. We also talked about how the capacities are always fluctuating depending on the environment.

A parent wondered about developmental regressions. I talked about the podcast that goes through developmental growth spurts and how our kids can seem to lose some capacities while their brain’s resources are figuring out the new skills, and then we’ll see a developmental leap. Another parent wondered if we should use a different word than regressions because they still have the skills, but are just temporarily not using them.

A parent wondered about Hanen’s More Than Words program. Those who had experience with it described some of the playful games in the book and how it is used to promote communication. It uses similar principles to Floortime. We talked about using anticipation, playful obstruction, and shared problem solving versus holding back something the child desires until they say something, which is cruel.

A parent’s child seems dysregulated by the parent’s use of affect, such as saying, “Whoa! Oh!” We talked about how you can change your affect to match what the child seems to respond best to. I shared this podcast with Dr. Stuart Shanker in which he described Dr. Stanley Greenspan (DIR founder) as a ‘baby whisperer’ and in it at the 27-minute mark, he described the affect diathesis hypothesis–what the entire DIR model is based on–in layman’s terms. Starting at the 3 min mark until about 11 min, he gives such a great explanation of what Greenspan’s idea was for regulation, and gave a powerful story at the 17:55 min mark to 22min.

A parent’s child is reacting strongly to certain words like “house” or “upstairs” and we speculated that the child has associated a negative experience with these words. Perhaps one day it was time to go to bed “upstairs” and that day the child had a bad experience not wanting to go to bed. I also suggested the Gestalt Language Processing podcast where children learn language in chunks.

A parent said there are no Occupational Therapy services where they are in their country and I pointed out the podcasts I did that provide examples of activities you can do at home:

Here are updates I shared:

 

 

  • Please provide your input! (Even though it says the input period has closed, the form is still there and you can still input comments.) Please provide “comments to assist the IACC in identifying priorities related to physical and mental health conditions, and other related conditions, that commonly co-occur with autism. The IACC is requesting public comments on the impact of these co-occurring conditions, as well as research, services, and policy needs to that may be helpful to consider in addressing issues related to these conditions.” From the Autistic Self Advocacy Network (ASAN): The IACC makes recommendations about where federal funds for autism research should go and what subjects should be prioritized. The IACC meets several times each year to discuss where these funds should go and how much money different research subjects should get. Research priorities should reflect what the autistic community needs — and before each IACC meeting, we have the opportunity to tell the government what research should be prioritized, and where the gaps in funding are.

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