Thread by @thinkingautism

If you missed the recent webinar on Disability & Inclusion Strategies During #COVID19 for parents &/or children with disabilities, the full video & complete transcript is here:

thinkingautismguide.com/2020/04/disabi…

If you’d prefer to read the highlights here, this is the thread for you. 1/

First sincere thanks to @magicalbridge’s Jill Asher for creating the Disability & Inclusion Strategies webinar, & to panelists @AutisticEnough, @ForwardRolling, & Anne Cohen. We addressed some issues disabled & #autistic people & their families are struggling with right now. 2/

We wanted to acknowledge that we are all stressed right now—and that's okay. Although our participants & their children represent a range of disability experiences, we are also aware that our panel did not represent disabled people of all racial and economic backgrounds… 3/

We hope to feature panelists with a wider range of disability experiences in future webinars. We recommend other disability organizations like the @disabilityjust1 and @DisVisibility for perspectives we did not represent here. #COVID19 4/

@forwardrolling: Our goals today are to 1st, help validate & recognize that we are all having challenges in our communities and individually in our homes. Also as parents, as educators and as individual people who might have someone disabled in their home. 5/

Our panelists are disability advocates and parents of children with disabilities. So we have a kind of unique experience in our ideas and concepts. We want to share some things that have worked for us, and get some resources and knowledge out there for you. 6/

We hope our ideas and perspectives help empower you, and gives ideas of what you can do at home now and the future. Most of all, we want to end today with a sense that we're part of a larger magical community. 7/

In general, how can we in the disability & parenting communities help each other? There are social media options, but unfortunately, it's becoming increasingly clear from reports in the news that a lot of people don't have access to these options, and that's a privilege issue. 8/

A lot of people, especially older people, might not be familiar with social media or options like Zoom and Facebook Live, so if you’re good at that tech now is good time help less-tech-savvy or included folk make those work, if that's not something that's happening right now. 9/

Something vitally important during this pandemic, when people are scared & the info landscape is changing so quickly: you have to vet any infor you share/read. If info is not coming from a reliable source—a website you've never heard of, or more ads than content—be skeptical. 10/

If people share bad info with you, push back (maybe gently) if you can. We don't need more fear & misinformation during this pandemic; we need good info that's going to help us, & help us get through this together while maintaining our health & safety and mental well being. 11/

Anne Cohen says: One of the things that is so amazing about the disability community is that, for many of us, this isn't new. Being at home, being socially isolated, we have experience with this. And in some ways, that makes us experts. 12/

What are some good family and disability websites & resources? One is @DREDF, who, along with other coalition members, are advocating around healthcare access for people with disabilities because of concerns about [medical] rationing during the pandemic. 13/

@DREDF There is also a national #COVID19 help line developed by the Partners for Inclusive Strategies, which has organized around disability issues during natural disasters for years, & are taking a lead in this. Contact them at 800-626-4949 or [e-mail]. 14/

Thinking Person's Guide to Autism also has a #COVID19 resource page to help autistic and disabled people and their families find resources of all types during the pandemic:

thinkingautismguide.com/2020/04/tpgas-… 15/

@shannonrosa: One thing I've found helpful, from my perspective as a parent of an #autistic young adult with intellectual disability, is social stories & family stories, explaining pandemic disability issues in non-threatening & clear ways, e.g., tinyurl.com/GigisPlayhouse…. 16/

Social stories can explain #COVID19 for students & adults with developmental disabilities who currently need more reassurance, more explanations, & want to hear them again & again, to help them understand why they currently can't go back to school, why they have to stay home. 17/

Pandemic social stories can help students who miss their school (tinyurl.com/COVID19SocialS…), or people currently unable to leave group homes (tinyurl.com/COVID19SocialS…), as that is a reality in our community: disabled people are sheltering-in-place in group homes. 18/

Another issue we are seeing during the pandemic—unfortunately something we see in times of crises—is an uptick in interpersonal conflict and even violence while people are sequestered at home Disabled people are more vulnerable here, too. 19/

Many orgs that assist people with domestic violence, battered women, or other issues—emotional, sexual, verbal, physical—all have seen an uptick. Just recently a New York Times article (nytimes.com/2020/04/06/wor…) noted an increase of up to 18%, in some areas. 20/

Yes, we are supposed to be sheltering in place during #COVID19. However, abuse is an exception: if your place is unsafe, there are orgs that will help you try to find a safe shelter location. One is the Domestic Violence Hotline: [phone], thehotline.org. 21/

If you know someone you think is in danger of abuse or having a rough time with conflict in their home, please reach to them and check on them, even if it's just to listen to them. Makes sure they know about options, if you can do so without alerting/provoking their abuser. 22/

CN: abuse/death

Disabled children are also at higher risk of abuse and even filicide during the pandemic and shelter-in-place orders. @autselfadvocacy has a rundown on strategies for preventing abuse/filicide, as part of their anti-filicide toolkit:

autisticadvocacy.org/wp-content/upl… 23/

Co-parenting is an especially difficult complication during these times. Anne Cohen noted that disabled women like her experience higher rates of domestic violence, so it can be very stressful when co-parenting when divorced, or for people living together and co-parenting, 24/

Anne: While co-parenting, expressing some of your needs or explaining stressful situations to your child can be incredibly difficult, so please seek help.

One of the best groups in the Bay Area is SVWomen, an ongoing support group with resources: womensv.org. 25/

Be gentle with yourself. If you're afraid or scared and can't fully express your concerns with your partner regarding co-parenting, it's understandable.Many people who previously felt they were going through a good co-parenting relationship, there may currently be a strain. 26/

If you are experiencing a co-parenting crisis during the #COVID19 pandemic, you do have rights. Document your concerns, so if you need legal help afterwards, or during this crisis, you have documented what's happening. 27/

Shannon: Please consider the importance of maintaining calm and competent attitudes, and structured environments with your autistic and disabled children. It's really important to model good responses under these stressful pandemic circumstances. 28/

So while it’s understandable to be stressed right now, remember that many of our kids, especially our #autistic kids, are emotional resonators. They are going to take any emotions you are feeling and amplify them—and possibly throw them back at you. Which is not their fault. 29/

So even if it's difficult, it's important to try and be as calm as we can, as structured as we can, and maybe take more time away from each other if possible, if you can. That is OK! Cope however you can.

#autism #autistic #parenting #neurodiversity #pandemic

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What are strategies for addressing everyone's needs in close and stressful quarters and also while supporting disabled family members? One thing that happens in any family, but is especially important to notice in ours, is "competing access needs”: thinkingautismguide.com/2018/10/acknow… 31/

Competing access needs are when one person's accommodations needs conflict with someone else's accommodations needs. So for example, in my own family (Shannon) we have noisy people, and we have people who have hypersensitive hearing and are triggered by noises. 32/

We have to address both disability issues. You can't just tell one child to shut up, and the other to not be so sensitive. That's completely disregarding their disability accommodations needs. We have to do what we can to get everyone's needs met as much as possible. 33/

@AutisticEnough: I and my son are both #autistic. I am sensory avoidant and he's sensory seeking, so that is an example of competing access needs. However, I am an adult, so quite frankly I'm more capable of finding coping methods, and his needs kind of have to trump Mommy’s. 34/

Carol: Don’t make assumptions about the causes of anxiety. Yes. it's true that most of us autistics have life-long anxiety, depression, & co-existing conditions. It's the nature of living in a world that's not built for you. It's a very big deal in the #autism community. 35/

You need to remember that your autistic child may feel anxious but may have trouble expressing why they're feeling anxious, whether verbal, whatever level of AAC they can use—all autistics have some level of communication difficulty. 36/

So if your child is anxious, you should not necessarily jump to any conclusions about the exact nature of the anxiety. What we hear from the experts is that transitions are difficult for autistics, & that changes in routine & difficult for autistics. That is generally true. 37/

Carol recently wrote about pandemic-specific stressors for #autistic people: thinkingautismguide.com/2020/03/your-l…, and the big disruption in all of our routines. So all the rules have changed, yet NT people aren’t following those rules like they are supposed to—which is anxiety-provoking. 38/

Deborah on self-care as a disabled parent: It’s challenging, cognitively & physically. Knowing how to manage pain is the main thing; there are secondary problems with eating, vomiting, etc. When you're in pain you are less patient and agitate more easily. 39/

Deborah: It becomes a challenge as both my children that I care for and have their own challenges, many times have to become my caregivers. Learning to find balance is hard. I try to remember that a car without any gas isn't going anywhere. I have to re-fuel myself. 40/

Deborah: I try to do things so when I'm at my highest levels I'm not overburdening my children. They have become accustomed to it, to the point that when I am in extreme pain and not acting the usual way, they remind me to meditate or relax, and so forth. 41/

Deborah on changing expectations for our kids, socially & at schools; shaming from other parents & how we're dealing with that: We need to not be made to feel we're making the wrong choice because we can't do it all; try to understand someone's battle before making judgments. 42/

Anne: I think as parents with disabilities we always have this expectation—at least I do, and many of my friends do—where we feel like if we're having a difficult day an we have to be "home bound," and have to take care of ourselves, that somehow we're failing as parents. 43/

And it's kind of odd, now we are all in that situation, all working from home, so to some degree it's leveled that playing field. We see people at home, stressed out working at home with their kids, and to some degree we disabled parents become the experts on that. 44/

But at the same time, we disabled parents may not physically may not be able to keep up with everything in our household. We're being short with ourselves.

We need to be gentle with ourselves, and remind ourselves that we can't expect to be perfect. 45/

And our disabilities have taught our children how to be mindful, and how to treat people with respect, & how to cherish the things we can do in life, & not have to be a super parent.

There are amazing resources, one is the Disabled Parenting Project: disabledparenting.com, 46/

It's also important to rely on each other. Deborah & I became friends thru planning this webinar, we actually have the same rare form of muscular dystrophy autoimmune condition. Now we've been calling each other every few days, & we've been talking about parenting strategies. 47/

On kids having a rough time coping right now: @AutisticEnough: There's no way you can take everything that means everything to your kid, & not necessarily be able to communicate exactly why, or when it will resume—& not have the kid have a lot of feeling about that. #autism

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Even if the kid communicates in a way that doesn't involve aggression, that may eventually fall apart, and there may be some self-harm or even aggression toward other family members. It's almost inevitable. #49

If it's a self harm behavior you may or may not have to intervene. If it's an aggression against other family members you need to separate them & give them time and space to cool down before they can get together again in some way, socially but with some physical distance. /50

Shannon: With the current fear & stress for #autistic kids who thrive on school/routine and/or those who buck the stereotype & are actually extroverts desperately missing being social—people forget that everything our kids were dealing with before #COVID19 is STILL going on. 51/

Our kids with disabilities are still humans who have co-occurring conditions. They can have heartburn or a hurt ankle, & that can change the way they react or behave. We have to consider those issues when we wonder WTF is going on. We can't just blame the disability/autism. 52/

How is this storm of stressors affecting parents already having a hard time coping? What are strategies?

Deborah: Stress in general is a challenge for people, obviously, and especially in close quarters. The reality is, the more stress you have, the more pain you will be in. 53/

I've been figuring out ways to help myself reduce stress, and and then also help my children reduce their stress. If they're having an issue with each other, or me, we take turns writing our thoughts or speaking so everyone has a chance to hear each other. 54/

If you realize you did make a mistake, it's very important to apologize to your children. I tell my kids, "Yep, I was in a lot of pain, & that wasn't the best way to communicate with you, and I'm sorry." I do that with my children so they understand adults make mistakes, too. 55/

What about meltdowns happening because the consistency of classes and schedules has changed so dramatically?

Shannon: Do not expect your child to take to this transition easily. Change is really hard for our kids & autistic people in general, and we have to be patient. 56/

Be as hands-off as you can with any way your child needs to self soothe. If they need to stim, hand flapping, tearing paper, whatever they need to do. You don't want someone judging you if you are binge watching right now, so don't judge your children for how they're coping. 57/

If you can add as much structure to your #autistic child's life as possible during pandemic disruptions. Do a visual schedule, or, if they read, do a printed schedule. And most importantly, you need to be a reliable person who sticks to that schedule and doesn't change it. /58

Anne: A big part of the disability community is acknowledging chemical sensitivities. In a lot of our events we talk about not wearing perfumes, being careful about what cleaning supplies we use in common spaces: That's all out the window with #COVID19 cleaning/precautions. 59/

The CDC recommends bleach, which is problematic for people with chemical sensitivities or autoimmune conditions. We're not rejecting CDC guidelines, but we need to ensure safe spaces. So if you use bleach, either air the space out, or go outside until the room airs out. 60/

If people need help, where can they go? Who can they call? @AutisticEnough says Always try to go local first: there are all kinds of social service organization: Lions club, Kiwanis club, Rotary club, that are delighted to help with all kinds of services. 61/

There are also national orgs like Parent to Parent USA (p2pusa.org) who are happy to help, there are Centers for Independent Living (ilru.org/projects/cil-n…) that you can look to. 62/

Need support? Foundation Center (candid.org) can get you in touch with local foundations. You can also look to religious organizations even if you aren't of that faith (or any faith). Most religious orgs will help people in need regardless of their belief system. 63/

Boys and Girls Club (bgca.org/news-stories/2…) is another national organization that is helping people, specifically those who are having problems with food security right now. 64/

Another issue of concern to the #disability community is medical rationing: the concept that parents or children with disabilities will not get the same care as a person without a disability. Even though the Federal government has declared this illegal, it's still a concern. 65/

Anne: The disability community is afraid for our lives. Those of us who are oxygen dependent or use ventilators are afraid our devices will be taken away, because we are already seen as not as likely to survive as someone who doesn't have a disability. It's an ethical issue. 66/

Those fighting against medial rationing for PWD include @DREDF (dredf.org/the-illegality…). There are also Health Passports documents to bring to the hospital (flfcic.fmhi.usf.edu/docs/FCIC_Heal…), and statements of communication rights from @U4CommChoice (communicationfirst.org/covid-19). 67/

Deborah: We have some more links for disability resources and advocacy: National Disability Advocacy Hotline [phone], [e-mail]), Pain Advocate Warriors (facebook.com/PainAdvocateWa…), etc. and I volunteer with some of these organizations.

What about fun things to do at home with our kids while sheltering at home?

Deborah: Take a look at your household, & the kid. What is their disability? How do they learn best? What things hold their interest? We have different boxes: Arts & crafts boxes. 69/ sensory boxes.

Shannon: You might want to present new ideas gently & see how kids take to them. For those who aren't into transitions/change: you might need to introduce activities several times. Not forcing, obviously, but instead presenting them with the option to use it more than once. 70/

Some kids in our community require a lot of activity, not just because it's who they are, but because it's crucial to their ability to self-regulate.

I would say just be as creative as you can. If it's crucial for your child to have access to exercise, do it any way you can. 71/

Deborah: Redefine success. Success for us may not look like it does for someone else. For people with chronic illness success may be re-defined hourly, because our norm can change from minute to minute. Don't judge yourself for not being able to do everything you want to do. 72

It's really important that we parents are not too hard on ourselves. If we're too hard on ourselves, we pass that on to our loved ones, they see that, and it teaches them to be hard on themselves, too. So we want to teach them recognition and acceptance of what we can do. 73/

How do we homeschool our children with disabilities on IEPs that don't have their regular supports?

@AutisticEnough is not only an autistic parent of an #autistic teenager, but a special education advocate. So your rights under IDEA are actually her area of expertise. 74/

Carol: If you send your child to public school, and you get everything through the public school, and have always had a contentious relationship with the school district, now might not be the best time to necessarily reach out about best practices for at-home school. 75/

IEPs: IDEA is implemented based on federal laws, however states have laws as well, and that can vary quite a bit. So you rally need to check out IDEA not only on a Federal level, but also your DOE or your state and federal IDEA regulations and see if there is any variance. 76/

The Council for Exceptional Children, CEC.SPED.org has resources for general special education advice, as well as local chapters.

The Council of Parent Attorneys And Advocates, COPAA.org, can connect you to a specific professionals by zip code. 77/

Shannon: While our rights are protected under IDEA, that doesn't tell us what to do with our kids at home. I've tried to keep in mind that these are unprecedented times, things are changing day to day, and your school may not have quite caught up with what they need to do. 78/

With schools moving online and trying to do a lot of online curriculum, the issue I'm facing—and I don't know others are encountering this with kids—but we're trying to do online IEP curriculum via Zoom and Caribu, and my son's response is pretty much "No thank you.” 79/

We are allowing our son time to adapt, to say no if it's too weird for him, if it's something he can't cope with it right now. It can be really hard. Have patience with your child and yourself, but keep the school liable for supplying the IEP materials you & your child need. 80/

We were not able to cover all the questions that came in so we are going to look at continue this webinar, & inviting other experts & panelists to come & join us. We'll keep everyone here posted on future webinars. We are incredibly, incredibly grateful to have you join us. 81/81