Magical Bridge Foundation recently co-hosted a webinar on Disability and Inclusion Strategies During COVID-19 with Thinking Person’s Guide to Autism, to address some of the issues disabled and autistic people and their families are struggling with right now. Jill Asher from Magical Bridge moderated, TPGA’s senior editor Shanon Rosa ran the questions, and our panelists were three disabled parents of children with disabilities: Carol Greenburg, Editor of Thinking Person’s Guide to Autism, and disability consultants Anne Cohen and Deborah Vick led the conversation. We hope this is the first of many useful sessions! Video links and full transcript below.
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Jill Asher: Hi everyone. Good morning, or good afternoon wherever you are. My name is Jill Asher. I’m the executive director and co-founder of Magical Bridge. We are so incredibly grateful to have you join us today as we discuss disability and inclusive strategies during COVID-19. We hope everyone is safe and health and sheltering in place right now, wherever you are.
A quick introduction: At Magical Bridge Playground and Foundation we create playgrounds for absolutely everyone, regardless of ability, disability, size, or age. We welcome everyone. The only playground we have at the moment in in Palo Alto, California, Silicon Valley but are working on building eleven playgrounds in the Bay Area and worldwide. We’d love for you to come visit us on our website, magicalbridge.org.
We wanted to offer a way to get together with thought leaders, especially those who have expertise with disabilities and the disability community, and so Shannon partnered with us from Thinking Person’s Guide to Autism (thinkingautismguide.com) so we could bring this webinar to you. Shannon, I’m going to turn it over to you.
Shannon Rosa: Thanks, Jill! We’re excited that everybody’s here. We wanted to acknowledge that we are all stressed right now—and that’s okay. We also wanted to clarify that although our participants and their children represent a range of disability experiences, we are also aware that we don’t represent people of all racial and economic backgrounds. We hope to address these issues in future webinars, just like we are hoping to address any unaddressed issues from this webinar in future webinars. We recommend other disability organizations like the Disability Justice Culture Club (www.facebook.com/disabilityjusticecultureclub) and Disability Visibility Project (disabilityvisibilityproject.com) for perspectives we are not representing today.
We also wanted to thank Maxfield Sparrow of UnstrangeMind.com for ensuring we currently have closed captions available. (You can turn CC on from the bottom of your screen.) If it seems we’re speaking slowly, that is the reason: Our intrepid captioneer needs to have the time to transcribe the captions.
I’m now going to turn it over to Deborah Vick, who going to do the introduction to our webinar’s goals.
[short spate discussing webinar technical hiccups.]
Deborah Vick: Thank you so much everyone who has attended, this is just amazing. We’re surprised to see so many people joining us, and I want to express great gratitude to Jill and Shannon for putting this together, as well as to my co-panelists. We’ve been working hard to get our goals and ideas together, and I thank everyone who is here to help us out today.
Our goals today are to first, help validate and recognize that we are all having challenges. This is a challenging time in our communities and individually in our homes. It’s a challenging time, and I want to recognize that—as parents, as educators and as individual people who might have someone disabled in their home.
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, in hopes this empowers 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.
Shannon: Thank you so much, Deborah. I wanted to make sure we know everybody who’s here. Our panel is going to be led by me, Shannon Rosa from Thinking Person’s Guide to Autism and will be moderated by Jill Asher from Magical Bridge Foundation.
Our discussants are Carol Greenburg, a special education advocate and my co-editor at Thinking Person’s Guide to Autism; Deborah Vick who is a STEAM educator and a champion with the Christopher Reeve Foundation; and Anne Cohen, who is a disability and policy consultant. Our captioning is again being provided by Mayfield Sparrow, of Unstrange Mind.
The first things we’re going to talk about is, just in general, how can we help each other? What we’ve been talking about is social media and facebook media tips. There are a lot of 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 which is again something we hope to address more fully in a future webinar.
But right now we’re going to talk about the fact that you really can do connections via social media and via Facebook—we’re streaming this on Facebook live right now—and other ways.
A lot of people, especially older people, might not be familiar with these aspects, and it’s a good time to help people who don’t know social media or options like Zoom and Facebook Live, to maybe help them make those work if that’s not something that’s happening right now.
We also want to be really clear on something that is vitally important during a time when so many people are so scared and the information landscape is changing so quickly: that you have to vet any information that you share or read. If information is not coming from a reliable source—if it’s from a website you’ve never heard of, if it’s from a website that has so many pop ups that it’s hard to access the content, these are things to be skeptical of. And maybe share that possibility with people who are sharing these information sources, and gently push back if you need to. Because we don’t need more fear and misinformation right now; we need good information that’s going to help us, and help us get through this together while maintaining our health and safety and mental well being.
We wanted to talk about some good family and disability websites and resources, and Anne Cohen is one of the people who is a real expert in this area. Anne, are you ready to talk about some disability resources and websites?
Anne Cohen: Thanks Shannon. 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.
From the get-go, our community has been organizing, We mentioned the Disability Justice Culture Club, they were one of the early leaders in the Bay Area to galvanize and makes sure there was collective action in the community, whether it was for care attendant services, or providing access to food, and other supports in the East Bay. And nationally there are lot of folks who have been organizing, one important one is the Disability Rights Education and Defense Fund (DREDF.org), along with other coalition members, who are advocating around healthcare access for people with disabilities because of concerns about [medical] rationing.
There is now a national help line that was developed by the Partners for Inclusive Strategies, they have organized around natural disaster for years, and they are taking a lead in this. That phone number is 800-626-4949 and they also have an email address: email@example.com.
We are very fortunate that our national disability rights leaders and local leaders and others have been taking the lead to make sure folks are supporting our community. And again, we’ll be sharing additional resources throughout this talk.
Shannon: Thanks so much, Anne. We also wanted to share that Thinking Person’s Guide to Autism has a COVID-19 resource page: www.thinkingautismguide.com/2020/04/tpgas-resources-for-coping-with-covid.html. It lists a lot of these resources that Anne is talking about, and also some ones I’m going to talk about right now.
But if you have more resources that you want us to share, you can email them to me at Thinking Person’s Guide to Autism, and we’ll include them and update our list.
One thing I’ve found very helpful, from my perspective as a parent of a young adult with autism and intellectual disability, is social stories and family stories, explaining what’s going on in non-threatening and clear ways. You can see social stories explaining COVID-19 for students and adults with developmental disabilities who currently need more reassurance, more explanations, they perhaps they can go over again and again, to help them understand why they currently can’t go back to school why they have to stay home.
If you go to the Thinking Person’s Guide to Autism website, we have social stories there for students who are missing their school (tinyurl.com/COVID19SocialStoryFamilyHome), and for people who live in group homes (tinyurl.com/COVID19SocialStoryGroupHomeDeborah Vick), because that is a reality in our community: people are currently having to stay in their group homes, and are not currently able to visit their families.
One of the things we’re seeing right now, unfortunately something we see in times of crises, is an uptick in interpersonal conflict while people are sequestered at home. Deborah, are you ready to talk about this?
Deborah: One of the things we’re seeing, across the world actually, is an increase in domestic violence. People don’t necessarily have the skills they need to resolve interpersonal conflict, or are already being oppressed by somebody in their household. The increased stress and violence is overwhelming. A lot of the organizations that assist people with domestic violence, women that are being battered, or other issues, be it emotional, sexual, verbal, physical, all have seen an uptick. Just recently a New York Times article (www.nytimes.com/2020/04/06/world/coronavirus-domestic-violence.html) that said there was an increase of up to 18%, in some areas.
One thing we want to recognize is that yes, we are supposed to be sheltering in place. However, there is an exception: if your shelter in place is an unsafe area, there are places you can call and reach out to that will help you try to find another location to shelter that is safe for you and your family. One is the Domestic Violence Hotline: 1-800-799-7233, www.thehotline.org.
Shannon: This is a concern, and if you know someone you think is in danger 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.
Next we want to talk with Anne about issues for people co-parenting right now, which is an especially difficult complication during these times.
Anne: Hi, Thanks so much. As a woman with a disability, I want to talk about how we experience higher rates of domestic violence, so it can be very stressful when co-parenting when divorced, or for people who are living together and co-parenting, the biggest piece of advice I can express is that it can be incredibly hard, so there are things you might have to do in terms of expressing some of your needs, 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 for folks. It is incredibly helpful so please reach out to them, the link is www.womensv.org.
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. For many people who previously felt they were going through a good co-parenting relationship, there may currently be a strain. I want you to know that you do have rights. Many members in our community experiencing that have been documenting their concerns, so if they need legal help afterwards, or during this crisis, they have documented what’s happening.
I want to acknowledge that this is a challenging time for everybody, but there are resources to support you.
Shannon: The next thing we wanted to talk about is the importance of maintaining calm and competent and structured environments with your children. It’s really important to model good responses under these stressful circumstances, because a lot of our children, especially our autistic children, 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. 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.
The next section is about strategies for addressing everyone’s needs in close and stressful quarters and also while supporting disabled family members
One of the things that happens in any family, but is especially important to notice in our families with disabled members is called “competing access needs” (www.thinkingautismguide.com/2018/10/acknowledging-and-accepting-competing.html). That’s when one person’s accommodations needs conflict with someone else’s accommodations needs. So for example, in my own family we have noisy people, and we have people who have hypersensitive hearing and are triggered by noises.
Competing access needs are real. I don’t think it’s possible to absolutely accommodate everybody every time, but we have to be aware that those competing access needs exist. So if one child is making noise, and the other is freaking out, that is a real situation. We have to address both of those 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.
Please remember these competing access needs are real, and try not to blame your children for having conflicting disabilities.
Carol is going to talk about anxiety and self-care during these times.
Carol Greenburg: On the issue of competing access needs. I and my son are both autistic. I am sensory avoidant and he’s sensory seeking, so that is a very good example of competing access needs. However, I am an adult and he is my son, so quite frankly I’m more capable of finding coping methods for what I need, and his needs kind of have to trump Mommy’s.
About anxiety, it’s hard not to make assumptions. Yes. it’s true that those of us who are autistic, most of us have life-long anxiety, depression, and co-existing conditions. It’s part of the nature of living in a world that’s not built for you. It’s a very big deal in the autism community.
Having had to deal with it my whole life, and my son dealing with it his whole life in his way, we have more practice and that’s good. On the other hand, since we’re autistic and other people’s emotions are extremely contagious to us, that makes it harder, especially in quarantine.
One thing you need to remember is 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.
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, and that changes in routine are difficult for autistics. That is generally true, however, one thing I recently wrote about at Thinking Person’s Guide to Autism (www.thinkingautismguide.com/2020/03/your-lax-social-distancing-is-stressing.html) is that now when I poked my head out the door to see if it’s okay to go outside, at first I thought, this is a big change. Everything we have been taught about how to “properly” socialize, that we should shake hands, we should not stand too far away, we should make eye contact: All of that has been turned upside down by social distancing.
That’s a big disruption in all of our routines. But that is not the only problem we’re having right now in terms of anxiety. We autistics tend to be rule followers, whether trained from birth by compliance training like ABA to follow the rules lest we face a terrible negative consequence, or whether it’s an autistic trait. The point is, there are rules that should be followed and social distancing is one of them.
So when I stuck my head out the window, I said, “I can get used to a totally different rule. I’ve been having to get used to rules that make no sense to me my whole life! I can do this. Then I went outside, all prepared to follow these new rules of social distancing—and saw half the people around me weren’t following the rules! That drove me up and down the wall, I had a meltdown, and had to run home to finish the meltdown at home!
Shannon: I’m so sorry, Carol. Deborah, you come at self care from a different angle. Can you talk about what that means for you?
Deborah: Self care for me is challenging in a couple of ways. I’ll talk about some things I’ve done to help myself, but first, I have multiple disorders that affect me cognitively and physically and can make me pass out or be bedridden for days.
Knowing how to manage my pain is the main thing; there are secondary problems with eating, vomiting, etc. It becomes a challenge because 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. The one thing that I try to remember is that a car without any gas isn’t going anywhere. I have to re-fuel myself, and take the time to have the energy to care for my children.
When you’re in pain you are less patient and agitate more easily. 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.
Back to modeling the way we want to be so our children model it back: I work on taking care of myself so we can all do that. I would like to remind people that there are many different means of self care, meditation, yoga, journaling, art programs, crafting, all sorts of things.
Shannon: Another thing we’ve been talking about is the changing expectations for our children, socially and at schools, and how that’s led to some shaming from other parents, and how we’re dealing with that.
Deborah: It’s a challenge when you’re a parent with a disability, and you need to have certain things taken care of, and you’re not necessarily able to do the same education at home due to energy, physical limitations, cognitive ability, etc. that makes it so we can’t do things within the expected time zone.
We need to not be made to feel we’re making the wrong choice because we can’t do it all. I’ve encountered challenges with people who worked with me but didn’t understand why I took my child out of school two weeks prior to the school closing. But I had to do that, because I am oxygen-dependent, and I have autoimmune disabilities. On a good day my lungs work at 50% functionality. If he brought illness home from school, I would need to be hospitalized and on a respirator. I’m not exaggerating; the flu vaccine put me in the hospital for two weeks.
That was an issue that I had to go up against, and it was a challenge because people didn’t understand why I pulled him out of school. Neighbors and other people thought I was over reacting. That’s something that happens a lot when people don’t understand things. People make judgments instead of trying to understand the situation.
A thing I want to pass on to everybody is we all have challenges, all are battling something. Take a moment to try to understand someone’s battle before making judgements, and more likely than not, you’ll be able to help and understand a lot better.
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.
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 become the experts on that. But at the same time, we 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. And our disabilities have taught our children how to be mindful, and how to treat people with respect, and how to cherish the things we can do in life, and not have to be a super parent.
There are amazing resources for parents, one is the Disabled Parenting Project (disabledparenting.com), which has a great blog.
It’s also important to rely on each other. Deborah and I became friends through planning this webinar, we actually have the same rare form of muscular dystrophy autoimmune condition, it’s hard to find folks with that condition and we met through this panel. And now we’ve been calling each other every few days, and we’ve been talking about parenting strategies.
So when her son was acting out and throwing things, I got on FaceTime with her, and said, “Hey, I’m watching you!” And he paused. And I said, “Hey, do you want to get through this and get a reward?” And I went one step further—Deborah and I are both Jewish, we joke about the Jewish Mom Guilt Trip, that our Jewish mothers would say, “How can you act that way, I curse you, may you have a child who is the same!” And we both have sons who have similar disabilities, ADHD and sensory issues, so I looked at her son—and this is what I have done with my son—and I said, of course jokingly, “I’m watching you, and if you don’t stop you may have a child just like you,” and went into the whole history of Jewish mom guilt-tripping, And I said, “You know, if there are two of us watching you at the same time, the pact is sealed.” And you know that little kids can be all into imaginary play, and he looked at me and said, “Oh, I’m going to be good. I’m not going to do that!” and then asked, “Is that what you did to your parents?”
Coming up with strategies to defuse tension can help makes things easier.
Shannon: One of the things that goes along with the topic of parent shame and judgment and coping is the fact that for some of us, the shame and guilt can spiral to self harm and aggression and domestic violence. And while we covered that a little bit, Carol, could you talk about it more? And then Deborah, about how this stress and anxiety and judgment is a perfect storm for struggling people.
Carol: It is a vicious circle. There’s no way you can take everything that means everything to your kid, and not necessarily be able to communicate exactly why, or when it will resume, and not have the kid have a lot of feeling about that.
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. The best thing to do in a situation like that: 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 and give them time and space to cool down before they can get together again in some way, socially but with some physical distance, and talk to each other again or communicate in some way and mend whatever happened. I don’t know if that’s too general?
Shannon: No, that’s actually helpful. One of the things people are preoccupied with right now is the idea that pandemic, fear and the stress caused by all these changes, especially for children who thrive in school and with routine, and for those who buck the autistic stereotype and are actually extroverts and are desperately missing social scenes—people forget that everything our kids were dealing with before now is still going on. One thing our audience and community really needs to remember is our kids with disabilities are still humans who have co-occurring conditions.
So for instance my son is autistic, and we have to be careful about remembering that he can still get sick, or have stuff like heartburn or a hurt ankle, that can change the way he’s reacting, can change the way he’s behaving. We have to consider those potential issues when we wonder what is going on with him. We can’t just blame the disability, can’t just blame autism. We have to remember our kids have other stuff going on too. And parents who are disabled themselves, like our panelists, are aware of this. But a lot of people in our audience are professionals or parents who might not have disabilities themselves.
Transitioning from that, Deborah, if you’re ready, we talked a little bit about how this storm of stressors is having a negative effect on parents who are already having a hard time coping. and talking about coping strategies.
Deborah: Stress in general is a challenge for people, obviously, and especially in close quarters. And I have disorders impacted by stress. And for all three of those disorders I’m supposed to take it slow, which, I’m still working on that whole pacing thing. Stress can trigger a myasthenia gravis crisis or dysautonomia crisis, and cause more pain.
The reality is, the more stress you have, the more pain you will be in. For people like myself who have Ehlers-Danlos, and my joints dislocate and sublux, and my muscles will spasm, getting stressed is only going to make that worse. For me when I get really stressed my entire body will shut down and I can’t get out of bed or function. So I’ve been figuring out ways to help myself reduce stress, and and then also help my children reduce their stress.
I’ve been a mediator before and I try to use mediation-type speaking with my children. 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, and they don’t interrupt the other person. I try to mirror that so if there is a problem they can come back and discuss it in a much more calm way.
One of my children has ODD, and there are times he can go from zero to eighty, it can take a long time for him to hear the other person’s perspective. Sometimes we have to stop, and walk away and do something else, and then come back, simply because the anger is so raw, he won’t be able to process or hear what I’m saying.
I take time out as well as give them time outs, because I’m human too, I can get too agitated sometimes. I Tell them, sometimes Mommy needs time. 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, and 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, and the form of communication I chose is not what they should do, and it’s not what I wanted to do either.
Shannon: Those are all really important points. And Jill wanted to ask a question before we move on.
Jill: A couple things. There have been a lot of comments about schools being closed right now, and a lot of the students that are on IEPs or have disabilities aren’t receiving their regular services. And there seem to be a lot of meltdowns happening in the homes because there isn’t this consistency of classes and schedules. And I wanted to know if we can address that specifically, even though we are not trained therapists.
Shannon: That is true, we are not trained therapists, but in the case of Carol, who is autistic herself, and me, we both have teenage, high support, partially-speaking autistic sons so we get this. Both of our sons are extremely upset by this change. They require one-to-one supports in their schools and at home, and are not pleased with this change in their routines. Carol, I don’t know what your son is saying specifically, but my son asks to go on the bus every day. And I would say, and Carol you can add to this, but the first thing I would say is do not expect your child to take to this transition easily. Change is really, really hard for our kids and autistic people in general, and we have to be patient.
Be as hands-off as you can with any way they need to self soothe. If they need to stim more, 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.
If you can add as much structure to their life as possible. 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. You need to be a person they can trust, because everything else has been pulled out from underneath them. So, to the best of your abilities, you need to provide that structure. Carol, what did you want to add?
Carol: Oh, a lot. My son and I are New Yorkers. He’s a Brooklyn boy. What he wants to do most is ride the subway. So it’s not the bus, it’s the train. When is he going to be able to ride the train again, because Manhattan is his playground and he’s not used to being unable to go into Manhattan and other parts of Brooklyn and do all the things he loves to do, which he does with an aide.
My son is also a runner. Not in the sense of trying to escape the house and put himself in danger, but literally: He’s run in 5K races, he runs five miles a day at school on the treadmill, he’s a marathon runner, he’s a sprinter. He’s a very talented athlete and used to being extremely physically active, and this has all been pulled out from under him.
We do have a virtual reality headset at home. It’s expensive, and not possible for everyone to get, but it’s well worth it to us, and if you can get funding, this is a great thing for sensory seekers. That’s been helpful to him.
One thing I wanted to add about this, because we talked about shaming and aides and having your kid outside: My son’s aides are all in their 20s because even if we’d had him in our 20s, we never could have kept up with him. His aides are all big long-legged people, and the reason he is able to socially distance from other people. Because to socially distance he needs an aide who can be a little lax with the social distancing between them and my son, so they can keep up with him enough to prevent him from running over to other people. Those are the compromises we have to make. He’s in the aide’s orbit every day. Maybe it’s not perfect but it is a heck of a lot better than him running ahead and breaking social distance with everyone in the neighborhood.
Shannon: Another thing about the social aspects of staying home that some people may not have thought about is the role of allergies and environmental factors. Anne?
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.
Right now the CDC recommends using bleach, which is problematic for people with chemical sensitivities or people like myself with an autoimmune condition. We’re not here to push back against CDC guidelines, but we need to do things to ensure spaces are still safe for people. So if you do have to use bleach, open the windows and air the space out, or go outside until the room airs out. These are things that I have done.
This may be our new normal moving forwards, and so disability groups will have to learn how to balance keeping the public safe with the need to cope with environmental allergies. For your own sake, there are a lot of vinegar-based things that are talked about but aren’t necessarily proven, so be aware of that.
Shannon: Thank you, Anne. To go back to Carol talking about her son being so incredibly active, there are a lot of online resources for our kids like museums (www.metmuseum.org/art/online-features) and science academies (www.calacademy.org/academy-home) and zoos (zoo.sandiegozoo.org/live-cams) where you can take virtual visits. It’s not the same as being there, but it gives our kids somewhere to “go”
Now we want to talk move into talking about resources that people should know about during these times. Carol, could you talk about the importance of local resources?
Carol: I’m very politically involved. I have been politically involved in a general sense leading up to the 2018 elections. And that has helped me learn who the institutions and public servants in my area are. Who are the institutions, who are the public servants and elected officials, whom I now know quite well. If I have a particular problem in my area, New York City, it’s better for me to go to a city council member or city assembly member. I hate to put it this way, but they’re the lower level people. I don’t want to be sending emails to Mayor de Blasio. I’d rather be sending emails or making calls to my local city council member, whose campaign I worked on and whom I know personally, and who has a reputation for getting things done. Also you don’t get elected to office unless you are very, very involved in your local community.
Always try to go local first in the political sense, but also in the private sense: there are all kinds of social service organization: Lions club, Kiwanis club, Rotary club, that are delighted to help with all kinds of services. Look up your local Kiwanis club, any sort of club: Knights of Columbus.
There are also national orgs like Parent to Parent USA (www.p2pusa.org) who are happy to help, there are Centers for Independent Living (www.ilru.org/projects/cil-net/cil-center-and-association-directory) that you can look to. 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 organizations will help people in need regardless of which belief system they are coming from.
Shannon: I also wanted to mention that Boys and Girls Club (www.bgca.org/news-stories/2020/March/BGCs-nationwide-feed-in-need-communities-during-COVID-19-crisis) is another national organization that is helping people who are having problems with food security right now.
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. And even though the Federal government has declared this illegal, it’s still a concern. Anne, can you take this, and explain what we can do about it?
Anne: It’s a really direct concern for the disability community. We’re afraid for our lives. Those of us who are oxygen dependent or use ventilators are afraid our devices will be taken away from us, because our lives are seen as already fragile and not as likely to survive as someone else who doesn’t have a disability. It’s an ethical issue.
There is a lot of work being done in this area, including by the Disability Rights Education and Defense Fund (dredf.org/the-illegality-of-medical-rationing-on-the-basis-of-disability). There are helpful documents to bring to the hospital (flfcic.fmhi.usf.edu/docs/FCIC_Health_Passport_Form_Typeable_English.pdf), what you can communicate to your provider (communicationfirst.org/covid-19), those are all important things.
This is uncharted territory for the medical system right now in terms of capacity, but it is an ongoing fear that the disability community has had for years, about our access to medical care. So there are folks that are working on your behalf, and I want to make you aware fo those resources.
Shannon: Thank you, Anne. Moving on from there, we want to talk about something a little more light hearted: activities to do while sheltering at home with families with disabilities. Deborah has some ideas, this is actually her area of specialty.
Deborah: Before that, we have a some more links for disability resources and advocacy: National Disability Advocacy Hotline, Pain Advocate Warriors (www.facebook.com/PainAdvocateWarriors), etc. and I volunteer with some of these organizations.
Today I’m also going to talk about the fun things! Fun time at home! We don’t have a regular school day even if we’re trying to keep a schedule, which I know a lot of us do; I’m not as good at that one with my child right now, we’re struggling with that.
We do STEAM, which is science, technology, engineering, arts, and mathematics (steamedu.com), which can be a lot of fun. It does not require you to have special equipment, or a chemistry box, or anything like that. The first things I would say is to take a look at your household, and the person you want to help. What is their disability? How do they learn best? What things hold their interest?
My children are both hands on—very hands on—so we always have maker-space style activities in my household. We have different boxes for different types of things: Arts and crafts for calming down and settling down, chemical reaction activities supplies: cornstarch, baking soda, popsicle sticks, Alka-Seltzer, etc.; things that can really make a fun kit. I’ll be co-writing a blog with another gentleman at Magical Bridge to share some of these ideas.
Another box to make could be a sensory box. I especially used this when my boys were younger, although recently that sensory box has been used again, and my son still loves it. The sensory box has different textured sands and doughs and things.
Whatever your child or adult needs, try to think of them, and think outside the box—not necessarily what the directions tell you, but what they need, and how you can best help them.
Shannon: For a lot of our kids, not everyone has online access, and also a lot of our kids aren’t necessarily self starters, so you might want to present these ideas and see how they take to it. And also understand again, for kids who aren’t into transitions, and who aren’t into change: you might need to introduce activities several times, because they might not be interested at first. And this is different from forcing, obviously, but instead presenting them with the option to use it, several times.
Also, there are a lot of online options for entertainment and activities for children of all developmental and communication abilities included in the Thinking Person’s Guide to Autism links for COVID-19 (www.thinkingautismguide.com/2020/04/tpgas-resources-for-coping-with-covid.html).
Another thing Carol talked about is active kids, and right now it’s really hard to have an active kid. We are fortunate in that our neighborhood park has not closed—it’s a hiking park, not a playground park—but most of the other parks in our area are closed. And for some of the children in our community require a lot of activity, not just because it’s who they are, like Carol’s son, but because it’s crucial to their ability to self-regulate.
I would say just be as creative as you can. It’s crucial for your child to have access to exercise, any way you can.
In closing, Deborah, when we were planning this webinar you talked about being realistic, about defining success while parenting at home during pandemic times.
Deborah: I would suggest to include your loved ones in the process of deciding activities. When I work with my scouts, I’ll sometimes have a kid who won’t want to fully participate. When we were selling popcorn I had a scout who refused to go to selling door-to-doors, but who was OK with going with me to collect money. And then eventually, he was up at front by the door selling popcorn. So sometimes, it’s a baby step, it’s slow introductions, it’s being patient.
And that leads into redefining 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. And I say that, but I’ll be perfectly honest in that it’s not an easy thing to do, and there are plenty of times that I do not see myself as a good mother, because I can’t do everything I need to do. And while it’s hard for me, to my children I’m SuperMom because of everything I do despite my challenges.
I admit it’s hard for me, with my challenges, but it’s important to note that while I see everything I can’t do anymore, my children see everything I CAN do and am doing still.
It’s really important that we’re 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.
On that note, I always talk about the redefinition of success. When we do smart goals, it is the same thing: we ask ourselves if it’s a realistic goal. Can you accomplish it in the timeline? If not, make goals that are realistic for YOU and your loved ones, not what’s realistic for someone else. In Cub Scouts our motto is to do our best, and I try to teach that to my kids, all the time: We go with the words, “I can do it, and I will do it, in my own way of getting there. It may not be the same path as somebody else, but we’ll eventually get there.”
Jill: We were scheduled to end this webinar four minutes ago but we’re going to keep going, because there are so many questions happening.
I also wanted to add that at Magical Bridge we heard loud and clear that the shelter in place is really difficult for many families, especially those with disabilities, so we are offering free family friendly concerts every day on the Magical Bridge facebook page (www.facebook.com/MagicalBridge). They are recorded as well, so you can go back and look at them.
Also, Deborah Vick and our team are working on putting together resources of activities that are fun to do with your families, whether young or young at heart. There will be a resource list that will go up on the Magical Bridge blog (magicalbridge.org/category/blog), and we’ll continue to update it, and there will be a lot of STEM and STEAM activities as well, for you to do at home.
I wanted to ask some questions from our community that are coming in: questions about the fact that shelter in place means we are all now home schooling our children, and there’s a real, urgent need for support in homeschooling our kids with disabilities. Shannon or Carol, are you able to address that issue? This is new for all of us, but how do we homeschool our children with disabilities on IEPs that don’t have their regular supports?
Shannon: I want to hand this over to Carol, and I want to point out that Carol is not just an autistic parent of an autistic teenager, but she is a special education advocate. So your rights under IDEA (sites.ed.gov/idea) are actually Carol’s area of expertise.
Carol: OK. Remember before when I said go local first and then go bigger? That doesn’t always work out with your rights under IDEA because it depends on you relationship, your whole past relationship, with your district and your school. 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. If on the other hand you’ve always had a good relationship, and successful, productive IEP meetings, your local people might be the ones to reach out to first for a given service.
Another one thing you have to keep in mind are: What are your state laws? Because how IDEA is implemented is based on federal laws, however states have laws as well around how IDEA is implemented, and that can vary quite a bit. So you really need to check out IDEA not only on a Federal level, but also your department of education or your state and federal IDEA regulations and see if there is any variance.
We used to have OSEP, the National Office of Special Education Programs (www2.ed.gov/about/offices/list/osers/osep/index.html), which was a source you could trust, but right now on a national level the government has removed a lot of information about IDEA, our current “person” in charge is not a very reliable source of good information, so be careful when you check it out because there’s a lot missing that used to be there, on that national site. You may want to go to your state IDEA site for that reason.
There are two national organization that I would recommend that can point you towards (if you’re an educator but even as a parent): The Council for Exceptional Children, CEC.SPED.org, is a good place to look. They have a website right now about children in special education, and educators of children in special education, but they also have a list of resources for people who are looking for special education advice in general. That’s a good place to go, if you’re just looking for general, across-the-board questions. They might be able to direct you to a local chapter.
The other organization, of which I am a member, is the Council of Parent Attorneys And Advocates, COPAA.org. So if you need somebody specific, basically you type in your zip code, and if you’re looking for, say, an advocate in private practice—which is what I am—they have essentially yellow pages of people who can provide whatever you’re looking for; most of us do charge, who are in private practice. But they also have all sorts of other resources as well. Type in your zip code.
We were just called for an IEP meeting for our son, we used to be able to just do it over the phone, now it’s going to be via video, that’s going to be really hard on me, but it looks like I’m stuck with it.
Shannon: Homeschooling is a separate issue, though. Our rights are protected, but that doesn’t necessarily tell us what to do with our kids at home. And one of the things that I’ve tried to keep in mind is that these are unprecedented times for everybody, and things are changing day to day, and your school may not have quite caught up with what they need to do to properly support you and your child at home.
I would again say please be patient, and let your kid do whatever they need to do during this time to compensate and cope, and that’s OK, but with schools moving online and trying to do a lot of online curriculum, the issue I’m facing—and I don’t know if Carol or any of the other panelists are encountering this with your kids—but we’re trying to do online curriculum the way we’re doing this online meeting here, and my son’s response is “No thank you.”
We are fortunate in hat they have been doing this for two weeks and with the exception of morning Calendar interaction time, he’s not interested because that’s not what he does; that’s not how his school goes. In our case we are relying on the curriculum the school has provided for us, and we are going as slowly as we can. We are allowing our son time to adapt, we are allowing him 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 materials you and your child need.
One thing I want to say specifically for parents of young autistic children right now: I’ve seen people freaking out about the concept of their child “regressing,” and that’s not a thing (Carol echoes” NOT A THING!”). Don’t worry about it. Please be patient with your child, please have faith in them, and do not make that one of your concerns. They aren’t going to lose skills. It’s not going to happen. They’re like any other child on a break—when they go back to school they’ll start learning again.
Carol: Actually, I disagree. they are not like other children on a break; they’re better equipped for this. Autistics have incredibly long memories. We do not lose skills; we just don’t. They may go to ground for a while and we may behave as though we have lost skills, but then they will snap right back into place because that’s how our brains are built: they don’t prune neurons as effectively and efficiently the way non-autistic brains do, but one of the advantages of this is that it gives us the memories of elephants. They will not forget. It is not a thing.
The other thing you may not know, if you are not autistic yourself, is that you can calm down about your kid not getting an education. Even if your child doesn’t get a single bit of education from their teachers right now. Autistic people are amazing autodidacts. We teach ourselves just about anything we want to learn. Anything we think will be of value in our lives, and it generally turns out to be of value to us. This is something that I never worry about. Everything my father, who is also autistic, ever learned, he taught himself. Everything that I, who am autistic, learned, I started out by teaching myself. My son is exactly the same way. So I never worry. Of course he gets all the services and education I can get him, but our children will teach themselves things they want to know. It’s an autistic thing.
Anne: We also need to be mindful of folks who use assistive technology in their learning, and that’s an issue with all these various platforms: Are folks going to be able to access it? For better or for worse, many communities are using Google Classroom, and there are accessibility protocols with Google. We are not experts at accessibility but we know folks who are. There are resources available, and I wanted to let ou know that we are sensitive to that accessibility issue.
Shannon: And with that, I’m so grateful to you all, but we need to wrap up. Jill, is there anything you wanted to say to walk us out?
Jill: Thank you everyone on behalf of Magical Bridge, Thinking Person’s Guide to Autism, and Max for captioning—I hope your fingers aren’t too sore. We were not able to cover all the questions that came in so we are going to look at continue this webinar, and inviting other experts and panelists to come and join us. We’ll keep everyone here posted on future webinars. We are incredibly, incredibly grateful to have you join us. Clearly there is a need for this conversation; We just posted this yesterday, and hundreds of people signed up so there is a need out there, and we want to be really thoughtful in answering your questions. On behalf of the Magical Bridge Foundation: Be well, be safe, wash your hands. At Magical Bridge we say washing hands in magical. And we hope to see you again on our next webinar. Shannon?
Shannon: I don’t have anything else to add. Thank you everybody, and thank you Max for your amazing transcriptions. Bye everybody!
Jill: Have a magical day. Bye bye.
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