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Over the summer, Sherri Brady sent out messages to fellow parents of children with disabilities asking for help getting the word out about a virtual picnic she was organizing.

The answers she received back made it clear the families needed more than an online get-together.

Pandemic life had become overwhelming stressful, they told Brady, the Southern California representative for the Rett Syndrome Foundation. The parents were having a hard time keeping it together - supervising their kids' online school and therapies, dealing with meltdowns, struggling with financial problems from lost employment, worrying about their medically fragile kids falling ill, and mourning the loss of social activities and the outlet they provided.

"By the time I got to the third (parent), we were all in tears," said Brady, whose daughter, Lauren, 23, has Rett Syndrome, which affects brain development. "The floodgates just opened. My heart broke for them. I felt awful because there really wasn't anything I could do."

Throughout the pandemic, Sherri Brady has been caring for her daughter, Lauren, 23, who has a genetic disorder called Rett Syndrome. Photo courtesy of Sherri Brady.

The pandemic has been especially hard on families caring for children with disabilities. Since March many have had to contend with the loss of in-person support from teachers, aides, therapists, family members and home health workers. Some have gone months with no services at all.

Now, after almost 10 months of staying home, some of these families have settled into the new reality and are receiving better support. Some have found creative ways to adapt, parents and advocates said. But others, like the parents Brady talked to in July, are still struggling to get their children the help they need.

"We've been busier than ever," said Crystal Smith, program manager at the McClaney Family Resource Center in South Central Los Angeles, which provides guidance and support to families of children with disabilities. "Parents and caregivers are beyond stretched. There needs to be some sort of a reprieve."

How well families are doing depends a lot on their resources, both relational and financial, Smith said. Some have been able to lean on other family or community members to help take care of their children or provide assistance with basic needs. If they have internet and a computer at home, they can take advantage of therapy and other specialist appointments provided via telehealth.

Other families are forced to focus on meeting basic needs. Smith and her colleagues are spending a lot of time trying to provide these families with food and learning kits. They're hosting online workshops to help parents access services, offering support to caregivers who speak a language other than English.

To help families that are struggling, lawmakers need to provide greater financial support such as stimulus payments, food subsidies and rental relief, Smith said.

For school-age children, online classes have provided a semblance of routine, and school districts have improved their ability to adapt curriculums to virtual learning, advocates agreed. But many kids still don't receive the same amount of class time or learning help they got when classes were in person. Even for children attending schools that have resumed in-person classes, the experience has been mired by COVID-19 outbreaks, hybrid schedules, and the loss of socialization and physical interactions due to pandemic safety requirements, Brady said.

"We're still not back to normal," she said. "It's like you need your kid to go back to school both for yourself and your job, but also for your child - so they can get back to their regular schedule and services. But you have to balance that with, 'Are they going to be safe?'"

Melissa Alcala at her home in eastern Los Angeles in August. Photo by Martin do Nascimento / Resolve Magazine.

Improvements for some
Melissa Alcala of Lincoln Heights in Los Angeles had a difficult time getting services for her 3-year-old son, Gavin, when widespread lockdowns took effect in March. Gavin, who has a rare genetic disorder that has caused partial blindness, epilepsy and developmental delays, was scheduled to begin preschool at Albion Street Elementary in the spring. But Alcala wasn't able to enroll him in preschool until August, which meant that he lost out on months of schooling and supportive therapies.

Now, Gavin is attending Zoom classes every weekday morning for two hours, and receives physical, occupational, speech and vision therapy during that time as well. After regressing in his development over the spring and summer, Gavin's attention span and ability to communicate have improved, Alcala said. He also has a one-on-one aide to help him during class, although the assistance isn't very useful right now because it's virtual rather than hands-on, she added.

"I feel a sense of relief because there was so much uncertainty. There's still a bit of that now but I feel like we've finally moved forward," Alcala said. "Now I have to hold my breath for the next step."

That next step, she said, is safe, in-person classes.

Yvette Baptiste, executive director of the Eastern LA Family Resource Center in their offices in August. Photo by Martin do Nascimento / Resolve Magazine.

Fewer calls for assistance
For Yvette Baptiste, executive director of the Eastern LA Family Resource Center, a sign that the initial chaos of the pandemic has subsided is that she receives fewer phone calls. Earlier this year, her center got calls almost every day from parents whose children had lost services or were having a hard time getting a computer or navigating Zoom.

But there's another reason Baptiste and her colleagues may be receiving fewer calls. Young children aren't going to the doctor as frequently and fewer developmental delays and disabilities are being identified, Baptiste said.

She and other advocates are working with California's nonprofits that coordinate services for children with disabilities, known as regional centers, and the Department of Social Services to get input from families and better respond to their needs. Some rule changes from the department have made it easier for regional centers to provide families of young children with therapies and other supports they can't get through their schools, and also for vendors to assist parents with meeting basic needs such as obtaining groceries and learning supplies, she said.

For Brady and her daughter, Lauren, who live in Whittier, the pandemic has made life monotonous. Because Lauren is older, she no longer goes to school, but during non-pandemic times she participated in social and recreational activities, including horseback riding. Now, her life is mostly limited to walks through the neighborhood and going to the drive-thru for food, Brady said. Lauren's health condition means she is at higher risk of serious illness from COVID-19, her mother said.

For younger children with disabilities such as Rett Syndrome, Brady thinks the prolonged loss of regular in-person therapies, classroom activities and social opportunities may result in developmental regressions. Once in-person classes resume as normal, schools must be prepared to provide extra support to children with special needs, she added, and not expect to simply pick up where they left off

"It's going to take these kids a while to get back even to where they were, let alone starting to make progress and moving forward again," she said. "They should not be penalized for something they have absolutely no control over."
This story was produced in partnership with Resolve Magazine.

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Parents Caring for Children with Disabilities Have Some Advice

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Over the summer, Sherri Brady sent out messages to fellow parents of children with disabilities asking for help getting the word out about a virtual picnic she was organizing. The answers she received back made it clear the families needed more than an online get-together.

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Your one-stop resource for organizing and supporting self advocacy groups How can we help your self advocacy group? FEATURED RESOURCES The mission of Self Advocacy Resource and Technical Assistance Center (SARTAC) is to strengthen the self-advocacy movement by supporting self advocacy organizations to grow in diversity and leadership.

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Sex Talk for Self-Advocates Webinar #7: Marriage was recorded on August 12, 2020. Our expert hosts of sexuality educators and self-advocates invited a panel to discuss questions and topics related to marriage for individuals with intellectual and developmental disabilities. This webinar is part of an on-going series that addresses self-advocate questions about relationships and sexuality....

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Episode #6 Julian Wang Speaking Up, Speaking Out

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Listen to this episode from Love & Inclusion in the Real World on Spotify. Two moms. One dream. Love and Inclusion in the Real World. Julian Want is a local advocate and activist making a difference in Northern Colorado and the world.

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Episode #7: Speaking Up, Speaking Out Part 2 by Love & Inclusion in the Real World

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Episode #7: Speaking Up, Speaking Out Part 2 by Love & Inclusion in the Real World

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Podcasting for Beginners

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Hey there, podcast fans! We've produced a pair of podcasts at Buffer that we think you'll like. Learn the latest social media trends with The Science of Social Media and get an inside look at a DTC company built from scratch with Breaking Brand.

Content marketing comes in many different shapes and sizes. Creators like you have a lot of options: blog posts, social media updates, visuals, video, slide decks, and even more. You can even add podcasting to this mix.

Audio is being used in clever ways to fit into the content plans of some of the top forward-thinking websites and blogs. Tim Ferris—author of The Four-Hour Work Week— started a very popular podcast from his blog. Copyblogger runs their Lede podcast amid their traditional awesome marketing posts.

Podcasts are here to stay. Have you thought about starting your own? If so, here’s what I dug up for how to get going in this new content direction. Read on to learn the ABCs of podcasting for beginners.

How to overcome your fears of starting a podcast

I have always been podcast averse but never quite able to put my finger on why.  Then I read a pitch from Copyblogger for a podcast seminar. Demian Farnworth listed pretty much all my fears.

“My voice sounds weird.”
“The technical skills needed to record, upload, and store audio files are so far out of my wheelhouse.”

“The cost of quality equipment exceeds my small budget.”

“I want to pee my pants when I think of speaking in public.”

That’s me in a nutshell. I am not used to the sound of my own voice. I have no idea what’s involved in getting audio recorded and edited. I cringe at spending money on a microphone. And I’m rather uncomfortable speaking extemporaneously without the safety net of rough draft after rough draft after rough draft.

So what can someone like me—and maybe someone like you—do about it?

Reasons to jump headfirst into podcasting

When was the last time you listened to a podcast?

If it’s been awhile for you, chances are that someone you know has listened pretty recently. Nearly 51% of U.S. adults listen to podcasts.

The ubiquity of mobile devices and shifting content consumption habits represent a huge opportunity for the growth of podcasts.

Then there are the strategic reasons, too. Michael Wolf,  chief analyst of NextMarket Insights (and a notable podcaster), sees podcasting as a less crowded content channel than blogging. It has deeper engagement, as listeners tend to stay tuned in longer than with blog content. Podcasts work as multitasking options, too—you can listen to a podcast while you cook or while you drive. The same can’t be said for blog posts or any form of visual content.

Done right, there are many advantages to starting a podcast of your own—new audiences, less competition, and greater intimacy among them. And it takes less than you think to get started. Here’s all that’s needed for a beginner to create an amazing podcast.

Gear to get started

A quality podcast will mean quality equipment. Sure, you can scrape by with a bare minimum setup. You can record a podcast with nothing more than your smartphone, but it’ll sound like just that—a phone call recorded on a mobile device.

Have you heard of the MVP concept? It stands for Minimum Viable Product, and it is a startup-y term for pushing out the bare bones version of whatever you have, seeing if people enjoy it, then building it up from there. It’s a lean approach we love at Buffer, and I think it makes sense for getting started with podcasts, too.

Invest enough to create a quality podcast, see if people like it, then advance from there.

Step one: Buy a microphone.

Audio quality begins and ends with a microphone. The better microphone you buy, the sharper your podcast will sound. And audio quality reigns supreme when a person’s podcast choices include heavyweights like WNYC, NPR, and ESPN.

Fortunately, it won’t break the bank to get a good-enough microphone.

USB microphones—like the Snowball by Blue Microphones—start around $60. Most podcast equipment buying advice you’ll read about podcast microphones is to purchase a dynamic microphone that is front-firing with good rejection, meaning it picks up your voice clearly without the unwanted sounds of wherever you’re recording.

You can also pick up a headphone/microphone headset for around $30. This is a great option if you’ll be podcasting with cohosts or with guests (more on this below). If you opt for the standalone mic, you can always grab a separate set of headphones—even some you have lying around—and you might also consider buying or fashioning a microphone stand so that you’re comfortable for your podcast.

Before you press the record button, there are a couple final steps to prepare for your podcast.

1. Format: What’s your podcast going to look like?

2. Content: What’s your podcast going to say?

Podcasts can take many forms: one-man shows, cohosts, guests, call-in, etc. Metafilter founder Matt Haughey, who has put in hundreds of hours on podcasting, recommends that your show involve two or three hosts.

I listen to a lot of podcasts and the most typical format is 2 or 3 hosts and sometimes one guest. I’ve never subscribed to a single-person podcast before because I’ve yet to find a single-person-talking podcast that is interesting enough to stick with… Two or three people chattering to each other is the most common format but it’s possible to take it too far.

Stick to 2-3 people on your show.

Your best bet for a podcast that sounds organized and professional is to practice beforehand by figuring out what you’re going to say and coming up with an outline for your recording. You don’t have to go so far as to script things out. Just have a road map for where you’re headed and what you want to touch on.

Here’s a sample outline to consider, via Voices.com:

Show intro (who you are, what you’re going to talk about): 30-60 seconds

Intro music (repeat for each show so listeners identify the jingle with your show): 30-60 seconds

Topic 1: 3 minutes

Topic 2: 3 minutes

Interlude (music or break): 30 seconds

Topic 3: 3 minutes

Topic 4: 3 minutes

Closing remarks (thank audience, thank guests, talk about the next show): 2 minutes

Closing music (suggest same as Intro music jingle): 2 minutes

When it comes time to do the actual recording, the easiest solution might be a simple recorded Skype call. You can call up your co-host or guests via Skype, and record the call with special Skype recording software. When you’re finished, an editing application can help with the clean up, processing, music, and publication.

For Mac users, here is what you could use:

Record calls with Call Recorder for Skype ($15 to $30)

Edit with GarageBand ($0)

For PC users:

Record calls with Pamela ($0)

Edit with Audacity ($0)

(Note: If you have cohosts, you might consider each of you recording your end of the conversation and stitching the separate audio files together in post-production. This makes for cleaner audio.)

Your final audio can be uploaded to a number of different places. Here are a few of the big ones:

After you’ve finished recording, editing, and producing your podcast, you can upload it to hosting sites like Libsyn, Soundcloud, Anchor, and Transistor. They’ll generate your RSS feed for you, so you can submit it to Apple Podcasts, Spotify, and other players.

Here’s what’s involved in taking your podcast onto Apple Podcasts.

Step 1: Create an RSS feed for your podcasts. If you upload your files to a site like Libsyn, Anchor, or Transistor, the feed creation is done automatically for you.

Step 2: Log in to Apple Podcasts Connect. Using your Apple ID, log in at podcastsconnect.apple.com.

Step 3: Enter your feed URL and then click “Validate.” Apple will pull your podcast’s feed details (Title, Artwork, Description, etc.)

Step 4: Click submit.

Apple will give you a confirmation message, letting you know that there may be a review process for your podcast. This is typically within 24 to 48 hours but can take up to five days. You will receive an email letting you know if you’re approved. Three to five days after that, people can begin searching and finding your podcast in the Apple Podcasts app.

For promotion and sharing of your podcast, a lot will depend on the site where you upload. Places like Soundcloud, for instance, offer a robust set of sharing options built in. You can share directly to Twitter, Facebook, and more, and you can embed the audio directly into your blog posts.

Embedding audio is perhaps the best way to sync your podcast with your blog content. Many top blogs use their podcast as an additional blog post, adding the audio directly into the body of the post and providing either a full transcript of the podcast or a list of topics and resources covered in the podcast. (Complete transcripts can be helpful for SEO and accessibility.)

The ideal everything for podcasts

We get quite a kick out of learning the ideal length and frequency for a number of different types of content, and podcasting is no exception. There’s less research out there about podcasts, so what I couldn’t find, I ran the numbers myself.

Ideal length of a podcast: 22 minutes

Stitcher, an online radio and podcast site, says that the average listener stays connected for 22 minutes. The science of attention spans supports this number, too. TED Talks have an 18-minute maximum because scientists believe we can’t hold our attention on a single presenter for any longer before we check out.

Best day to post a podcast: Tuesday

To find this conclusion, I pulled the numbers for the Top 25 podcasts in the iTunes store and noted their publishing schedule and the frequency with which they published new podcasts. There was a large variety of posting schedule among the Top 25, but a small trend did begin to develop. Sixty percent of podcasts with a regular schedule posted early in the week, before Wednesday. The most common single day was Tuesday (which just so happens to be the day when new music hits the iTunes store, presumably meaning more visits who might see a new podcast).

Best frequency to post a podcast: Weekly

Forty percent of the Top 25 podcasts with a regular posting schedule publish once per week. The next most common frequency is twice per week. Of the Top 25, only three podcasts did not have a discernible schedule to their posting. It seems that some publishing rhythm is preferred over no rhythm.

Podcasts to learn from

We love taking inspiration from others and learning how to best tackle new media like podcasts. As I mentioned up above, several key sites are exploring podcasts, and they’re doing so in really interesting ways. Here is a breakdown of five of the top ones and how they do podcasts.

Tim Ferriss – Four Hour Work-Week blog

Average length of the past five podcasts: 48 minutes (Ferris sprinkles in short “audio essays” of 10 to 20 minutes alongside his longer podcasts of over an hour)

Podcast frequency: Twice per week

Embedded audio: Libsyn

On iTunes? Yes

Full transcript in post: No

Show notes: Yes

Examples:

The Tim Ferriss Show, Episode 12: Dr. Rhonda Patrick on Life Extension, Performance, and Much More

The Tim Ferriss Show, Episode 10: Brian Koppelman, Co-writer/Producer of Rounders, The Illusionist, Ocean’s Thirteen

Copyblogger – The Lede podcast

Average length of the past five podcasts: 24 minutes

Podcast frequency: Weekly

Embedded audio: Flash player

On iTunes? Yes

Transcript in post: Yes

Show notes: Yes

Examples:

Why You Should Curate Content (And How to Do It Right)

How Freaks and Misfits Can Succeed in Business: A Conversation with Chris Brogan

Fizzle

Average length of the past five podcasts: 44 minutes

Podcast frequency: Weekly

Embedded audio: Libsyn

On iTunes? Yes

Transcript in post: No

Show notes: Yes

Examples:

Value, Volume, Sales Help or Product Dev? 5 Tough Listener Questions (FS058)

5 Ways to Increase Traffic to Your Site (Plus SEO Insights, FS057)

Convince and Convert – Social Pros podcast

Average length of the past five podcasts: 48 minutes

Podcast frequency: Weekly

Embedded audio: Flash player

On iTunes? Yes

Transcript in post: No

Show notes: Yes

Examples:

How Customer Service can Devastate Your Social Media Plans

How Groupon Integrates Social Media and Customer Experience

Average length of the past five podcasts: 40 minutes

Podcast frequency: Weekly

Embedded audio: PowerPress player

On iTunes? Yes

Transcript in post: No

Show notes: Yes

Examples:

Twitter Cards for Blogs: How to Set Them Up

Marketing Instagram Style: What Marketers Need to Know

Recap

At the top of the post I mentioned a few of the fears that stand in my way for thinking about podcasting.

“My voice sounds weird.” “I hate public speaking.” Many of the best podcasters began with the same fears, and once you hear the wide variety of voices in podcasts, you’ll feel okay, too, about starting your own.

“I don’t have the technical skills needed to record.” Technical skills are easier and easier to come by nowadays with the technology available. And there’s really not much editing to be done with a simple podcast.

“The cost of quality equipment exceeds my small budget.” Forty dollars should be within most everyone’s budgt, and that’s all you may need to get a viable microphone set up and begin podcasting.

Hopefully you’re feeling better about those fears now.

What questions do you have about podcasting? If you’ve already dabbled with podcasts, what lessons have you learned along the way? What podcasts do you like the best? I’d love to hear your thoughts.

Image credit: M. Keefe

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LGBT Support Group

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Monthly - Second Wednesday, 6 p.m. to 8 p.m.

Contact: Jenny Arellano (SC), 213.252.6004 or jsarellano@lanterman.org

PLEASE NOTE THE GROUP IS CURRENTLY MEETING ON ZOOM

For more info and to receive the Zoom link, contact:

Joe Perales, 213.252.4986, jperales@lanterman.org

Dates

Wednesday, October 14, 2020 at 6:00 pm to 8:00 pm .

Wednesday, November 11, 2020 at 6:00 pm to 8:00 pm .

Wednesday, December 9, 2020 at 6:00 pm to 8:00 pm .

Wednesday, January 13, 2021 at 6:00 pm to 8:00 pm .

Wednesday, February 10, 2021 at 6:00 pm to 8:00 pm .

Wednesday, March 10, 2021 at 6:00 pm to 8:00 pm .

Wednesday, April 14, 2021 at 6:00 pm to 8:00 pm .

Wednesday, May 12, 2021 at 6:00 pm to 8:00 pm .

Wednesday, June 9, 2021 at 6:00 pm to 8:00 pm .

Wednesday, July 14, 2021 at 6:00 pm to 8:00 pm .

Wednesday, August 11, 2021 at 6:00 pm to 8:00 pm .

Wednesday, September 8, 2021 at 6:00 pm to 8:00 pm .

Wednesday, October 13, 2021 at 6:00 pm to 8:00 pm .

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Tips and Strategies for Successful Online Meetings

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Tips and Strategies for Successful Online Meetings

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This handy resource was created by the Alliance - Self-Advocacy Alliance for Change. It is called Self-Advocacy Groups Taking Care of Business: Tips and Strategies for Successful Online Meetings. It provides basic instructions for organizing meetings online.

The Alliance is a statewide team of self-advocacy groups in Illinois. They work together to make life better in our communities and to work to make services better in our state.

Download Files for this Resource

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Tips and Strategies for Successful Online Meetings - Self Advocacy Info

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This handy resource was created by the Alliance - Self-Advocacy Alliance for Change. It is called Self-Advocacy Groups Taking Care of Business: Tips and Strategies for Successful Online Meetings. It provides basic instructions for organizing meetings online. The Alliance is a statewide team of self-advocacy groups in Illinois.

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tutorial on lighting and getting comfortable with video camera

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HOW TO LOOK BETTER ON ZOOM [ How to Light & Angle Your Screen to Look Your Best]

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19-year-old Lauren Brady of Whittier is a pretty typical teenager. She loves Justin Bieber, stayed up until 3 a.m. at her high school grad night, and, according to her mom, Sherri, has a "certain standard" when it comes to looking her best. Diagnosed at age 3 with Rett Syndrome, a rare neurological disorder that affects brain development and causes coordination and speech impediments, Lauren requires a wheelchair to get around, can't speak, and needs a feeding tube. There are many moving parts to her comprehensive medical home that Sherri , who serves as Lauren's primary caregiver, works with, often switching between 'mom' and 'educator/advocate' as Rett is still fairly foreign to many. Sherri's goal is to stack Lauren's care team with professionals who don't view Rett as a hindrance or impossibility, but who are willing to learn from and work with the two of them.

What are the components of Lauren's current medical home?

First and foremost, a lot of my knowledge comes from other families of children and adults with Rett Syndrome. These families are going to be your best resource, and they're #1 on Lauren's team. Your own family and friends can help, but they have their limitations since they're not doing what other parents (of children with disabilities) are doing.

As far as doctors, Lauren is seen at the Children's Hospital Los Angeles Rett Syndrome Clinic -our touchdown place for all things Rett. It's great to have a team that actually knows what we need. To this very day, I still go to appointments where no one's heard of Rett. For example, I had to take Lauren to the emergency room the other night, and here I am trying to manage her care and pain while handing out brochures on Rett all at the same time. I'm often wearing two hats at once.

Lauren also sees a GI specialist and neurologist on a regular basis-those have been her mainstays. She's always had a pediatrician, but we only go if she has a simple cold or I need paperwork for school.

At the Adult Care Transition (ACT) Clinic Lauren attends, they focus on individuals with pediatric disorders who are becoming adults and need more specialized care. She's recently started seeing a meds peds doctor here, or a practitioner who's trained in general medicine and pediatrics. I think it's going to work out great. The few people who tend to know a lot about Rett are pediatricians, and the chances of a doctor seeing an adult patient with Rett drops drastically. Even as they get older, a lot of their care is still more kid-like and kid-focused, but you still have to think about all the adult things you weren't thinking about before. There's been a few female adult issues that have come up, and it's an area where Lauren was starting to have some concerns. It's great to have people around at the ACT Clinic that are more trained in this area and know how to troubleshoot and identify solutions.

When she was younger, Lauren had some vision issues and needed to wear glasses. While that issue kind of resolved itself, I still take her to the eye doctor here and there, just to make sure. She also goes to the dentist twice a year. The very first dentist I took her to only looked at whatever teeth happened to be showing and said, "she looks good to me!" Needless to say, we never went back to her. I was able to find a doctor who specializes in children with special needs through other families, and we've been going to him ever sense. When Lauren needed a root canal, I was lucky enough to be able to take her to Children's Hospital Los Angeles. But, if we fast forward three years and that ever happened again, I'm not sure where I'd take her. This is something I'm hoping the med peds doctor will help us coordinate.

Lauren is fairly active with physical therapy, and her current therapist sees the growth that's occurred in the past year. She's open to trying new things with Lauren, and Lauren is gaining some skills back. While she isn't able to walk independently, she can stand, bear weight, and walk with assistance-a huge help when it comes to me transporting her. Do I hope she'll walk independently? Yes. Will I ever give up on preparing her body for that? No. With all the research that's going on, something could come down the pipe tomorrow, and I want her body to be at its most optimal ability.

For Lauren and all girls with Rett, it takes a special kind of occupational therapist who is willing to think outside the box. There seems to be an "all or nothing mentality:" if you can't brush your teeth or comb your hair independently, you're not going to benefit from therapy. However, some people can do these things if you make adaptations. Pretty much everything that was adapted for Lauren during K-12 was adapted by me, and I think a lot of it could work for other girls.

How do you work with Lauren's team to coordinate her care?

We've been trying to figure out why she's been having intermittent GI issues and pain for over a year. Just when we think we've got it under control, it comes back. Although it seems to be a GI issue, her neurologist and med peds doctor have both had some helpful input and suggestions. I try to keep all of her doctors aware of what's going on, and I put on my basic care coordinator hat to make sure everyone is up to speed with copies of her tests. It's hard and it's a lot, but I feel like it's the only way we're going to get answers and I'm determined to get to the bottom of the issue.

What does a typical day look like for Lauren?

Since Lauren needs assistance with all her living skills, the day starts with a transition from bed to bathroom. Either before or after this, I give her a G tube feed. Next, we move on to dressing, hair, jewelry, and makeup. Lauren has certain standards, and it's important to me that she look her best-she has enough challenges already. I want to help her put her best foot forward and for people to see her for who she is.

On weekdays, she'll typically go to her transition program, which is through the Whittier School District. Their end goal is for everyone to have a job, so they go out into the community and talk about things like money and spending. I know Lauren understands money, but because of her physical limitations, she'll always need assistance since she can't take bills out of her bag herself. I'm glad she's able to have this experience since she loves the freedom of going places without me-she's a very typical teen in that way!

Lauren has an outside augmentative and alternative communication (AAC) person that comes in to assist her with alternative ways of communication. This person also helps train teachers and staff to support Lauren in more fully participating in things from a communication standpoint.

On the weekends, we usually hang out with friends, go to Disneyland, a pool party, a picnic, the movies, or the mall. We also go to the Rett Clinic once a month to volunteer, and they learn a lot from Lauren being there.

How were you able to qualify to be Lauren's paid caregiver through In Home Supportive Services (IHSS), and what obstacles do families face as they're trying to qualify?

Many families are prevented from tapping into beneficial resources because they don't qualify financially. I understand the need for income guidelines, but they're not always reasonable or fair. In most cases, they really don't take into consideration the added expense that comes with having a child with special needs.

IHSS has an income component since the child must be receiving Medi-Cal in order to qualify. Because of our particular situation, Lauren qualified for Supplemental Security Income as a child and therefore Medi-Cal, but that's not the case for most. Luckily, some children are able to get Medi-Cal through the Institutional Deeming program at Regional Centers, but lots of service coordinators don't bother to tell families about either program or the child doesn't receive the needed services from Regional Center to qualify.

Those that qualify for IHSS are given a certain amount of hours based on their need so that they can hire caregivers. It's harder for children to qualify because social workers will often argue that we (parents) would need to care for our children anyway. The key is showing that the level of care is greater than a typical child. That may sound simple and obvious, but it is often quite a challenge. If it is proven, as in Lauren's case, that the individual not only has needs in the designated areas but also has the physical ability to put themselves in harms way, then they qualify for Protective Supervision and qualify for the maximum number of hours (283/month).

IHSS has often been the target of budget cuts, and they have threatened to no longer allow parents to be caregivers. Luckily this hasn't happened, and as of this year the amount earned has increased due to the rise in minimum wage and the law requiring caregivers to qualify for overtime.

There are still lots of problems with the program, but I am extremely grateful for the fact that it exists in any form because it's my understanding that most states don't have anything similar, and the ones that do usually don't allow parents to be caregivers.

As Lauren's primary caregiver, what kind of self-care do you practice to ensure that you're at your best for her?

My friends sometimes push me to take time away from Lauren, but I really enjoy the time I spend with her! I'm extremely lucky in a lot of different ways: since she doesn't have many health issues, it allows us to do social things. I know so many families that are in and out of the hospital because their child is having hundreds of seizures a day. If Lauren's life and care were more hectic, I may need a break from that. The older she gets, the more I enjoy hanging out with her as well. We're not going to see Barney anymore-we're going to concerts and it's somebody I want to see too! Also, a lot of people don't understand that it's actually not relaxing for me to be away from her because then I worry.

What advice would you give to a family who just received a diagnosis where they know their child will require complex care?

Follow your gut-you know your child best. Don't take "no" or "I don't know" for an answer. Surround yourself with a team. My goal is to always find people who are willing to learn, acknowledge that I do know what I'm talking about, and work with us. I don't want people to say, "well, she has Rett, so we can't do XYZ."

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Living With Rett Syndrome: A Glimpse Into Lauren's Medical Home, Day-To-Day Life

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19-year-old Lauren Brady of Whittier is a pretty typical teenager. She loves Justin Bieber, stayed up until 3 a.m. at her high school grad night, and, according to her mom, Sherri, has a "certain standard" when it comes to looking her best.

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Rett syndrome is a rare, but severe brain disorder that affects primarily girls, such as Sherri Brady's daughter, Lauren, who is a long-time user of the Convaid Rodeo, a tilt-in-space wheelchair.

Convaid | R82 has watched Lauren Brady grow up. In fact, she was how the company came to know mom Sherri Brady, her daughter's biggest advocate and organizer of the 15th annual Rett Organization SoCal Strollathon that is held at Whittier High School every year.

Tomorrow, Saturday, October 21, 2017, we will join Sherri, Lauren from 12-4PM where will share in fun, games, music, food and other festivities. As we do every year, Convaid | R82 will present a Certificate of Donation for a Convaid wheelchair during the event, in keeping with a tradition that is now in its second decade.

Rett syndrome is rarely seen in boys, but little girls are discovered with the condition within the first two years of life in 1 of every 10,000 to 23,000 female births.

The SoCal Rett Strollathon is the signature event of the International Rett Syndrome Foundation (IRSF) that raises money for research and public awareness building. All are welcome to attend the SoCal Strollathon at the campus of Whittier High School, 12417 E. Philadelphia Street, Whittier, CA 90601.

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Annual SoCal Rett Strollathon and Family Picnic to be Held this Weekend - Convaid

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Rett syndrome is a rare, but severe brain disorder that affects primarily girls, such as Sherri Brady's daughter, Lauren, who is a long-time user of the Convaid Rodeo, a tilt-in-space wheelchair. Convaid | R82 has watched Lauren Brady grow up. In fact, she was how the company came to know mom Sherri Brady, her daughter's ...