As many readers are aware, I migrated my free newsletter to a different platform last year. Because people still find and follow me on Substack, I’m reaching out to remind you that my entire newsletter archive (including today’s most recent issue) is available (and searchable) through the link below:

Newsletter Archive

This week, I’m banging the drum loudly about proposed cuts to Medicaid, special education, medical research, and other important governmental supports here in the U.S. Lawmakers need to hear real stories from real people about why these programs are so vital to families. Check out the link below with more specific encouragement…plus other great resources for happier topics that matter to people with disabilities:

Help & Hearts

Sending you warm wishes for love, hope, and lots of chocolate this Valentine’s Day.

Want to make sure you’re on my free newsletter mailing list? Click below…and scroll to the bottom of the page. Learn to bloom!

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I shared the message below yesterday with subscribers of my e-newsletter, Another Normal. As you probably know, it was started a few years ago on Substack and is now distributed through another platform. (You can sign up for your copy here.)

If you missed yesterday’s message, I encourage you to read this to the end. I’m pretty confident you’ll find something of value for yourself or someone you care for or about.

Feel free to share this post with other people in your life, along with my website. I love hearing from families and working with parents to help them “embrace another normal” and build joy-filled, rewarding, and peaceful lives — no matter how big their challenges.

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If you want to learn more about how private coaching with me can help, please reach out to schedule a complementary call. Coaching isn’t about changing the unchangeable, but instead aims to help you explore what matters to you personally and professionally…and how to have more of it, regardless of your circumstances or special parenting responsibilities.

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Did you know that Saturday, Sept. 21, is World Peace Day?

I’ve learned over the years that we each have the power to create peace in our lives – and in the world around us – no matter what challenges we face. And although it can be annoying to hear about peace, self-care, and "finding a minute of calm," even a few peaceful minutes can make a big difference in a tough day or long week.  If you know, you know.

So whether you’re taking care of others this weekend or spending time on yourself (is that even possible?!?), I hope your World Peace Day is filled with multiple moments of peace and love.

Here are a 10 things to try and also teach your children about that will help towards this goal:

1. Choose being happy over being right.

2. Look for reasons to smile. 

3. Decline the drama. It drains us and generally adds no value to life.

4. Listen to understand, not to respond.

5. Get organized. It just feels good.

6. Reduce procrastination. Waiting until the last minute adds stress.

7. Stop criticizing yourself. If you worry about being a good parent, chances are you probably already are one.

8. Stop trying to control everything. It weakens our relationships with others and rarely helps us feel better.

9. Get up early. I used to be a night owl, but now my favorite time of day is sunrise. (You’ll thank me later.)

10. Be yourself. Anything else is really exhausting and requires too much energy.

Our kids, families, co-workers, and communities need us to help create and sustain peace – in big and small ways.

What can you do to get on board the peace train?

Hope you enjoy the ride!

In between newsletter issues and very infrequent Substack posts, I share insights, interviews, and other info on Facebook, Instagram, and LinkedIn. Please follow me on social media and suggest folks I should follow to learn from and connect with.

Hello readers,

As many of you know, I migrated my weekly e-newsletter to a different platform back in February. This was an attempt to simplify my life, which we all need to shoot for at times. It worked in many ways — and I’m happy with the change. I hope you are, too.

In addition to my newsletter and other free offerings, I now support parents of young people with disabilities through my website, private coaching, resilience book, and new online course — which are all hosted outside of Substack. I really love the work I do and who I do it with and for.

Since new folks are joining me on Substack everyday, I wanted to pop in here, say “hello and welcome,” and explain a bit more about “embracing another normal.” This recent podcast interview offers an inside look at why I’ve embarked on this next phase of my parenting and coaching journey. It’s an intimate conversation between two moms of two men with two different disabilities — talking about all sorts of honest, hard stuff. I hope you’ll take a listen and glean something good from it.

Listen Now

I’ve been interviewed a lot over the past few months about resilience, parenting, coaching and more, and I truly love these discussions. I try to share them in my free newsletter to help other parents and professionals who work with families like mine. My newsletter shares more supportive information and resources on a variety of subjects. What specifically do you want me to cover more of in the months ahead?

A couple of other quick requests…

1. If you know someone who might benefit from the information I share and work that I do, can you please share this post or my website? Connecting with like-minded folks is so important to me, and I appreciate your help finding them.

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2. If you want to learn more about how private coaching can help you create a more rewarding life, no matter what your challenges, please reach out to schedule a complementary call with me. Coaching isn’t about changing the unchangeable, but instead aims to help you explore what matters and how to have more of it, regardless of your circumstances or special parenting responsibilities.

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3. Search my complete newsletter archive here for more info on all things related to parenting young people with complex needs. My archive on Substack only goes through February 2024. I’ve shared lots of good resources since then, but it’s all housed now on my website archive. Enjoy!

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4. In between newsletter issues, I share insights, interviews, and other info on Facebook, Instagram, and LinkedIn. Please follow me on social media and suggest folks I should follow to learn from and connect with.

Another Normal is a free e-newsletter for parents, caregivers and others committed to helping young adults with disabilities bloom and grow.  Thanks for being here.

Recently, I’ve been reading a book on “the art and science of getting happier” called Build the Life You Want, by Arthur Brooks and Oprah Winfrey. It’s chock full of good learnings, including these 10 quotes that are especially relevant to raising young people with disabilities:

1. Scholars have shown that when people reflect on difficult experiences with the explicit goal of finding meaning and improving themselves, they tend to give better advice, make better decisions, and solve problems more effectively.

2. Negative emotions help us to learn valuable lessons so we don’t make mistakes again and again.

3. While you may not be able to will your feelings to improve, you can choose how you talk to and treat others, which will give your loved ones more energy to help you when you need it.

4. A life with close friends can be happy even when many other things are going wrong. A life without close friends is like a house in the winter (in Massachusetts) without heat.

5. Researchers have shown that asking people to think of happy things from their past can improve their mood. You can reap similar benefits in a systematic way by keeping a journal of happy memories and reviewing it when you are down or out of control.

6. Our lives are spent in connection — to other people, to our work, to nature and the divine — and the more we do to improve those connections, the better off we are.

7. Committing yourself to honesty starts with a commitment to be honest with yourself, and an effort to seek out and accept complete honesty from others, especially loved ones.

8. When your ideas are threatened and you feel defensive, actively reject your instinct to defend yourself and become more open instead.

9. Don’t just spend time away from work; spend it with people who have no connection to your work. (If your job is taking care of your family, this principle still applies. You need to have relationships with people who see you as more than a provider and caretaker.)

10. Optimism is the belief that things will turn out all right; hope makes no such assumption but is a conviction that one can act to make things better in some way.

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The next step.

After nearly three years and 117 free newsletters filled with information and resources to help young people with disabilities and those who support them in life, today is my final issue on Substack. You can still search the archive to gather info on topics of interest. But beginning later this month, my newsletters will be hosted on a different publishing platform. I’m moving ahead with happiness and optimism for whatever lies ahead. I hope you’ll join me on the journey.

If you no longer want to receive my free newsletter or future communications from me, you can always unsubscribe at the bottom of this email. Otherwise, I’ll share more helpful info soon through an updated format. New look and feel. Same valuable stuff. You can continue to reach out to me here. I love connecting with readers and try to reply quickly to all messages received.

As always, thanks for being here…and happy February. Enjoy the leap!

To quote Oprah Winfrey, “A teacher is not the one who knows everything. It’s simply the one who shares what they’ve learned.”

In the spirit of teaching, I’ve decided to share the story below about our son, Andrew, which taught me a thing or two about the power and importance of passion and persistence. I hope you’ll learn something, as well.

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During the height of the pandemic, our then 25-year-old son moved back home to live with us for what turned out to be 15 months. Several years earlier, he’d moved into his own apartment and was learning to manage his life, friends, disabilities, caregivers, and responsibilities. Unfortunately, Covid-19 messed that up completely.

After being home again with us for just a couple weeks, it became clear that Andrew really missed his independence, friends, and autonomy. He longed for the comfort of a daily routine filled with the things he loves and is passionate about. Like many other parents during the pandemic, we missed seeing our son happy, fulfilled, and growing.

To address these challenges, we encouraged Andrew to pursue his interest in animation. This was something he could do virtually, but not without assistance. So, in addition to all the hand washing, isolating, and constant second-guessing, we spent countless hours helping Andrew bring to life his ideas for an animated film about a young boy with disabilities.

To be completely honest, I didn’t enjoy this at all. I knew it mattered to Andrew, I’m just not very interested in animation. I’m also not very creative, and I had a lot on my plate during that time. Managing through Covid felt hard enough. Being Andrew’s animation co-pilot, project manager, teacher, and cheerleader felt extra heavy. But we persevered.

Eventually, I discovered that working on this project, learning new things, and creating something he could be proud of made Andrew feel really good during a time that was really bad. In the absence of friends, control over his schedule and routine, and even just a sense of what comes next, Andrew’s accomplishment with this project took on monumental significance.

Here’s the first very rough video he created:

Through this experience, I discovered our son’s drive and ability to persevere are even greater than his disabilities. I also learned that I have more patience than I often give myself credit for. Together, we affirmed the importance of pushing ourselves and establishing high expectations for others. Andrew also realized how important it is to reach for your dreams.

Perhaps this is why he shared the video last fall with professional animators at Connecticut Public Broadcasting, where he now works. Over time, they began to collaborate on what Andrew now refers to as a “program extension” that features even more of Andrew’s voice, personality, and life experience. They are currently exploring how it can be used in schools, libraries, and any place children learn about people with disabilities:

Perhaps there’s something your child or the young people you support are passionate about…something they’re more interested in than you are, but that you can learn to love (or at least love helping them with). Perhaps there are fun and interesting ways you can learn to support their dreams and persistence.

Since the teacher in me enjoys learning, too, please let me know about your experiences on this topic. As Oprah reminds us, teachers share what they learn — so thanks for teaching me, too.

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Making a list and checking it twice.

My new self-paced online program for parents is almost ready…and I need parents to test it. Please let me know below if you can help. I’ll share details as soon as they’re available!

Online Course

Another Normal is a newsletter dedicated to supporting families with disabilities. Beginning next month, it will look somewhat different and come from a new e-mail address/publishing platform. It will continue to share helpful resources and information. I love hearing from readers about what interests you.

If this e-mail was forwarded to you, please subscribe below. As always, thanks for being here.

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Over the past year, I’ve been repeatedly reminded that it’s really important to experience connection and accomplishment, regardless of one’s ability. 

Learning new things, expanding our perspectives, and surprising ourselves by what we can achieve are all important themes in my book Embracing Another Normal. I’m excited to do more of each in 2024.

After careful thought and consideration, I’ve decided to undertake this work outside of the Substack platform. I’ve been considering this for awhile, and recent news like this made my decision easier.

Beginning next month, this newsletter will be e-mailed to you through another e-mail platform. It will look slightly different but still contain the same helpful content on topics that matter to you. My goal remains the same as it’s always been: to share information and resources that help parents navigate raising young people with disabilities. To that end, I will also begin hosting a digital program for parents through this new platform very soon. More on that shortly!

Please reach out here to let me know what you’re interested in learning about as the year unfolds.

You can always unsubscribe at the bottom of this e-mail if you no longer want to receive my newsletter or other communications from me. No worries whatsoever (although I hope you won’t).

Enjoy your holiday today, and thanks for being here.

Penny for your thoughts.

I love and appreciate your enthusiastic emails about my new book.

Won’t you please take two minutes to submit an Amazon review below? It’s quick and easy and really helps other readers find us on the internet.

SUBMIT REVIEW

If you’re anything like me, you’ve already got a long list of aspirations for 2024. If it includes more learning and growth for yourself and those you care for, please consider the following:

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Starting tonight.

Beginning January 8 at 6:30pm, my good friend and special needs planning expert, Michael Beloff, is offering a series of free Zoom webinars for parents of young people with disabilities. Our family has benefitted greatly from Michael’s guidance and expertise over the years. I can’t encourage you enough to avail yourself to his experience as a special needs parent and financial advisor.

Check out the full schedule here and start learning tonight.

No place like home.

My friends at Together For Choice are also starting the new year off learning and teaching. This powerful advocacy group advances the rights of individuals with intellectual and developmental disabilities (I/DD) to live, work and thrive in a community or setting of their choice. TFC has been immensely helpful to our family and many others.

Join them on January 11 from 1-2pm EST for an open forum and Q&A to address and share ideas on living/housing options for individuals with intellectual and developmental disabilities (I/DD). This virtual event is sure to offer helpful advice and collaborative discussion on a topic that often challenges young people with disabilities and their families. Register here.

Special dads.

Eric Jorgensen has also been an amazing source of support to me over the past year. His Substack newsletter is chock-full of well-researched and actionable guidance on long-term planning for children with disabilities. This comprehensive post on “how everything works” is a powerful example of the truly exceptional resources Eric provides.

You can check out the full archive of newsletter topics here and listen to Eric on the Dad to Dad podcast. It’s part of the Special Fathers Network, a mentoring program for fathers raising children with special needs. Learn more here.

Embracing Another Normal.

Delighted to share that my new book with resilience expert Dr. Linda Hoopes is being well-received by readers. So honored to get this review from a mom in the U.K.:

This is the book I longed for when my son, James, was small. James is autistic and our life has certainly not been what I had excitedly anticipated when I fell pregnant. Navigating life with a child who has complex needs felt so far from normal. This book helps you reframe your thoughts as well as delivering practical advice around curating your ‘normal’. At last - a book written by two incredible women who truly ‘get it’. If you have a child with additional needs, or you want to support someone who has, DO buy this book - it’s a game changer.

Building community and resilience.

If you live near Fairfield, Connecticut, I hope you’ll join me at the public library on January 25 from 6:30-8pm EST for a free event on “Building Resilience in the New Year and Beyond.” Hosted by our friends at Team Woofgang & Co., it promises to be a wonderful evening. Register here please, as space is limited.

I also will be conducting a virtual webinar on this topic from 6-7pm EST on Tuesday, January 30, hosted by Chapel Haven Schleifer Center, Inc. You can learn more and register here.

Speaking of books.

Click here to receive my top five reading recommendations for the new year. I hope these books help you as much as they’ve helped me.

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Another Normal is a newsletter dedicated to supporting families with disabilities. If this e-mail was forwarded to you, please subscribe below. You can also hit the “heart” button at the bottom of this e-mail 🖤 to help others find us on the internet.

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Like many families, ours gathered together in December to “celebrate the season,” sing and dance daily, and stay up way too late most nights laughing, crying and catching up on each other’s lives. We also irritated one another and had our feelings hurt for various reasons…and I even cut Andrew’s face when shaving him (not once, but twice).

Just like the wonderful people in my family, the holidays were real.

I so hope the new year will be, too.

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The passage below from The Velveteen Rabbit reminds us of why real is good. I see something new every time I read it. The beloved children’s book by Margery Williams Bianco was made into a new AppleTV special, which Andrew and I really enjoyed last week:

‘Real isn't how you are made,' said the Skin Horse. 'It's a thing that happens to you. When a child loves you for a long, long time, not just to play with, but REALLY loves you, then you become Real.'

'Does it hurt?' asked the Rabbit.

'Sometimes,' said the Skin Horse, for he was always truthful. 'When you are Real you don't mind being hurt.'

'Does it happen all at once, like being wound up,' he asked, 'or bit by bit?'

'It doesn't happen all at once,' said the Skin Horse. 'You become. It takes a long time. That's why it doesn't happen often to people who break easily, or have sharp edges, or who have to be carefully kept. Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in the joints and very shabby. But these things don't matter at all, because once you are Real you can't be ugly, except to people who don't understand.’

Wishing you a new year filled with everything real — plus the time, energy and support to enjoy and learn from it all, including each other.

I hope that in this year to come, you make mistakes. Because if you are making mistakes, then you are making new things, trying new things, learning, living, pushing yourself, changing yourself, changing your world. —Neil Gaiman

Another Normal is an e-newsletter of information and resources for parents, caregivers and others committed to helping young adults with disabilities bloom and grow.  If this copy was forwarded to you, sign-up for your own copy below. Welcome to our community.

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With Christmas just around the corner, I want to address something that can’t be wrapped in a bow or purchased online.

As I see it, prioritizing our own health and well-being is one of the greatest gifts parents can give our children. This is especially important if we care for a child with disabilities, since research shows the stress of caregiving often negatively effects our physical, emotional, and mental health.

In today’s newsletter, I want to encourage readers to make time for yourselves and focus on getting and staying healthy, especially if this is hard for you to do. Please read on and keep an open mind. This really is important.

As the mother of three grown “kids” in their 20s, I wish I’d started sooner to form good habits and pay closer attention to this aspect of parenting. Sure, I stayed active and busy — but I didn’t prioritize cardiovascular exercise like I should have. And I treated sleep like a “nice to have,” rather than something that should be preserved and protected. I focused on doing everything instead of figuring out how to “get it done” with the help of others. I tried to pretend it was easy. Maybe you do, too.

Thankfully, it’s never too late to change our behavior. So here’s some encouragement to help you do so.

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Peter Attia, M.D. and author of the book, Outlive, urges us to pay attention to the role that nutrition, exercise, and sleep play in the quality and quantity of our lives. Even if you’re “starting from scratch” to care about these things, he says, you can take small steps that produce big results. That’s especially good news for parents of complex and/or time-consuming kids.

I used to prioritize nutrition over everything else, but I now consider exercise to be the most potent longevity “drug” in our arsenal, in terms of lifespan and healthspan. The data are unambiguous: exercise not only delays actual death but also prevents both cognitive and physical decline, better than any other intervention. We also tend to feel better when we exercise, so it probably has some harder-to-measure effect on emotional health as well.

—Peter Attia, M.D.

Why does this matter to me now?

For starters, I feel myself getting older. And after schlepping through New York City last weekend with our adult son and his very heavy wheelchair, I’m very aware that it’s getting harder for me to schlep. I want to keep doing it for a long time to come, though, and Andrew’s mobility challenges actually require that of us as parents. Physical and mental fitness are not optional. So how do we achieve this?

We can start by setting simple goals and developing routines to help achieve them. (Please don’t confuse this with New Year’s resolutions, which I despise.) For me, this means getting my heart rate up a few more times a week than I currently do and getting to bed earlier whenever I can. Both are easier to accomplish now that our adult kids don’t live at home; however, even parents of young children can prioritize these things…as can parents of adult kids with disabilities.

Can you and your daughter/son take a walk or run together periodically? Can you arrange for help with your caregiving responsibilities so “breaking a sweat” is something you do more regularly instead of just dream about doing? Can you turn off technology in advance of bedtime to help quiet your mind and body? Can you imagine how good it will feel to sleep more soundly, exercise more effortlessly, and maybe even reduce the things on your “must do” list?

I still plan to enjoy too many Christmas cookies this month, but I’m also excited to commit to a few new habits that will help contribute to a peaceful, healthy, and fulfilling new year. Living longer and better is worth working for, don’t you think?

Wishing you a rewarding end to 2023 –- and a great start to the coming year. As always, thanks for being here.

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Balancing needs.

My new book, Embracing Another Normal, addresses the challenge of balancing the needs of our children with our own physical needs, along with more emotional needs for things like peace and serenity Here’s a brief excerpt:

Like many women my age, I was raised to see productivity as my purpose. I was taught that I should judge my days by what I accomplish. For most of my life, spending time attending to my own personal needs seemed indulgent, if not altogether wrong. Like you perhaps, I find it hard to juggle what I know I should do and what I generally feel must get done. It’s a neverending story that continues to perplex me and many of the parents interviewed for this book. But why?

The real question is: why not? When was the last time you saw someone praised for getting out of the way or for putting their own needs ahead of others? Society rewards us for sacrificing. But as noted philosopher and Buddhist monk Thich Nhat Hanh reminded us, “We will be more successful in all our endeavors if we can let go of the habit of running all the time and take little pauses to relax and re-center ourselves. And we’ll also have a lot more joy in living.”

To continue reading resilience stories and strategies for raising children with disabilities, order your print or digital copy of Embracing Another Normal below.

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I’ve been honored to hear from readers who praise the book for its empathetic storytelling and practical guidance. Sign up below to receive information and updates on building resilience, parenting, disabilities, and more.

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Simplicity is a gift. Quiet is a gift. Time is a gift. As I get older, I find that I treasure these gifts more than any others, because they are precious and rare and make me the happiest.

—Laura McKenna, Substack writer, mother, and so much more

A special gift for you.

In the spirit of gift-giving, click on the link below to download my favorite book recommendations for the new year.

Suggested Books

Another Normal is an e-newsletter for parents and others committed to helping young adults bloom and grow. If this was forwarded to you, please subscribe to receive your own copy. Check out the complete archive here. Welcome to our community.

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In recent weeks, several readers have asked me to address the issue of marriage for people with disabilities. This topic has been in the news lately for many reasons, not the least of which is that there are marriage penalties “baked into” important government benefit programs that many people with disabilities rely upon to help cover the extremely high cost of daily life.

Like most government benefit programs, this issue is complex and confusing. But the bottom line is that millions of people in the U.S. face unfair reduction or forfeiture of benefits as a result of marrying. And this needs to change.

Here’s more good info on the topic, including a bill introduced in Congress to update these unjust and outdated rules. If you have time to listen, here’s an excellent podcast that details the issue in plain language and breaks down what we can do to work for change.

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In addition to spotlighting the U.S. laws and limitations of marriage for people with disabilities, today’s newsletter also provides reflections on a relationship that is near and dear to me between our son’s friends, Sam and Kara. I’m grateful to them and Sam’s mother for sharing their perspective.  I expect you will be, too.

Dating, relationships, and marriage can become emotional and stressful topics for parents of adult children who yearn to enjoy this aspect of independence and adulthood. Although I can’t dive deeply into them here, I hope today’s issue provides some hope and direction to readers who are thinking about this and concerned about the challenges.

As always, thanks for being here.

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Love is love is love is love is love is love is love…

—Lin-Manuel Miranda

Wedding bells chime.

On a sunny Saturday last spring, a beautiful community of adults with disabilities gathered in New Haven, Connecticut, to celebrate a very special wedding between two very special people.  The bride and groom, Kara and Sam, are my son’s friends and neighbors in the intentional community of Chapel Haven Schleifer Center. Their love story is instructive, inspiring, and definitely worth sharing.

According to Sam’s mother, Pam, her son was always able to manage relationships, and they are very important to him. When he lived at home with his parents, says Pam, he explored physical and emotional relationships with women, and experienced both success and challenge.  “Despite his disabilities, Sam could navigate the subway on his own, go out to the movies with dates, and enjoy dinner at a restaurant,” says Pam. “He always had friends who were girls, and he knew who he was attracted to.”  But sometimes he didn’t pick the best people to pursue, she recalls.

After moving to Chapel Haven and learning to live on his own, Sam met Kara.  She didn’t like the way his then-girlfriend treated him, and she told him so.  Interestingly, Sam listened.  Upon reflection, his mom is impressed by how Sam connected with Kara – right from the start.  “It was obvious they wanted their relationship to develop further,” she recalls.  “Despite our fears, we had to learn to trust and let go, which wasn’t always easy.”

Contraception and family planning were a big concern for them, but thankfully Sam’s parents had always been open and honest with him about the complexities of romantic relationships. They had naturally conversed about sexual desire and the consequences of unprotected sex. Sam decided he doesn’t want children and talked extensively with his parents and a therapist to fully understand the ramifications of this decision.

It’s important to note here that Sam’s conversations with the therapist were independent of his parents, which reflects how much they respect his dignity and self-direction, I think. He ultimately decided to undergo a vasectomy and made Kara aware of this once their relationship became more serious. Then they started planning their life together.

“We wanted to help protect them,” Pam remembers,” but we also respected them enough to let them live their lives.”  She worried about what would happen if the relationship didn’t last.  But she recalls “stepping aside” and allowing her son and his girlfriend to make mistakes and learn. “That’s what we would have done if he didn’t have disabilities,” she says.  “ You’ve got to give them opportunities to prove what they can do.”

Working with Chapel Haven staff, Sam and Kara arranged to become roommates and learned how to manage the challenges of living together. After several years, they decided to go a step further and tie the knot. And the rest, as they say, is history.

When I asked Pam how she could trust the couple to make good decisions and successfully navigate a lifelong relationship, she is adamant about the role that community support plays for Sam and Kara.  “They are surrounded by great role models, by friends and family who are there to help and guide and celebrate with. Because of Sam’s cognitive disabilities, it’s vital that he’s around people who can help him problem solve and manage relationship issues.”  Living where they do, with support from the entire community (both staff and residents), means Kara and Sam are not alone on their journey.  His parents are still very involved and supportive of his life, but so are his friends, support staff, and now his wife. “Sam’s our kid and he’s got disabilities,” says Pam. “But he also wants a life, and we all want that for him.”  So the support for him and Kara just grows.

According to Sam, “Being married is great because Kara is my best friend and she makes me really happy.” Kara is equally gleeful, saying that “Sam is respectful and fun, and he does nice things for me. I love being his wife.” Like many couples, Sam and Kara work through marital challenges with support from friends and family. It may not always be easy, but as Pam is quick to remind us, “Just because something is harder doesn’t mean it’s not possible or worth striving for.”

Additional resources.

• Here is live, online sexuality training for parents of adults with intellectual and developmental disabilities (I/DD) and professionals who work with them.

• This book is a resource for adults who are in a relationship or looking to find one.

• This outlines proposed changes to current laws and penalties for people with disabilities who wish to marry.

• Check out disability activist and author Alice Wong’s new book here. Kirkus Reviews calls Disability Intimacy: Essays on Love, Care & Desire “a poignant anthology about ability and intimacy that espouses a gorgeously original worldview.” 

Speaking of books.

It’s hard to sufficiently express my overwhelming gratitude for the outpouring of support I’ve received for my new book, Embracing Another Normal, available now on Amazon in both print and Kindle versions. In just one week since launching, we’ve been inundated with glowing praise and encouragement. I’m so glad readers are finding the book to be a valuable resource, and I can’t wait to share more news on our plans for 2024 with you soon.

Meanwhile, it would mean the world to me if you could submit a quick review on Amazon to help guide and inspire other readers.

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You can also contact me here anytime with more detailed thoughts on the book or this newsletter. Your feedback matters and I love hearing from you.

Another Normal is an e-newsletter for parents, caregivers and others committed to helping young adults with disabilities bloom and grow.  If this copy was forwarded to you, sign-up for your own copy below. Welcome to our community.

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I am thrilled to share some very exciting news…

My new book is available on Amazon — starting today!

Embracing Another Normal: Resilience Stories & Strategies for Raising Children with Disabilities is a true labor of love, chock-full of honest reflection, insightful guidance, and heartfelt encouragement to help navigate the journey of special needs parenting. I am forever grateful to the many families who shared their stories and wisdom with me. And I am beyond delighted to share them with you.

To celebrate our book launch, we’re offering the Kindle version of Embracing Another Normal completely free through December 6 at midnight PCT. I hope this gift inspires you to visit the link below and to share the book with others who may benefit.

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Co-authored by renowned PhD psychologist Dr. Linda Hoopes, who has spent more than thirty years studying resilience, change, and well-being, this book offers a proven framework for helping readers successfully manage times of turbulence and change. It also shares intimate stories from my family and many others and offers an extensive list of resources for further learning and contemplation on important topics like balancing needs, managing education, prioritizing partnership, planning for the future, and more. One reviewer called it a “new best friend” for families of children with disabilities and complex medical conditions. I couldn’t be more honored.

Based on our extensive research and personal experience, Linda and I strongly believe that everyone has the seeds of resilience within them, and that learning to weather life’s storms with grace and skill is important to us all. Embracing Another Normal applies Linda’s “prosilience” framework to six common challenges of raising a child with disabilities identified through my research and conversations with 100+ parents, educators, self-advocates, siblings and thought-leaders. It offers exercises and encouragement that are powerful and actionable. I’m so grateful to everyone who contributed to this project.

If you care about raising resilient kids and building resilience yourself, Embracing Another Normal is an important addition to your reading list. Available in both paperback and e-book formats, it also makes a great present — just in time for the holidays.

To read, or not to read…not even a question!

Early reviewers gave Embracing Another Normal an enthusiastic two thumbs up for its honesty and insights. I hope you will, too!

This book is informative, impactful, and inspiring.  I think both new and experienced parents will benefit from reading it and take away lots of good guidance from the stories and strategies provided. I wish I’d had access to such encouragement and reassurance when I was a young mom—but I’m so glad to have it now. Truly grateful, and I’m sure all those who read it will feel the same!

--Dianne B., Parent

This is the book I wish I had 30 years ago. It reminds me of What to Expect When You’re Expecting, but for the special needs community.  Not only does it give you a road map; it also provides support tools and reassurances from other parents’ stories to help readers in the marathon of raising a child with challenges.

--Ellen M., Parent

The amount of practical information in this book is remarkable.  I was drawn in immediately by the personal stories and recognizing that as different as each family is, there are so many more similarities.  Embracing Another Normal is important reading for parents and grandparents, educators, faith leaders, and really anyone who collaborates with families to help create joy filled and better lived lives.

--Susan S., Grandparent

Embracing Another Normal offers readers a new best friend who truly understands what it means to go through life raising a child with special needs.  It offers solace, suggestions, realism and a positive approach while giving a verbal hug and praise for a job well-done. I whole heartedly recommend this book for the spirit, therapeutic possibilities and realistic best approaches to help families and caregivers traverse an unknown life-long path with creativity, hope and resilience.

--Elaine P., Registered Nurse

It’s sometimes said that we lose ourselves in books. Often, we find ourselves there, too.

Please click on the link below to order your copy of Embracing Another Normal (remember, the Kindle version is free through Wednesday, Dec. 6!). I hope you’ll also consider gifting this new resource to others in your world — including your child’s school team, extended family, medical professionals, and more.

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We wrote the book to help parents learn from each other, and to help individuals who work with families gain a deeper understanding of what “another normal” is like. Please share this post via email and social media to help expand our reach. Thank you so much.

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Request for reviews.

Reviews from readers mean the world to us. They not only provide valuable insights but also help other potential readers discover our book. Whether it’s a brief comment or a detailed review, your feedback has the power to guide and inspire other readers. If you have a moment, I would be honored if you could visit the link below to share a review of Embracing Another Normal on Amazon.com.

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With Thanksgiving now behind us, my thoughts have turned to all that December holds. I love the celebrations and festivities, but always feel a moderate amount of pressure to take advantage of special holiday events and activities, show extra kindness to everyone who matters to me, honor family traditions, and conserve just a little bit of energy for what promises to be a very busy new year.

These feelings can become overwhelming for parents of young people with disabilities. Daily life is often more challenging for us, and those challenges easily become more pronounced as we attempt to do it all and do it well during December.

Depending upon where you live, winter snow and ice can be especially treacherous for families with wheelchairs. Loud concerts and school assemblies often pose unique difficulties for kids with sensory issues. And even a simple holiday gathering or gift exchange can become upsetting for young people with behavioral challenges or limited social skills.

If you encounter parents of complex kids in your daily life and work, please try to remember this and extend a little extra patience and understanding to them — especially at this time of year. If you or your child struggle personally, try to be more kind to yourself over the next month. Consider adjusting your holiday traditions (without guilt) so they work for everyone in your family, and try to find even just a little time to make yourself and your needs important and worth tending to.

Lastly, please use your purchasing power this holiday season to buy from disability-owned businesses and employment training programs. With holiday shoppers spending an average of nearly $1,000 over the next month on gifts, imagine the positive impact this could have.

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Gifts that keep on giving.

Below are five favorites from my personal holiday shopping list. Check them out and order online to help simplify your gift-giving. And please sharing today’s newsletter with folks you know to help these businesses grow and serve more young people:

21 Pineapples. I love this casual apparel company founded by a young man with Down syndrome. Check out their online shop of great t-shirts, sweatshirts, and other clothing that celebrates individuality and authenticity.

Beloved Bath was started by two mothers of adult sons with autism. Purchase handcrafted soaps and candles here and help provide meaningful work for young adults with autism.

Good & Strong Coffee tastes great and feels empowering, just in the name alone. It’s available for online purchase here from Anastasia & Katie’s Coffee Shop, which employs workers with developmental disabilities. A great hostess gift or stocking stuffer.

Sweet Heat Jam Co. is a social enterprise that provides culinary training and employment for adults with intellectual disabilities. Shop their full line of delicious gifts here.

Team Woofgang & Co. This nonprofit provides free vocational training to young people with disabilities after high school. And their all-natural dog treats are a huge hit with pups of all shapes and sizes. Order online here and make your favorite pooch extra happy this holiday season.

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Another Normal is a free e-newsletter for parents, caregivers and others committed to helping young adults with disabilities bloom and grow.  If this copy was forwarded to you, sign-up for your own copy below. You can also hit the “heart” button at the bottom of this e-mail 🖤 to help others find us on the internet. Thanks for being here.

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As the U.S holiday of Thanksgiving approaches, I want to extend my heartfelt gratitude to every reader and supporter of Another Normal. For more than three years now, I have used this newsletter to write from my heart, provide helpful resources and information, and share stories to encourage and inspire anyone committed to helping young people with disabilities learn to bloom.

To quote my wise friend and author Alicia Rodriguez, “We cannot be complete without being connected as individuals and a global community.  We cannot find happiness and possibility in a vacuum.   Like a tree without roots, our essence will wither and die without the nourishment of family, history, and community.”

Thank you for connecting through this newsletter, for sharing your thoughts and ideas with me about issues that matter to you, and for being a part of the community I am attempting to build here — in support of parents and young people everywhere.

Warmest wishes for a beautiful holiday. And thanks for being here.

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Mindset matters.

I love this reminder that attitude is everything. Use language suggested below to help young adults with disabilities (all kids, really) reframe their challenges and see themselves as “works in progress.” Powerful at home and a good resource/reminder for school and transition teams, too.

A problem of epidemic proportions.

According to a recent report from the U.S. Surgeon General, roughly half of U.S. adults reported experiencing measurable levels of loneliness, and rates of such experience are significantly higher among those with disabilities. The report asserts that a lack of community and connection can increase the risk for developing mental health challenges and even for premature death (akin to daily smoking). This news is not only alarming, but very grim indeed.

Programs like this from The Friendship Project in Massachusetts help people with disabilities build and sustain friendships and combat isolation, matching volunteers with those seeking companionship, and forging meaningful relationships based on mutual interests.

What can you do where you live?

Seen and heard.

November is National Family Caregiver Month, a time to see, hear, recognize, appreciate, and support the relentless efforts of nearly 17 million Americans caring for a child with disabilities or complex medical needs. Their daily lives demand more than most people can imagine. And the chronic stress they experience can negatively impact their mental and physical wellbeing. It also can make them feel very much alone.

Although it’s a tough film to watch, the Unseen documentary is especially instructive and illuminating for readers who want to deepen their understanding of the state of family caregivers in the U.S. and what we can all do to help improve this situation. To quote one viewer, “It’s a powerful call to action for our country and society and a chilling reminder of the task we collectively have ahead of us.”

Rent it here for $10 (through November 30). You can also purchase a gift viewing for the same amount to help raise awareness in someone else.

Unsure of why this matters now? Check out the trailer below:

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Another Normal is a newsletter dedicated to helping families with disabilities bloom and thrive. The archive of issues includes curated news and information on topics such as employment, independent living, government supports, disability rights, sexuality, travel, recreation and more.

If this e-mail was forwarded to you, please subscribe and join our community. You can also hit the “heart” button at the bottom of this e-mail 🖤 to help others find us on the internet.

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I’ve been thinking a lot lately about how hard it is to let go in life, especially for parents with kids who obviously need someone to hang onto for a little longer. Knowing how to step back when we’re so used to stepping in can be very challenging. I believe it’s one of the hardest things parents face as our children grow into adulthood.

It’s vital for parents and other family members (educators, too) to figure out how to teach and support kids with disabilities by giving them room to try and fail and ultimately learn. This requires us to let go of the control we often have over their lives and decisions. Otherwise, we risk creating young adults who are overly-reliant on others and unable to advocate for themselves.

Is this something you struggle with? If so, try noticing when and why you have trouble letting go. Then find ways to experiment with doing things differently. This often requires us to seek and accept help from others as we work to break old habits and create new ones that better serve our kids and ourselves.

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This week, I’m sharing a short podcast interview in which I discuss this important topic with PhD psychologist and Harvard Medical School professor Dr. Ellen Braaten. In addition to her work with patients and families, Ellen is the sister of an adult man with Down syndrome. I found her perspective and insights quite powerful, and I hope you do too. Listen here.

In order for children to learn how to do hard things, you have to let them go through hard times. There is no way to truly master something without experiencing it.

—Sara Bean, M.Ed.

I love this visual depiction of learning to bloom. What a beautiful reminder of all we can do to cultivate growth and flourishing in those we love.

This newsletter provides information and resources on a wide variety of topics related to raising children with disabilities. If this copy was forwarded to you, please subscribe below to get your own. And thanks for being here.

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Tomorrow is an extremely important day in the United States: Election Day. It’s our chance to help elect leaders who care about issues that matter to people with disabilities and their families. Voting is an important way for us to create positive change in our communities and beyond. The more we vote, the more powerful our voices become.

Unfortunately, many voters with disabilities experience multiple challenges when trying to cast a ballot.

According to a recent Rutgers University study, more than 2 million voters with disabilities reported facing some type of difficulty casting a ballot in 2022.

Increased restrictions and voter suppression laws enacted since then only contribute to these challenges.

If someone you care about with disabilities wants to vote early or on Election Day, they’ll likely have to navigate a complex web of state and local election rules and deadlines regarding voter registration, absentee ballots, and being assisted by someone at the polls. Here is valuable information to help them understand their rights and to help you support and encourage young people with disabilities to register or confirm a voter registration. Knowledge and preparation are vital.

According to the American Civil Liberties Union, federal law, including the Americans with Disabilities Act and Voting Rights Act, require election workers to make polling places fully accessible to voters with disabilities. Additionally:

• People who need assistance when voting by reason of disability or limited English proficiency must be able to choose the person who assists them, with few exceptions.

• The right to vote cannot be conditioned on a voter’s ability to read or write or on a similar test of cognitive capabilities.

• Each polling place in federal elections must have at least one accessible voting machine that enables voters with disabilities to cast a secret, independent ballot.

Is your polling place operating in compliance with ADA? If not, how can you advocate for necessary improvements and adherence to the law? Once Election Day is over, there’s much more work to be done. What will you do to help?

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Another Normal is a newsletter dedicated to helping families with disabilities bloom and thrive. The archive of issues includes curated news and information on topics such as employment, independent living, government supports, disability rights, sexuality, travel, recreation and more.

If this e-mail was forwarded to you, please subscribe and join our community. You can also hit the “heart” button at the bottom of this e-mail 🖤 to help others find us on the internet. Thanks for being here.

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I started this e-newsletter in 2020 to share resources and information that help young people with disabilities and those who support them. Never in a million years could I have imagined writing today’s issue, which spotlights two groups committed to rescuing disabled people from war zones. A sad day indeed.

Like many of you, I lay awake at night wondering how this will all end and what will be lost along the way. During the day, I seek out news from trusted sources, but sometimes hide from the horrors because I can’t handle all the emotion all the time.

This morning I awoke to a terrifying news report about the more than 200 people being held hostage by Hamas, including a young teenage woman with myotonic dystrophy. To think people have kidnapped her is beyond comprehension:

Rut Hodaya Perez is in no shape to be held as a hostage in the Gaza Strip.

A 17-year-old Israeli girl who has myotonic dystrophy, Rut cannot walk and uses a wheelchair. But that didn’t stop Hamas gunmen from snatching her on Oct. 7 from a trance music festival near the Gaza border during their spree of kidnapping and slaughter.

Rut is now among the large and varied group of captives that Hamas is believed to have dragged back to its underground labyrinth of tunnels in Gaza.

“She is not built to live in a place like that,” said her sister, Yamit.

—New York Times/October 21, 2023

Israel.

While the world is currently relying on diplomatic efforts to bring Rut and other hostages of Hamas to safety, there are things we can each do now to support humanitarian relief for people with disabilities impacted by the ravages of this war.

Please take some time to watch the video below, which provides an update on the essential work of Access Israel’s Purple Vest Mission to assist and save people with disabilities and the elderly in times of emergency. According to Jamie Lassner, Executive Director of Accessibility Accelerator and a Purple Vest Mission partner, “Since the atrocities of Saturday, October 7, we have been inundated with requests from people with disabilities in zones under attack. Each request demands customized response and solutions due to the complexity of each person’s unique needs. Being disabled and/or elderly in a world not constructed for you is challenging in the best of times. War or a natural disaster immediately makes navigating the world infinitely more dangerous - a nightmare for people with disabilities and the elderly.”

We must help if we can.

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Ukraine.

The Sunflower Community Fund is providing financial assistance and medical aide to organizations and individuals that assist orphans and people with disabilities in Ukraine. You can learn more about their important work here, which continues to make a huge difference in the lives of many Ukrainians suffering from the horrors of the ongoing war with Russia.

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Difficult conversations.

Experts agree that talking with young people about conflict and war is essential to helping them understand the world around them. Here is expert advice on how to navigate these conversations with those you love by providing information and also reassurances. Today’s newsletter also offers ways families can help, which may be empowering and important for the young adults in your life, regardless of disability.

As always, please leave a comment below to share additional information on this topic with other readers.

Thank you for caring.

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Another Normal is a newsletter dedicated to helping families with disabilities bloom and thrive. If this e-mail was forwarded to you, please subscribe below and join our community.

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You can also hit the “heart” button at the bottom of this e-mail 🖤 to help others find us on the internet. Thanks for being here.

Today’s rain feels like a gift of sorts. It messes up my plans for the day, but it also gives me more time to get some things done that I’ve been putting off. And it smells amazing!

Although I didn’t want rain, I’m grateful for it this morning. Shifting my perspective like this enables me to appreciate what initially disappointed me. It’s a great strategy for dealing with all sorts of stuff that happens in life, and something we can teach our kids as well as practice ourselves.

What offers you the chance to shift perspective? What disappointment can you turn into opportunity? How can you harness the power of reframing to help those you love?

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A man who views the world the same at fifty as he did at twenty has wasted thirty years of his life.

—Muhammad Ali

NOTE: I’m gearing up for a big birthday at the end of the month and am taking a few weeks off to celebrate. I’ll be back with the next issue of Another Normal in late October. Meanwhile, I’d love a special gift from you: Can you please share this newsletter with one friend, neighbor, colleague or relative you think might benefit from the information and resources? Thank you and thanks for being here.

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Hey big spender.

The U.S. Department of Education last week committed nearly $200 million to improve career opportunities for young adults with disabilities. Monies will fund 20 projects across the U.S. under the federal government’s Pathways to Partnership program in an effort to decrease the unemployment disparity between youth with and without disabilities.

Here is a state-by-state list of newly-funded programs, designed to “pave a clear and robust path to independent living and competitive integrated employment as children and youth with disabilities transition from high school to postsecondary endeavors.” Bring it on!

Let me entertain you.

Whether you prefer to read, watch or listen — here are a few recommendations from Another Normal readers. (Eager to enjoy them myself, too.)

• brother.do.you.love.me is a new book about two adult brothers, including one with Down syndrome, which chronicles their pandemic challenges and ongoing efforts to combat isolation and build connection. The BBC says, “This is a story of our times so beautifully told and illustrated by Reubs and Manni. Deeply touching and a joy to read.’  Another reviewer calls it “One of the most extraordinary books I’ve ever read. An aching, beautiful portrait of the only thing that truly matters in life: the love and care we show each other.” Available for purchase here.

• Ezra is a new film with a star-studded cast, including Robert DeNiro, Bobby Canavale, and newcomer William Fitzgerald. The film’s creators were committed to casting an actor with autism in the title role and hiring cast and crew members who had a personal experience with neurodivergence. As one Los Angeles Times’ film critic writes, “This movie, to me, is about the power of love in and of itself to be the transcendent quality in all families.” Importantly, the film has also been praised by reviewers with autism. It premiered last week at the Toronto International Film Festival and is expected to be released later this year.

• LOMAH is an award-winning podcast by Kim Albrecht, a mother, resource-gatherer, and information-sharer. It addresses a variety of topics that matter to parents raising young adults with disabilities. Kim asks great questions, searches out important answers, and dives deep. Available on Spotify and Apple Podcasts.

Travel tricks and tips.

• Here’s a great article on how autism-certified travel options helped one family enjoy the places and spaces they’d yearned to visit.

• This update spotlights efforts by the Christopher Reeve Foundation to make spending time in nature more accessible for all. As we all know, the benefits are boundless. Now there are more resources to help when it’s hard. Just in time for autumn.

• Read more here about how outdoor enthusiasts with disabilities are tackling accessibility challenges nationally. Especially good information for anyone planning to visit a national park.

Moms make things happen.

I loved hear about this Connecticut mother, who took it upon herself to help local police interact more effectively with people who have autism and other special sensory needs. Check out the news story below. Might this be useful where you live?

Another Normal is a free e-newsletter for parents, caregivers and others committed to helping young adults with disabilities bloom and grow.  If this copy was forwarded to you, sign-up for your own copy below. And welcome to our community. 

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The newsletter archive includes curated news and information on topics like employment, independent living, government supports, disability rights, sexuality, travel, recreation and more. You can search by keyword to find what interests you most. You can also hit the “heart” button at the bottom of this e-mail 🖤 to help others find us on the internet.

Labor Day isn’t just a time for family gatherings and backyard barbecues, or a day off school or work. For me, it’s the start of a new year — a chance to think about what I want to accomplish and how I might do so before January arrives. A non-traditional calendar, I know…but I also know I’m not alone. Many parents of young adults with disabilities revisit priorities once September arrives. And for many of us, how and where our “kids” will “labor” becomes more top-of-mind than ever.

As we all know, a job means much more than just a paycheck. Yet employment opportunities for young people with I/DD are few and far between these days, no matter how many new coffee shops or bakeries parents seem to open and fund.

Today’s issue of this newsletter offers information to help navigate this aspect of raising a young person with special needs without losing sight of your own needs, as well. As James Clear articulates so well below, “you decide where to drive the nail.”

Happy end of summer. Happy job searching. Happy hammering.

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My approach is to empower, not to prescribe. I'm not interested in telling you which habits you should build or which choices you should make. You know what works for your life and circumstances better than I ever could. Instead, I want to equip and empower you with ideas and strategies so you can make your own choices and do the things you want to do. I'll give you the hammer, you decide where to drive the nail.

—James Clear 

Federal work support.

Last week, I came across this list of tips for how government entities can increase hiring of people with disabilities. It’s compiled by the U.S. Office of Personnel Management (OPM), and also provides details about a special Schedule A Hiring Authority. According to the OPM, “Schedule A is a special appointing authority that agencies can use to noncompetitively appoint individuals who have a severe physical, psychiatric, or intellectual disability.” Disabled applicants need a letter from their doctor or a government agency that provides medical benefits to prove eligibility for the appointment. Here’s a sample of what the letter should include.

Seems to me this opens up a whole new world of employment opportunities for young people with I/DD who want to work and contribute in meaningful ways. Wishing anyone who explores further much success. Please share any learnings with me here.

Presume competence.

I’ve been thinking a lot lately about this concept: the presumption that people are competent and deserve to be treated as equals. When we recognize this, we understand that someone’s behavior often reflects their needs and ability to communicate them. The best way to capture their interest and motivation is often just to follow their lead.

The Hussman Institute for Autism has compiled this extensive resource for parents, educators and others to help explain and optimize presumed competence at home, school and in the community at large.

Based on the work of Lev Vygotsky, the manual asserts that “The essential role of parents and teachers is to provide enough support so that the child can be successful at a given task, but not so much that the task is actually completed without the child’s effort.”

This free guide from Empowering Ability also outlines specific action steps to help young adults with I/DD gain independence. The company’s founder also offers 5-minute videos on specific topics related to raising independent young people, which you may find helpful.

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Unpaid caregiver plight.

Would you be surprised to learn that one out of five employees in the United States is an unpaid family caregiver? According to this recent article, unpaid family caregivers are growing in number, reporting increased feelings of isolation, and suffering from physical and mental health challenges.

Research by The Rosalynn Carter Institute for Caregivers (RCIC) shows that caregiver employees provide an average of 20 unpaid caregiving hours per week, which goes a long way towards explaining why nearly one-third of them have voluntarily left a job because of their caregiving responsibilities. The RCIC offers support programs, advocacy, and much more to help individuals consumed with helping their loved ones. But more efforts like this are needed.

My friend, Tanya Yarconi, helps caregivers help themselves through s Facebook Group and other programs. She is the parent of a young woman with disabilities and knows how hard the journey can be. She also knows much more to help at various points along the way.

Another Normal is a free e-newsletter for parents, caregivers and others committed to helping young adults with disabilities bloom and grow.  If this copy was forwarded to you, sign-up for your own copy below. Welcome to our community.

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Back-to-school season means different things to different parents, especially those of students with disabilities. Some are filled with fear and anxiety about what awaits in the coming year. Others rejoice in the return to school because it opens up hours in the day, freeing them to pursue their own interests and take a break from caregiving. Still other parents see every new school year as a clean slate with limitless possibilities and opportunities. Most of us experience a mixture of all these emotions, and many more, as well.

No matter how you feel about this time of year and all that it entails, today’s newsletter offers resources to help you launch into the school year with confidence, conviction, and calm. Please let me know if something is particularly helpful, or if you want more info on a specific subject. Last but not least, remember to turn up the dance music. Chuck Berry is always a great way to start the day!

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In a society and world obsessed with goals, often the measure of a person is not where he or she ends up, but how they get there.

—Christine Lai, S.E.L.F. Founder

Peaceful back-to-school shopping.

This is the last week to take advantage of Walmart’s new sensory friendly back-to-school shopping hours. From 8-10am this Saturday, stores across the U.S. will dim their lights and lower their music to accommodate shoppers with sensory sensitivities. Walmart says this is an effort to offer a more inclusive shopping experience. Call your local store for details.

School advocacy resources.

The ARC has compiled this free directory of contact information of important special ed resources that must exist in every state. These include protection and advocacy programs and parent centers funded under IDEA, state agencies responsible for overseeing special ed and early intervention services, and ARC chapters offering special advocacy services to students with I/DD. Start the new school year off right by familiarizing what’s available where you live. Learn more about how to advocate for your student through these additional ARC materials.

Sex ed for all.

A recent article in USA Today spotlights the dire need for sex education for students with disabilities. Ensuring young people with disabilities have access to relevant, age-appropriate, and affirming sex education can help them achieve autonomy and self-care, not to mention quality relationships and more fulfilling lives. This issue has been previously addressed in Another Normal, but much-needed change is unfortunately slow. According to USA Today, only five U.S. states mandate inclusive sex ed for students with disabilities. Requirements vary not only by state, but also by school district. Progress depends on parents, it seems.

This CA program serves as an excellent model for other communities. And this social story exemplifies how we can and should develop materials to educate and empower young women in particular.

How can you influence things where you live?

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‘Til death do us part.

August is a great time for parents to learn alongside their children. And we all have a lot to learn to plan effectively for the future. In honor of National Make-A-Will Month, here’s a website offering free assistance with this daunting responsibility. Preparing in advance for our death (no matter how scary) is a gift to ourselves and our families. More information on how to develop a holistic future plan for your child with disabilities can be found here.

Another Normal is a newsletter dedicated to helping families with disabilities bloom and thrive. Thanks for being here.

If this e-mail was forwarded to you, please subscribe and join our community. You can also hit the “heart” button at the bottom of this e-mail 🖤 to help others find us on the internet.

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Last week, I saw this message posted on a listserv I belong to:

Hi, I’m 66, need help with all tasks of daily living, and use aac software to help me communicate. Does anyone know of an assistive living facility that accepts a person who needs as much help as I do but has a good mind? Also, I would like to be around people who are both disabled and able-bodied.

I’m not sure what bothered me most about this, but here are a few red flags that moved me to write about it here:

• 66 doesn’t seem old enough for assistive living;

• Needing physical support AND having a “good mind” shouldn’t make care more complicated to find;

• Searching for this type of help online must feel scary and desperate. Can’t we do better?

I’m thinking about all the young people I know who are in their twenties. And I’m hoping that a few decades from now, none of them is in a position like the one described above. As parents and people who care about their lives, we must do a good job of helping them maximize their potential now, develop for the future, and plan for whatever “old age” entails. Our families deserve this, and so do we.

As every parent of adult children knows, kids grow up fast. This means we grow old, too, and planning for when we’re not around is something we simply must not avoid, no matter how scary it seems. Check out this wonderful website to get started.

As always, thanks for being here.

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Road to success.

I was recently introduced to a planning framework that identifies seven key domains required for a happy, healthy life. These are so important for us to remember as we navigate our journey as parents of individuals with disabilities. To me, striving to achieve them ourselves and helping our loved ones do the same equals a life well lived:

• Identity (being well-known; having personhood; individuality; have a history)

• Growth (development; enrichment, expanding; evolving)

• Autonomy (liberty; self-determination; choice; freedom)

• Security (freedom from doubt, anxiety, or fear; safety; privacy; dignity; respect)

• Connectedness (belonging; engaged; involvement; connected to time, place, and nature)

• Meaning (significance; heart; hope, value; purpose; sacredness)

• Joy (happiness; pleasure; delight; contentment; enjoyment)

Disability pride.

At the recommendation of my sister, I just finished a powerful book called The Extraordinary Life of Sam Hell. It was a quick and enjoyable page-turner that left me pondering many of life’s big questions. It also demonstrated how important it is for us to love ourselves and embrace our differences, even if this takes a long time to achieve.

In honor of Disability Pride Month (July), here are a few points of clarity from Easter Seals:

• Disability is a source of strength and creativity. It can foster resourcefulness and ingenuity and is a strong catalyst for growth in society;

• Disability pride means something different for everyone, but it shares one important characteristic: Disabled people have the right to love, accept and advocate for their whole selves. 

• Self-advocacy is never alone. Though “self-advocacy” means advocating for one’s own rights, there’s always a community right behind you – especially in the disability community, where ​​there are countless advocates supporting transformations in policy and society.

Check out this podcast for more interesting and entertaining perspective about disability from people with disabilities. So many great episodes.

What are you reading or listening to these days?

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Today’s history lesson.

As the mom of someone with disabilities, I have long felt pressure to know all about the ADA. So I decided awhile ago to learn a few basic facts that actually help me be a better parent and advocate. Here are a few, in honor of the ADA 33rd “birthday” this week:

1. The Americans with Disabilities Act was signed into law by President George W. Bush on July 26, 2023. Amended in 2008, the law helps protect people with disabilities against discrimination in the workplace, school and other settings. Here’s a very user-friendly link with helpful info about what these laws do and why they’re so important to people with and without disabilities.

2. The ADA is divided into five titles (or sections) that relate to different areas of public life: public accommodations, employment, transportation, state and local government services, and telecommunications.

3. Even after more than three decades, many elected officials and people in authority don’t understand that disability rights are civil rights. So it’s often up to individuals and their families to help ensure the ADA is enforced at a local level. Learn more here about what to do if you have a complaint or question about the ADA where you live.

Every person in our nation has a fundamental right to participate fully in our society and to determine their own future, the right to self-determination, the right to dignity.

— U.S. Vice President Kamala Harris

Straight talk.

My in-box exploded this week with messages from people sharing this recent article on autism. The subhead says it all: “Rates of autism are skyrocketing. The question isn’t just why—but what we need to do about it right now, and what’s holding us back.”

Rather than simply celebrating neurodiversity, as society is increasingly moving to do, author Jill Escher, the mother of two young adults with profound autism, explains why it’s vital to continue researching what causes autism and developing services to support autistic individuals and their families. Her honest and gut-wrenching piece is a wake-up call to people everywhere.

“We desperately need innovative solutions. But we cannot make progress if we continue normalizing patent disability, burying common sense and moral duty under a pile of fairy tales.”

Please share your thoughts below.

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Now hiring.

The Superhero Project is looking to hire someone to help with social media. This super inclusive non-profit empowers youth impacted by illness, disability, trauma and complex mental health or medical needs. If you or someone you know is interested in this part-time position, send an email to hello@superheroprojectkids.org — along with a cover letter, resume, and 2-3 samples of Canva (or similar program) design work.

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