The Best Part of Your Day

By Shanell Mouland, Blogger at GoTeamKate.com

KateIf our Kate was to sit quietly beside me on any given day you might never know she was different.  Her eyes are impossibly blue and her blonde hair is cut just above her chin with bangs framing her angelic face.  She is tall for her age; almost four.  For all intents and purposes she could, potentially, appear ‘normal’ if there is such a thing.

If you look closer you will see she that her blonde hair is wild about her head for lack of brushing, because brushing hurts and she wears a well-worn bright red Teenage Mutant Ninja Turtles t-shirt, because change is hard.  In her mouth is a chewy tube that helps her regulate a need to chew and in her tiny hand is Master Splinter, the Sensei of the aforementioned turtles.

She is likely up on her toes, bouncing or spinning.  If she is happy her arms are flapping. She is usually happy. The idea of her sitting quietly is almost humorous to us now.

She may be repeating a comforting phrase.  She has acquired much language even if she cannot always use it properly.

“Wet’s do dis.” (Let’s do this) A phrase she’s pulled from her turtle show, no doubt.

Kate has autism and she’ll be the best part of your day.

Grace, our eldest daughter (5) and Kate’s best friend will often have one hand at the ready, for when Kate sees fit to take off.  She is young and quick and can often capture her sister before me.  You’ll see this scenario play out whenever we are in public.  I’ve often said the four words Grace utters most in public are:  “Mama, she’s getting away!”

My husband and I make every effort to do things as a family.  If we feel Kate will be overwhelmed we obviously give her a pass and she can spend some down time with her grandparents, however, if we feel Kate will enjoy any given excursion, look out, because she is coming.

Our family loves a certain Japanese restaurant in our city.  Do I call ahead and warn them we are coming? No.  Do I announce on social media that we will be there in case someone was planning a quiet dinner?  No.  We attend the restaurant with our family just like you would.

Yes, Kate will most likely not sit in her seat.  She will probably visit most tables in the restaurant anxious to show off her turtle figure.  She will explore the textures of the seats and the tablecloths and the curtains.  She will protest loudly when she is not allowed in the kitchen.  She will make sure each patron eating dinner that evening is fully aware of her presence.  She will call the women, Mama and the men, Daddy and she will hug more than a few.

In our experience, most people will smile broadly and engage our little social butterfly.  Some will shoot us that ‘how dare you bring a child to a restaurant like this’ look and some will stare at us with pity.

As we enjoy our Sushi and Tempura and some great conversation with the folks at table five about autism and our family, the woman at table nine purses her lips and sips her wine annoyed that mid-miso soup she was privy to Kate yelling to the chef clear from our table:  “Dat your hat, daddy?  I have dat hat?”  Her husband seems oblivious to her annoyance and taps on his phone while murdering his teriyaki.

Table five dissolves into laughter at Kate’s cute request for the chef’s hat.  They order more wine and ask Kate which turtle is her favorite.

Table nine gets up and leaves.  They pay their check with a disapproving glance from the Mrs. towards us.

Honestly, who brings someone like that woman out to a public restaurant where a family is trying to enjoy a meal, anyway?

And then I hear:  “Mama, she’s getting away!”

 

Shanell Mouland is a mother, teacher and writer from New Brunswick, Canada. When she isn’t advocating for the rights of individuals with autism she is writing a children’s book called: Sunny and Sinclair. She is actively seeking a publisher because the three full time jobs mentioned earlier take a lot of time away from important things like coffee drinking and relaxing. She can be reached through her website: goteamkate.com.


Learn more about The Arc’s activities for Developmental Disabilities Awareness Month at www.thearc.org/lets-go-out, and join our March 29 event on Facebook.

It Takes a Team

By Bernard A. Krooks, Past President, Special Needs Alliance

Dignity, security and personal fulfillment are essential to the quality of life that all individuals with intellectual and developmental disabilities deserve. But they face a tangled social, political and legal landscape, and it often requires the coordinated efforts of relatives, friends and special needs professionals to help them map their way.

Family members, of course, play a central role, offering emotional support and encouragement, planning for long-term financial security and frequently acting as primary caregivers. For some, they’re an individual’s most effective advocates, reinforcing their point of view with intimate understanding of a loved one’s needs.

Yet all too often, dreams face constraints.  Landmark legislation has recognized the civil rights of individuals with disabilities, and great strides have been made regarding social inclusion. But these hard-won victories are incomplete, and budget debates at all levels of government threaten even the programs already in place. Self-advocates, families and their supporters –advocacy organizations such as The Arc, the Consortium for Citizens with Disabilities, the Special Needs Alliance and many others–must continue their unstinting demand that people with disabilities have the same opportunities as others to lead self-directed, satisfying lives.

Then there are the special ed teachers, speech therapists, psychologists, career counselors and many other service providers who assist those with disabilities on a daily basis to realize their potential. These committed professionals challenge, guide and applaud those they serve in order to build the skills needed for self-reliance. They help provide a foundation for the aspirations of individuals and their families.

As a child with disabilities matures, families must often balance concern for their safety and well-being with a desire to encourage their independence. In most states, individuals are considered legal adults at 18, with full responsibility for their own financial, legal and healthcare choices. Special needs attorneys are sensitive to these deeply personal matters and can guide parents in their deliberations concerning various forms of guardianship, power of attorney and health care proxy, as necessary, and in ways to optimize self-direction.

Then there are financial considerations. The specialized care required by some individuals with developmental disabilities is costly. While many expenses are covered by public programs, there are gaps, and qualifying is usually means-based.  Families, financial advisors and special needs attorneys should begin partnering early to evaluate an individual’s long-term needs, eligibility for benefits, the amount of money necessary to make up the difference between what is covered and what is not, and how to protect those funds while receiving government assistance.

Self-advocates are increasingly shaping their own destinies. It takes a team to assist them with the tools to succeed.

The Special Needs Alliance (SNA), a national non-profit comprised of attorneys who assist individuals with special needs, their families and the professionals who serve them, has formed a strategic partnership with The Arc.  The relationship is intended to facilitate collaboration at the local, state and national level on issues such as providing educational resources to families, building public awareness, and advocating for legislative and regulatory change. 

Sexual Abuse of People with I/DD a Global Scandal

By Theresa Fears, MSW. Theresa has been working in the field of sexual abuse prevention of people with intellectual and developmental disabilities for 13 years. She created the Partnership 4 Safety program at The Arc of Spokane. The Arc has recently launched a National Center on Criminal Justice and Disability to address some of the issues highlighted by Theresa and provide resources for people with I/DD who are in contact with the criminal justice system.

rate of sexual abuse graphicSexual abuse of people with intellectual and developmental disabilities (I/DD) is a huge problem.

Children and teens with I/DD are three to four times more likely to be sexually abused than are those without disabilities. Some researchers estimate that the lifetime rate of abuse of adults with disabilities is as high as 90 percent.

Childhood sexual assault has lifelong consequences. Childhood sexual assault has been connected to depression, posttraumatic stress disorder and an increased risk of sexual abuse in adulthood.

Adult victims of sexual assault may experience the trauma of not being believed or of being blamed for the attack and risking displacement from their homes or residences. Sadly, many victims do not receive therapy to help deal with the trauma of an attack. In a recent study, only 33 percent of victims received therapy after their sexual assaults. There are many false beliefs about those who offend. The most common is that they are strangers, but according to a number of authors, between 97 percent and 99 percent of assaults were committed by someone the victim already knew. Approximately 44 percent of the perpetrators were connected because of the victim’s disability. Perpetrators may include special education teachers, bus drivers, caregivers and other support personnel.

Research on risk factors for sexual assault of people with I/DD has been consistent over the last 20 years. The frequently reported risk factors are:

  • Lack of education about sexual development  and anatomy
  • Lack of information on abuse awareness
  • Lack of healthy relationship education
  • Lack of social norm education
  • Lack of age-appropriate friends

If sexual assault is a problem, then what is the solution? Prevention! There are three levels of prevention according to the Centers for Disease Control (CDC), primary, secondary and tertiary. Primary prevention takes place before harm has occurred; its purpose is to stop sexual abuse from happening.

Secondary prevention happens immediately after abuse has occurred; its purpose is to prevent it from happening again. And lastly, tertiary prevention is a response to the harm of sexual abuse — generally therapy.

The CDC has recommendations for creating prevention programming based on years of evaluating what works and what doesn’t.

Providing prevention programming across the lifespan would require offering education to parents of people with I/DD and, children, teens and adults with I/DD.

The logical place to begin primary prevention therefore is with the caregivers of young children — the parents.

A solid parent education program should have three goals:

  • To  increase parents’ understating of  the rates of abuse and risk factors
  • To explain parental obligation to support children’s development as sexual beings and
  • To teach parents how to identify and challenge inappropriate or dangerous behaviors of any adult in a child’s life.

How can you begin a prevention program at your agency? First, look to the programs you already have for a natural fit. It would be easier to add sexual abuse prevention training to a parent education, information, support and advocacy program than it would to an employment program for example.

A good free parent education program is the “Where We Live” curriculum created by Pittsburg Action Against Rape (www.pcar.org/special-initiative). Although it is not written for children with I/DD, it can be easily modified. I would be happy to share this information with Apostrophe readers who are interested in beginning parent education in their community.

http://www.cdc.gov/traumaticbraininjury/pdf/VictimizationTBI_Fact%20Sheet4Pros-a.pdf

http://en.wikipedia.org/wiki/Sexual_abuse_of_people_with_developmental_disabilities#cite_note-5

This article first appeared in the Winter 2013 issue of Apostrophe Magazine (October-December).

Myths and Facts: The Convention on the Rights of Persons with Disabilities (CRPD)

#CRPDFor the last two years, The Arc has been working with numerous disability advocacy groups to garner support for the Convention on the Rights of Persons with Disabilities (CRPD), which will promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by persons with disabilities across the globe. There are many misconceptions about the CRPD, and we would like to clarify some of the most common myths and facts.

Myths and Facts About the CRPD:

Myth #1:  Sovereignty will be lost if the treaty is ratified
FACTS: Sovereignty means that the U.S. is protected as an independent governing body and no outside organization (like the UN) or another country can compel the U.S. to do anything. The same RUD (RUD = legal binding condition added to treaties) is attached to the Disability Treaty that is attached to all human rights treaties passed by the U.S. Senate in order to protect U.S. sovereignty ensuring that in no way can the treaty compel the U.S. to do anything and that any changes in law would have to go through our own traditional legislative procedures.

Myth #2: The treaty will require funding and support for abortion
FACTS: Abortion is not mentioned in the treaty but opponents of the treaty  lead folks to think it is.  There is nothing in this treaty that changes abortion rights in the U.S. It simply states that people with disabilities should have the same access to health care as people without disabilities. It is a statement of non-discrimination NOT a change in U.S. law or policy.

Myth #3: The treaty will take away homeschooling/parental rights
FACTS: The CRPD is a non-discrimination treaty that does NOT change our law but confirms our commitment to disability rights and allows us to impact disability rights globally. That means NO changes to U.S. laws covering parental rights laws or homeschooling. Read this news article to learn more.

The Declaration: Just Do One Thing

For the last few days, I’ve been at the Coleman Institute Conference on Technology for People with Cognitive Disabilities near Boulder, Colorado . I’m proud that The Arc helped to launch the Declaration of Rights for People with Cognitive Disabilities to Technology and Information Access, a stunning Jeffersonian document written by a small group of dedicated thought leaders in technology and cognitive disabilities.  This document, which is available in several versions to ensure equal access to diverse readers at http://www.colemaninstitute.org/declaration, firmly reminds the United States and the world that communications platforms are public domains and therefore need to be accessible for all.

Why is this so important?  Imagine, if you will, being unable to use your cellphone, computer and internet, ATMs and electronic banking, online job application forms, online insurance, health information, emergency information, weather, local community information… and anything else you access through electronic or wireless means.  Imagine that while you might have the equipment, the languages and instructions that are used in all of these platforms are written in a confusing language that you don’t understand, maybe in words that are too small or which you can’t see clearly and which demand speed in processing that are too fast for you to react to. Now imagine (this is the easy part) that these platforms are how the world around you communicates with and operates upon. But because the platforms upon which the communications are built are not written into your language and communication needs, there is no way for you to move in this social space.  You are, as a result, wholly dependent on someone else to help you translate the information you need to know.  This is largely the current reality for people with cognitive disabilities in terms of technology and information.

People with cognitive disabilities include those with intellectual disabilities, Alzheimer’s, traumatic brain injury, some psychiatric disorders.  While these impairments are the reality for this population, it does not mean that they should by virtue of their impairment be forever excluded from the public communications domain or marginalized as full citizens of this world.  They deserve equal access to technology and information that support public communication and which have become a mainstay of social interaction.  The Declaration states without apology that technology and information must be accessible to all, not just to those who can read or process or be physically adept in seeing, hearing, and typing to interact with this system. There is a sense of urgency to this because cloud-based communication platforms are solidifying rapidly, and if we don’t take action now, people with diverse communication needs risk being forever excluded.

And we can’t let that happen.

The Arc has been working on this Declaration with other thought leaders in cognitive disabilities and technology to ensure that the needs of people with intellectual and developmental disabilities are included in this new social movement.  The Arc and now 57 organizations and even more individuals have formally endorsed the Declaration.  I urge each of you to go online and read it yourself. The more people sign on, the more visibility, awareness, and power this movement will gain to advance accessibility in the new cloud based communications and information field.  Here’s one more thing: Earlier this week, our small group of thought leaders went around the room and promised to do at least one thing to advance this social movement.  As you read this, I ask you to do one thing as well to help us advance this important cause.  Perhaps you will review the Declaration and endorse it, or perhaps to send this to your personal networks.  Or maybe you can print it off and hang it in your office or send it to your child’s teacher or bring it to your local wireless communications provider.  Maybe you’ll write your own blog, post it on Facebook, tweet it out, talk about it in a staff meeting, or simply think about ways to help while you tend your late summer garden… the list of possibilities of what you can do is endless, just as the possibilities of how this modest document might change the world for people with cognitive disabilities.

Do one thing.

Help us change the world.

We are The Arc.

Catching Up with Micah Feldman, Intern and Young Advocate

Micah FeldmanMicah Feldman is a young man “going places.”  Just to give you a sense of how involved Micah is with fulfilling his goals of being an independent young man, taking advantage of every opportunity in his path – it took us at The Arc several weeks to coordinate a time to talk to prepare this blog post. Between Micah’s commitments as an intern at the U.S. Department of Health and Human Services (HHS), speaking engagements at various conferences, and personal events (like his sister’s recent graduation weekend), Micah is not sitting still this summer!

Tell us about how you landed your internship at HHS this summer.

I heard about the AAPD internship program from my mom and thought it sounded like a good experience.  I applied once before, but wasn’t picked.  So I tried again and this summer I’m one of 30 or so people interning in Washington.  I wanted to work at HHS because I met Sharon Lewis at a conference and we became friends.

What is a typical day like at HHS?

Well, every day is different.   But I have spent time doing research on guardianship and voting rights.  I learn about the health care law.  I now know that getting a physical regularly is covered.  I’ve also supported the CRPD (U.N. Convention on the Rights of Persons with Disabilities).  It needs to get passed.

Why is the CRPD important to you?

It will help people travel more outside the country and have a voice at the table.  It’s important for us to support it.

Let’s talk about the good and the bad of your summer in Washington experience.

The best part was going to the ADA celebration at the White House. Tom Perez, the Secretary of Labor, spoke.  He’s done a lot for people with disabilities.  President Obama was not there because he’s a busy guy.

The worst part is by the end of the day, I’m tired of sitting in front of a computer screen.

What else have you been doing, besides working, here in Washington?

I went to a Nationals baseball game, which was a lot of fun.  I saw the FDR Memorial. And soon I’m going to the Newseum with AAPD.

What’s next for you?

I will go home to Michigan for a few days of rest.  Then I go back to Syracuse University, where I’m getting my certificate in disability studies.  I’m a teaching assistant too.  And I will continue to look for speaking opportunities.

This summer, I learned a lot and met lots of people.  Maybe in the future, I will work here.

We at The Arc wouldn’t be surprised to see Micah again in Washington, working full time or as a self-advocate for important issues like the CRPD.  Thanks for sharing your experience with us, Micah!

What Does Your Family Need?

Family Needs AssessmentFamilies which include members with intellectual and developmental disabilities (I/DD) have a variety of needs from obtaining healthcare to navigating social service systems to emotional support. And, these needs can be substantially different from the needs of families who do not have a member with I/DD. That is why organizations such as The Arc exist: to help families meet those unique needs.

Now, an international team of researchers is working to identify and prioritize these needs and compile the data into a report that will help organizations such as The Arc, early intervention programs, family-related and human service organizations better understand what needs are the most critical to families and seek funding to provide for those needs.

Can you help? If you are the parent of a child with I/DD from birth to age 21, you can take this online survey, called the Family Needs Assessment (FNA) and help us understand exactly what your family needs to thrive.

But the FNA survey is not just about collecting research. In addition to providing crucial information, the survey is designed in such a format that families can use it in their planning processes for obtaining specific family support. And it will provide immediate links to the best online resources for each type of need identified.

The survey consists of 75 “needs statements” that relate to 11 areas of family life including health, daily care, social relationships, family interaction, spirituality and economics among others.  Each individual taking the survey will rate the extent to which specific “needs statements” represent a need for their family on a 5-point scale. If you would like to take the survey, it should only take 15-20 minutes to complete. Find out more and start the survey at the at the Beach Center on disability at the University of Kansas website.

Shining a Light on Violence Against People with Disabilities

On any given day in the United States, someone with an intellectual disability becomes the next victim of violence, and usually without much notice. This month, for example, a house manager at a group home for adults with intellectual disabilities in Maryland was charged with multiple counts of assault and reckless endangerment for physically abusing a resident. No one would’ve ever known, except the assault surfaced in a YouTube video providing clear evidence of the crime. And, one ESPN producer reached out to The Arc and other disability organizations recently about a story involving a coach accused of sexually assaulting a 15-year old participating in Special Olympics. Upon further research into the issue, the producer was so alarmed by the sheer number of people with disabilities who are sexually assaulted that they requested others to speak out in an effort to expand their report.

To the shock and disbelief of many, these disturbing instances of violence are commonplace in the lives of people with disabilities. The National Crime Victim Survey reveals that people with disabilities are twice as likely to become victims of crime compared to those without disabilities. Even more alarming, people with intellectual disabilities are more likely to be victimized compared to those with other types of disabilities (such as physical disabilities). The Arc receives calls from all over the country – from concerned family members, friends and people with disabilities themselves – seeking help and answers. They often need to know what to do next, where to get legal assistance, how to help an attorney understand intellectual disability, and how to find a qualified counselor to work through the trauma of victimization. Traditionally, victim advocates and disability advocates have not shared expertise and resources to address this issue, but that has slowly been changing over the past few years, creating more opportunities for victims with intellectual disabilities to obtain much-needed services and supports.

April is Sexual Assault Awareness month and this week, April 21-27, is Crime Victim’s Rights Week. It’s a perfect time for chapters of The Arc, other service providers and advocates to reach out to their local victim assistance agencies alerting them to the high risk of violence and victimization that people with intellectual disabilities face throughout their lives. The Office for Victims of Crime created a guide in 2012 for states wanting to take a team approach, bringing together law enforcement, prosecutors, adult protective, human services and self-advocates, to ensure equal access to the criminal justice system for people with disabilities. And The Arc offers fact sheets on a wide variety of topics including the Abuse of Children with Intellectual Disabilities and People with Intellectual Disabilities and Sexual Violence.

My Definition of Autism

Andrew ReinhardtApril is Autism Awareness Month and The Arc and Autism NOW are taking this opportunity to ask individuals who identify as being on the autism spectrum to answer this question: “What is your definition of autism?” Andrew Reinhardt is working on a Master’s degree in physical science and has a diagnosis of Asperger’s syndrome. Below is his personal definition of autism. Follow the conversation this month online using #autismaware

By Andrew Reinhardt, Guest Blogger

Being on the autism spectrum to me was at one point in time a defining characteristic of who I am.  It is not anymore.  I’ve largely grown out of needing to define myself in such terms.  I am a very active individual, albeit not as active socially as I would like to be, but in terms of academics, work and family, I am very happy with my life and define who I am based on these parameters, and others.  This has some advantages, since I’ve seen time and again that having a disability, any disability, is not typically smiled upon in the hiring process or beyond in this country.  I’ve done best and even have tended to be hired more often when I learned to shut up and only open my mouth about having Asperger’s when it’s absolutely necessary.  Since I can pass for an individual who is not on the spectrum, at least at this point in my life, I find that it is better to not bring up such issues at all and play the part of so-called normalcy.

But still, Asperger’s still affects me in highly negative ways, though it affected me in worse ways historically.  I specifically avoid shopping at malls, or anywhere for that matter unless its grocery shopping.  I prefer to avoid eating out to ordering out.  These are habits born out of a general social anxiety, as well as several issues such as what to do with eye contact in crowds, the noise levels, the lighting, so on and so forth.  As bad as it is now, it was worse to the point of breaking out in hives during a full blown panic attack before.

This is progress, even if it doesn’t seem like it at times.  Historically, I’ve faced several problems worse than this, such as a severe fear of, and sensory problems with, insects, that caused me to run away from them to the point of running in front of cars at times.  I also was self-injurious at times when I thought I did something particularly bad, though in hindsight I’m not sure I’ve ever done anything particularly bad in my life.  All that said, though being on the spectrum has been a great bane to me throughout the years, it also has provided some good things to my life, for instance my mathematical skills, my analytical skills, and the drive to be more than I am today, the last of which is probably the most important because I’ve met individuals who have the skill, but lack the drive to do anything with it.  I contend that because of my life on the spectrum, particularly the hardships it’s caused, I’ve done better as an adult than I otherwise would have.

Planting Trees (Or How I Learned How to Plan for the Future)

Amberley, Caroline, and WillBy Amberley Romo

My family moved a handful of times when I was growing up. Every time we did, my parents would obsess over the trees. They’d discuss which kind of tree would be best-suited for where they wanted to plant, and, most importantly, the longevity of the tree. They were usually young trees. ‘They’ll grow,’ they said.  Even if we probably wouldn’t live there to see them mature, it was important to my mom and dad to leave deep, strong roots in the ground.

My younger sister Caroline was born with a neuro-genetic disorder called Angelman Syndrome. She’s nonverbal, but astoundingly effective at communicating with an assistive communication device, modified sign language, and, well, pointing. Before I went to college, being one of the roots in Caroline’s tree was just a normal part of my life. Although my parents encouraged me to go off to college where I wanted to—yes, even if that meant leaving Texas – I felt guilty and a bit selfish (‘I really only have to worry about myself now?’). I sought out work with organizations that served people with disabilities like Caroline’s. Now, I work for a national disability organization, but I’m still not home to help take care of my sister.

My parents always reassured me that they would take care of Caroline. They would make sure the necessary financial structure was in place, that, should anything happen to them, everything was prepared. ‘Take the pressure off yourself,’ they told me. How can I take the pressure off when I work down the hall from The Arc’s policy team? When I hear every day about the very real threats to supports and services for people like Caroline?

Amberley Romo 2In June, Caroline will turn 19. I am 22. We’re entering a new part of our lives. A part where I simply can’t assume everything will be taken care of anymore. Here comes the part where I have to know about SSI, and I need to know things like the fact that if an SSI/Medicaid beneficiary has more than $2,000 dollars in their name (whether via a thoughtful gift, or as a beneficiary in a will, savings, etc.) they can be disqualified from their benefits, and…and…and…

I went home two weekends ago to participate in our first-ever Person-Centered Planning meeting. I had never heard of Person-Centered Planning before, but my mother had found a facilitator and was convinced it needed to happen. It needs to be a celebration though, she said. This isn’t just a meeting. We want to make it a party. She fussed about buying favors for the guests, and festive cocktail napkins for the snacks. There was Tex-Mex.

And one by one, various people who are, or have been at some point, roots in Caroline’s life rang our doorbell. Her behavioral therapist, her cheerleading coach, a former school aide and frequent sitter, family members… Fourteen in all.

We introduced ourselves and milled about, strangers drawn around this one vibrant, 18-year-old focal point, and when called to order we drifted into the living room. Caroline waited in the living room the entire time, seated comfortably on a dining room chair placed front-and-center, legs crossed, hands clasped eagerly. We had worried that the situation might be over stimulating for her, that we might see some acting out. Not so. Yet again I underestimated her. She sat on her throne, grinning like the cat that ate the canary, soaking up every minute.

The concept of Person-Centered Planning is that by brainstorming with all of these different people, who all play different parts in Caroline’s life, we will together be able to form a more complete picture of who she is, and how to support her. We already know she tries to get away with things at home that she doesn’t at school and vice versa. (The girl does know how to work people with her smile). So the people who know her at school know a different side of her. (Any high school kid who acts the same way at home as they do at school, please stand up. No one? Moving on.)

For an hour and a half, we considered very deeply what makes Caroline who she is. What does she like and dislike? Who is important in her life? What are her strengths and skills? If someone didn’t know her, what would we think they needed to know in order to ensure continuity and satisfaction in her life? The planning conversation is not one that comes up lightly. My parents know they won’t be able to care for her forever. They’re teaching me that skill they learned long ago—how important it is to start early, to lay down deep, secure roots. I don’t like to think that things will ever change. I don’t like to think that they won’t be around, and I don’t like to think of Caroline living anywhere but with family. I’ve argued with them tearfully that it doesn’t matter where I am in my life or what I’m doing– when the time comes I’ll be her caregiver, I’ll always have enough to provide for her, I’ll do this, I’ll be that. But hoping for the best is not a plan. Even planning well doesn’t guarantee anything. In a world without guarantees it is crucial to plan so that Caroline can continue to blossom, and, to the best of her ability, always be included in decisions about her life.

There is no perfect time to plan. There’s no good time to confront your own mortality, or the other hard truths that necessitate future planning. As siblings, that relationship is often the longest we experience. We are an important and vital part of our siblings’ lives. We deserve to be a part of the process, and it’s vital that we start the hard conversations with our families, if they aren’t already happening.

National Siblings Day is a great day to stop for a minute to think about these things. Or, if not today, a birthday, or an anniversary– any milestone to attach this important conversation to. There will always be a reason to push it back, put it off. But it’s too important for that. We plant the trees so that, someday, there will be shade.

Amberley Romo currently works at The Arc’s Washington, D.C. office as brand coordinator. She is a member of The Arc’s National Siblings Council, and the DC-area chapter of the Sibling Leadership Network, DC Sibs.