Ten Tips for Visiting my Family by Rachel Nemhauser

In a few short weeks my older son Isaac will be having a Bar Mitzvah, and I’m kvelling. (Yiddish; bursting with pride). He’s worked for years to prepare, and, like generations ahead of him, will become a man in the eyes of our community.  Simultaneously, and not coincidentally, the Nemhauser family and Bellevue, Washington will be invaded!  Almost one hundred loved ones from around the country will travel to Bellevue to celebrate this incredible occasion with us, to show their love and support of Isaac, and to be together as a family on this special day.

I am overwhelmed with gratitude and excitement that so many people who mean so much to us are putting in an incredible effort to fly across the country to be with us.  I’m moved and can’t stop smiling with anticipation.  I’d be lying though if I said there wasn’t a degree of trepidation mixed in with the anticipation.  While Isaac is undeniably the main event, I have little doubt that Nate will do his best to provide the side show entertainment all weekend.

Having visitors can be tricky with Nate around.  Nate’s a little slow to warm up to visitors. If you stop by, you can count on being told upon arrival, “My house!  Leave!" He doesn’t bother himself trying to put his best foot forward, and really isn’t all that interested in a weekend dedicated to lavishing his older brother with attention.  Instead of demonstrating his growing vocabulary, emerging social skills, successful toilet training and full-body hugs, he’ll likely choose to scream loudly and often, refuse to greet visitors, and amp up the obstinacy he’s so good at!

For many of us raising children with disabilities, welcoming people into our homes can be stressful.  There is nowhere to hide the worst behaviors and deficits, and everyone can see the furniture he’s ruined (or is that just me?).  So, in preparation for our most welcomed and highly anticipated visitors, following are some tips for visiting our family.  I believe they can be applied to visiting the homes of other families with children with disabilities. 

1)      Focus on skills, not deficits.  When visiting our home, you will definitely notice Nate demonstrating inappropriate and unacceptable behaviors.  He will hit his mom.  He will scream when he doesn’t get his way.  He will be spoon-fed instead of feeding himself.  Keep in mind though, that for every “bad” behavior you see, there are other skills we’ve been tirelessly chipping away at.  Did you notice he’s toilet trained? He says please and thank you?  He most likely won’t undress in front of visitors? We work hard every day to improve, and we also have become very good at picking our battles!  Most importantly, we’re so incredibly proud of how far he’s come.  (I’m kvelling again…) 

2)      Transitions can be hard.  For us, it happens Every. Single. Time.  Nate doesn’t stop what he’s doing and move on to the next activity without some protest.  Sometimes it’s a little yell, and sometimes he’ll make your ears ring with his scream.  We almost never decide to NOT switch activities.  His protest doesn’t mean he doesn’t want to do what’s next, and it doesn’t mean he’ll protest the whole time.  Just push through, wait five minutes and he’ll recover. Ear plugs are optional but recommended.

3)     Remember that he understands more than he speaks.  Nate listens and understands what you’re saying.  His feelings can get hurt, and he can form ideas about himself based on what he hears people say about him.  Please be thoughtful about his feelings and self-esteem. Of course, he’s a fantastic secret-keeper so you can confide in him and know with confidence that his lips are sealed.

4)     Let him warm up slowly. Start with a wave from across the room, or maybe a high five.  Nate may not remember you from last time he saw you, and might be feeling more stress about your visit than he can express or understand.  Give him time and lots of chances. Be interested in his toys, his room, his favorite TV show, his xbox and his dog.  He’ll come around.

5)     Don’t take it personally.  Nate will probably tell you to leave, and maybe even to shut up while you visit.  He might turn his back on you and refuse to acknowledge your presence.  Please, please, please don’t feel hurt.  He isn’t intentionally trying to hurt your feelings, and is just expressing his discomfort in the only way he knows how.

6)      Ask lots of questions.  We understand that Nate is different than any other kid you know, and that much of what he does appears confusing or weird. It’s amazing though that once you know Nate better, a lot of his behaviors and language are more understandable. Ask us questions and we will do our best to answer them.  If you ask a question we’re not comfortable answering, we’ll let you know.  Mostly though, we’d love to tell you what we’re working on, which methods we’ve found helpful (and which we have found completely ineffective), and our thoughts about Nate’s future.  In fact, he’s one of our favorite topics!

7)      Give siblings all the attention they deserve.  While Nate’s antics can take up more than his share of the attention, remember that Isaac is here and deserves the spotlight too.  He’s quieter about it, and will probably not color on any walls or wet his pants, but he needs and deserves to have his family show equal interest in his goals, challenges and plans for the future. Just like Nate, he is an incredible kid.  In fact, show interest in his xbox and his dog and you’ll make him very happy too!

8)      Watch how we interact and do what we do.  The best way to learn how to be with Nate is to watch his family.  Mom, Dad and Isaac are Nate experts and know what works.  We know when to be firm, when to use distraction, when to offer a reward, and when to resort to a time out. Most everything we do is thoughtful and intentional, and done with years of experience behind it.  Be wary of offering suggestions, especially in the middle of a stressful situation.  It’s safe to assume we’ve tried everything (twice) and have zeroed in on what does and doesn’t work for us.

9)      Jump in to help. Don’t wait to be asked.  If Nate needs to take a walk during a long sit-down dinner, offer to take him.  If he wants company watching Justice League, sit with him.  If it’s bed time, offer to read him a story.  It’s not always easy for Nate’s parents to ask for help, but it’s usually very much appreciated.

10)   Love him for exactly who he is.  Nate is silly, loud, inconsiderate, affectionate, extremely messy and a total handful.  He can make you laugh, and then minutes later cause you to pull your hair out in frustration. He will drop a rock in your drink when you’re about to take a sip and tell you to shut up when you compliment his t-shirt. Love him in spite of it.  No, better yet, love him because of it.  Take time to get to know him and learn what makes him such an incredible, complex, multi-dimensional person.  Nate is one of our never-ending sources of love and happiness, and we are so overjoyed to share him with you.

 

 

Are you the parent of a son or daughter with a disability? What other tips would you share with people visiting your home? What do you wish everyone knew before walking through your door? We'd love to hear from you!

Birthday Boy

This crazy kid is 10 today. He can't read yet and talking is still hard for him, but he can tell me he loves me and gives incredible hugs. He is my dream come true that I never even knew I wanted.

Supported Decision-Making

Note: The following information is intended to give an overview of alternatives to guardianship in Washington State. It is for educational purposes only and is not a substitute for legal advice. For advice on making legal decisions, please seek the assistance of an attorney.  

Many parents of children with intellectual or other developmental disabilities assume that they will need to obtain legal guardianship when their child turns 18; however, while there are some cases where obtaining legal guardianship is warranted, it is often not necessary. Not only that, but Washington state’s guardianship law requires considering alternatives to guardianship first.

Begin thinking about supported decision-making options by making a list of your concerns. Is money management an issue? Self-care? Health risks? Exploitation? Write down all of the areas that pose a risk to your son or daughter's health and safety, and consider one or more of the following options as a way to address those concerns:

Representative Payee (Financial)

A representative payee is an individual or organization appointed by a government agency (such as SSA) to receive government benefits on behalf of an individual who cannot manage his/her money.

When friends or family are not able to serve as payees, Social Security looks for qualified organizations to be representative payees.

The payee’s responsibility is to use the benefits to pay for the current and foreseeable needs of the beneficiary and properly save any benefits not currently needed.

If you believe that your son or daughter is incapable of managing or directing the management of his or her Social Security or SSI benefits, call 1-800-772-1213 (TTY 1-800-325-0778) to request an appointment to discuss your concerns. 

Special Needs Trust (Financial)

Special needs trusts, such as the Developmental Disabilities Endowment Trust Fund, provide oversight and management of money held in the trust.

A special needs trust ensures that the individual’s resources are spent for the benefit of the individual.

Power of Attorney (Financial and Medical)

A power of attorney authorizes an individual to designate others to advocate on his/her behalf, including making medical and/or financial decisions.

Unlike a guardianship (authority from the court) or a payeeship (authority from the funding source), a power of attorney is given authority by the individual.

An individual can sign a valid power of attorney document if s/he has the capacity to understand what the document says.

Informed Consent (Medical)

To give informed consent for medical treatment, a person must have the mental capacity to understand the choices and make the decision.

If a person cannot make health care decisions by reason of mental incapacity, Washington law provides a way for someone else to make health care decisions on his or her behalf.

As with all other decisions, it’s important to always strive to give the individual the most decision-making authority possible; and, when not possible, to make decisions that the individual would choose for him or herself.

The following persons can provide informed consent on behalf of the individual in the following order:

• The guardian or parent if the person is under age 18;
• An individual to whom the person has given a durable power of attorney, including the authority to decide health care issues;
• Spouse;
• Adult children (over age 18);
• Parents;
• Adult brothers and sisters.

Vulnerable Adult Protection Order (Protection)

A Vulnerable Adult Protection Order (VAPO) can protect an adult with a mental or physical disability who is victimized by abandonment, abuse or financial exploitation. You can obtain a VAPO from the court even when the individual is unable or unwilling to seek help.

An example of when a Vulnerable Adult Protection Order may be a good alternative to guardianship is if an interloper "moves in" with a person with a disability and starts taking their food and money. In a case like that, a VAPO may provide quick access to orders protecting him/her from further abuse or exploitation, even if the individual is unwilling to seek help. Adult Protective Services also may assist.

Mandatory forms to use for these cases are on the court website.

For a printable fact sheet of Supported Decision-Making options, visit our Informing Families Fact Sheet page.

Still interested in guardianship?
Visit Informing Families, Building Trust to learn more.


ADDITIONAL RESOURCES

Disability Rights Washington

Washington LawHelp

Washington Courts Guardianship Training

Wings for Autism

The Arc of King County, in collaboration with The Port of Seattle, Alaska Airlines and Transportation Security Administration (TSA), will be hosting its second Wings for Autism® at Seattle-Tacoma International Airport on September 27th, 2014.

Wings for Autism® is an airport “rehearsal” specially designed for individuals with autism spectrum disorders, their families and aviation professionals. Originated by the Charles River Center, a local chapter of The Arc, Wings for Autism^® is designed for individuals with autism spectrum disorders, their families and aviation professionals. The program provides families with the opportunity to practice entering the airport, obtaining boarding passes, going through security, and boarding a plane.

Click here to register.

Recruiting Family Stories

As a follow up to “The Waiting Game” and the “No Paid Services Caseload” campaigns, we are planning to publish a booklet of stories that show people who have received services from DDA as a result of improved funding and policies in recent years.

We want to show the Legislature that the money they have appropriated for the unserved (in the 2013 and 2014 legislative sessions) is actually helping many people in a very real way all over the state.

An additional benefit will be to show the variety of routes that were used to gain services, such as:

• Calls to the DDA hotline;
• Help from a peer support network or organization (Arc, Parent/Family Coalition, Parent to Parent, Self-Advocacy group etc.);
• Connection to a case resource manager.

This will give us valuable information about those successful processes and routes that we can use to educate and help more people.  If they now receive MPC, but still need respite or another DD-specific service, hopefully that will be information we can also use.
If you or someone you know has moved from the No Paid Services caseload to paid services within the past few years, and you would like to share your story for this campaing, please contact Betsy McAlister at: dbmcharger(at)frontier(dot)com. Parents can remain anonymous, but we would hope to be able to have representative stories from as many parts of the state as possible.

This should be an exciting opportunity to showcase our advocacy and continue to support families and individuals with intellectual and developmental disabilities.