Sunday, July 27, 2014

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!

1 comment:

  1. Great post, with lots of thoughtful and useful tips. Thanks for writing this!

    What about family photos and the ever-present camera phones? Is that an issue of Nate? I know that extended family and friends often either exclude my special needs child (whatever their reasons for that) or don't show a lot of consideration for getting flattering or complimentary shots of him. How do you handle that?