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.
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. Ifyou 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.
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…)
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.
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.
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.
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.
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!
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!
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.
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.
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.
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!
