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What is it like to have a child with a disability? Emily Perl Kingsley wrote a beautiful
essay that is used throughout the world to explain. Welcome to Holland brilliantly read.
essay that is used throughout the world to explain. Welcome to Holland brilliantly read.
How can I Support My Family & Friends?
If you are someone who loves and wants to support a friend or family member who has a child with a disability here
When a child is born--the response is always "Congratulations. He/she is beautiful". Not I'm sorry or any other thing
that is pitying.
Don't ask what is wrong with the child and when will he/she get better. Instead ask, "what is the doctor saying about a
diagnosis?" "Can you tell me more about what is happening"
Don't ever say, "You are such a special person, God only gives children like this to people who are strong enough to
handle it" That is BS. Have you read the paper, there are many parents who can't handle it. It is hard!!! I like what
Mother Theresa said when people would say that abut her, "I know God will not give me anything I can't handle. I just
wish that He didn't trust me so much."
Don't ever ask a parent if or when they are going to institutionalize their child. That one wants me to hurt someone.
I recently shared my story of Samuel with friends I met on line. They made wonderful comments that were incredibly
supportive. We can all learn from them:
"Thank you for sharing that with us! He looks so happy and sweet. I am sure there are rough days for you at times,
but you seem like you have it way under control and please let us know how we can help".
" What a handsome guy!!! I grew up with a really good friend whose brother was very similar to how you describe
Samuel, and I have the fondest memories of our time together. In many ways he was the glue for the family - his love
was just so contagious. Thanks for sharing about Samuel - and we're here for you.
"You have our support. Although, I have no idea the struggles you have faced as a family I know what it is to love a
son....know I am here to listen. I like learning and I believe you have a lot to teach! "
" Samuel has an amazing smile and an amazing mom. Thank you so much for sharing him with us. "
" He is a beautiful boy. I know that of course, life is sometimes hard, but I can see from his face why he brings you
such joy. And you can count on us being there for you ."
So what does it mean to "Be there for you"?
Sometimes it means bringing ice cream. The most caring and meaningful thing that ever happen to us on our
journey, was when Samuel was just diagnosed. Our next door neighbors, came over with a variety of types of ice
cream, bowls and spoons. We just sat on the porch and eat ice cream and didn't say anything at all. But they were
there and we knew that they were there and at that moment that was all we needed. They know who they are and
they know we will never forget that evening.
I am always happy to answer questions about Samuel and what it is like to be a parent of a child with a disability. So
feel free to ask. However, some parents aren't there yet and may never be. So tread lightly--Bring Ice Cream!!
Thank you to all my on-line friends, all of my other friends and family. This is a hard journey, but having you in our
lives makes it a little easier.
From the Letkidsplay.blogspot.com site March 14, 2009
When a child is born--the response is always "Congratulations. He/she is beautiful". Not I'm sorry or any other thing
that is pitying.
Don't ask what is wrong with the child and when will he/she get better. Instead ask, "what is the doctor saying about a
diagnosis?" "Can you tell me more about what is happening"
Don't ever say, "You are such a special person, God only gives children like this to people who are strong enough to
handle it" That is BS. Have you read the paper, there are many parents who can't handle it. It is hard!!! I like what
Mother Theresa said when people would say that abut her, "I know God will not give me anything I can't handle. I just
wish that He didn't trust me so much."
Don't ever ask a parent if or when they are going to institutionalize their child. That one wants me to hurt someone.
I recently shared my story of Samuel with friends I met on line. They made wonderful comments that were incredibly
supportive. We can all learn from them:
"Thank you for sharing that with us! He looks so happy and sweet. I am sure there are rough days for you at times,
but you seem like you have it way under control and please let us know how we can help".
" What a handsome guy!!! I grew up with a really good friend whose brother was very similar to how you describe
Samuel, and I have the fondest memories of our time together. In many ways he was the glue for the family - his love
was just so contagious. Thanks for sharing about Samuel - and we're here for you.
"You have our support. Although, I have no idea the struggles you have faced as a family I know what it is to love a
son....know I am here to listen. I like learning and I believe you have a lot to teach! "
" Samuel has an amazing smile and an amazing mom. Thank you so much for sharing him with us. "
" He is a beautiful boy. I know that of course, life is sometimes hard, but I can see from his face why he brings you
such joy. And you can count on us being there for you ."
So what does it mean to "Be there for you"?
- It can mean just listening.
- It can mean going on the Internet and learning more about the disability so that you can understand what the
parent is talking about. - It means asking questions (when the time is right) and really listening to the answers.
- It means asking the parent to show you the child's routine so that you can help if the parent isn't available.
- Offer to babysit or provide respite care--and mean it. Ask the parent what date you should put on your
calendar to come over to babysit, because they won't ask you. - It can be getting as mad at a stupid doctor, teacher, school district as the parent.
- It can mean rejoicing when something good happens. A friend of mine's 3 year old just learned to clap.
Clapping is a huge neurological milestone. So instead of saying that's nice or she hasn't clapped before--go
and buy a bottle of wine and celebrate this milestone. It is as if another child just got accepted to the college of
their choice. - It can be understanding the implications of when the alternative caregiver, like a nurse, doesn't show up. How
that one person having her own family emergency, puts your entire family out of sorts, raises the stress, and
can mean that other people in the family can not do what they had planned for the day. - It can be offering to transport the siblings to play practice or soccer or whatever, even if it is a little out of the
way. That way we don't have to load every one in the car with all the equipment or all the behavior and the
sibling doesn't have to miss out on their life. - It means never using the word "retard" or "retarded" and stopping anyone else you hear using the word. It is
so offensive. - Learn to use first person language. You can go to this site to learn more about it.
Sometimes it means bringing ice cream. The most caring and meaningful thing that ever happen to us on our
journey, was when Samuel was just diagnosed. Our next door neighbors, came over with a variety of types of ice
cream, bowls and spoons. We just sat on the porch and eat ice cream and didn't say anything at all. But they were
there and we knew that they were there and at that moment that was all we needed. They know who they are and
they know we will never forget that evening.
I am always happy to answer questions about Samuel and what it is like to be a parent of a child with a disability. So
feel free to ask. However, some parents aren't there yet and may never be. So tread lightly--Bring Ice Cream!!
Thank you to all my on-line friends, all of my other friends and family. This is a hard journey, but having you in our
lives makes it a little easier.
From the Letkidsplay.blogspot.com site March 14, 2009
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