Special Needs Child or Child w/Special needs

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erindanakmp

New member
I am new to this group, however I am a part of Cystic-L and this is a message I posted this morning. I received alot of interesting answers. Just thought I would ask here as well! Thanks eveyone!

Hi Guys,
Something has been bothering me this morning. As some
of you know, I have a company that makes health
journals for people with CF, other illnesses, as well as healthy
people.
I received an email this morning that upset me, and I
was hoping you all could set me straight. It was from
a woman who has a child with Down Syndrome. (I made
journals for DS also) She was upset by an email I sent
out regarding Paige, in which I stated that I had a
special nees child, a child with Cystic Fibrosis.

She was upset by my use of special needs child, she
says that it should be child with special needs. She
was offended. Now, I sent her an email apologizing, bc
first and foremost, I dont want to hurt or offend
anyone. She said she felt the need to educate me. And
that is fine, I just want to be able to provide health
journals to people who need them.

My question is this, first of all, I was referring to
my OWN child when the phrase in question was used.
However, I don't want to offend others, so is that
infact, the wrong phrase to use?

My other child, Keenan-Michael, is in the gifted and
talented program at school. He is often referred to as
a gifted child. (along with his name obviously)...This
doesnt offend anyone.

I just never want Paige to think she has to seperate
the CF from her. It is very much a part of who she is,
NOT EVERYTHING she is, but it will shape her life, and
our families. She is a child with CF, a CF child, a
beautiful child, a child WITH beauty.....
Please Please, correct me if I am being in any way
wrong with this. Like I said before, I want the
parents I talk to ..to find the journals useful for
their child. I receive so many wonderful emails, and
this is just one that bugged me. I certainally don't
want to "hurt" the ones I am trying to offer some
small amount of help to.
Sorry so long!
Thanks guys,
Erin
Mom of Paige 5wcf, Paiges Mom, (either way you say it,
its a wonderful thing) ANd KM 10wocf,
Owner of The Little Acorn Health Journals for CF and
others
www.thelittleacorn.net
 
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Emily65Roses

New member
First of all, by the definition of the words "special" and "needs," I would say CFers fall under that category, no question. But either way, I'm not easily offended. Special needs doesn't bother me. Handicapped doesn't bother me. Disabled doesn't bother me. I wouldn't necessarily use all the terms to describe myself, but if someone else uses them, I don't really care. Unless, of course, it's quite obvious that they mean it in a discriminatory manner.
 
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julie

New member
I think it depends on the severity of ones illness. One child with CF may be a special needs child and anothe may not be, because of the problems they have. Either way, You can make all of the people happy some of the time, and some of the people happy all of the time, but never all of the people all of the time. I think that there is always going to be those one or two people that are going to have a problem. So if the verbage you choose to use works for you, so be it. At least you care enough to put the information out there and i think she shounds a tad ungrateful.

good for you,

Julie (wife to Mark 24 w/CF)
 
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cfgirl38

New member
Hi Erin, I also am on cystic-l and I wrote you to let you know I agree with you. I don't feel you did anything that I wouldn't have said myself. I think that even with the severity of ones disease you still have speical needs. Whether you need to assist them or not there still speical needs. I don't know why people get upset with a lable unless like Emily said it would be meant in a discriminitive manner. But just to address someone, I dont think is insensitive in any way.
 
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anonymous

New member
Hi There,
I don't think special needs child or child with special needs makes any difference?
Either way it is simply saying a child that has other requirements outside of the norm.
I think that sometimes people take things a little to seriously.
Rebekah
Mother to Matt 22mths w/CF and baby on the way wo/CF
 
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anonymous

New member
I cannot figure out why she would be offended by that! There is probably no better way to describe a CF child than to say "special needs." Her child has down syndrome, which of course, comes with a different set of special needs but it certainly doesnt make her situation anymore challenging. That was very nice of you to apologize, but I also hope you took the opportunity to enlighten her a little about the chronic needs of CF. I would invite her into my home any day, I bet she would leave with a different opinion about the "special needs of a CF child."

Caren
mom to Jordy 11 w/CF and Nathan 8 w/out CF
 
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anonymous

New member
First, my opinion is that one can refer to one's child with CF however one feels most appropriate, so you've done nothing "wrong."

That said, over the years, I have done much volunteering working with various groups focusing on kids with disabilities and became aware of the "person first" movement in the disability community. Imagine my surprise when this all became much more personal 19 months ago when my youngest was diagnosed with CF. This movement emphasizes focusing on the person, rather than the disability. I did a quick Google search on "person first" and this sums it up nicely: "Disabilities are not persons and they do not define persons, so do not replace person-nouns with disability-nouns," (<a target=new class=ftalternatingbarlinklarge href="http://www.asha.org/about/publications/journal-abstracts/submissions/person_first.htm).
">http://www.asha.org/about/publications/journal-abstracts/submissions/person_first.htm).
</a>
There are also many who feel this is political correctness gone too far. In the same Google search, I came across an essay by an autisitc person (how he refers to himself) at <a target=new class=ftalternatingbarlinklarge href="http://web.syr.edu/~jisincla/person_first.htm.">http://web.syr.edu/~jisincla/person_first.htm.</a> He argues that autism cannot be separated from who he is and it's foolish to refer to him as a "person with autism."

Finally, I try to use person-first terminology, but I don't get offended if someone else does not. I try to keep the Platinum Rule in mind, "Treat others the way they want to be treated," which is quite different from the Golden Rule.

Chris, Father of 22-month old with CF
 
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anonymous

New member
Erin,
I have a child 18 with DS and a child with Asberger Syndrome and I take no offense but I have heard that you should not say special need child But you know what you can't please everyone and I take no offense.
Sandy
 
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CheerColl

New member
Erin,

I don't think you owe ANYONE an apology!! It would be ridicuous to say that people with CF don't have special needs!! Obviously the mother who tried to call you out is much too absorbed in her own problems to realize that other people's lives have difficulty too, even if they aren't exactly like her (and her child's) problems.

I certainly recognize that the needs of a child with Down Syndrome are completely different that those of a child with CF, but this does not negate the fact that your daughter Paige does in fact have special needs!

You are such a patient person, and I admire that about you. Don't second-guess yourself, you have a great head on those shoulders! You have all my support.
 
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2sickkids

Guest
Some people just get offended easy. My sons have CF. I don't think what you said was wrong. My baby is hearing impaired has poor vision and is developmenaly delayed as well as having CF. Also may have CP. I don't refer to my children as having sp needs per say. But would not be upset if others did. I do think it's odd the lady felt she needed to educate you though. Who's to say what sp needs are worse. A kid with any condition that requires extra care has sp needs as far as I can tell.
 
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