Thursday, August 28, 2008

Every Child Has Special Needs?

Got back from several days in Chicago yesterday, weary but happy. It was the first time I've ever taken a trip alone with dsds15, and it went very well. We stayed in a hotel near O'Hare with ds23, who was in town on business. This was a great help to me, as I could take a shower without worrying that my youngest was downstairs hailing a cab or something, because his big brother kept an eye on him for me.

Came home very tired, and found this in a homeschool email newsletter I receive:

Todd Wilson, Familyman Ministries

I have special needs children. In fact, ALL my children are special needs children. First, there's Ben (15) who really needs me to listen to him talk . . . because he talks a lot. Then there's Sam (13) who likes to tease but who needs me to know when it's time to stop teasing and be understanding. Katherine (11) needs me to be extra gentle during these "changing" years.

Ike (9) needs lots of one-on-one attention. Abe (7) needs snuggling and closeness. Maggie Rose (4) needs me to help her use self-control. Cal (2) needs me to read books to him and Jed (7 mos.) needs me to smile at him.

Now before I get an angry note from some well-meaning mother who insists that I'm making light of or minimizing special needs children, let me say that I am not doing that at all. I know some of you have children who demand incredible sacrifice and labor on your part. I know you lie awake at night wondering if you can make it through another day. I'm certainly NOT trying to equate my "special needs" kids with your "special needs" kids. But I am trying to point out that ALL of our children have special needs and that we've done our children and ourselves a disservice by labeling our special needs children as "special needs." They're just children like all the rest.

Yes, they have special needs, but as I've already described, all children do to some extent. Amazingly, God has given you the abilities to meet those special needs and has given your children the mom and dad just right for them. You don't have to feel inadequate or apologize for their lack of progress, or label them as a "special needs" child.

All you have to do is love, train, and prepare them for THEIR future. Oh, yeah, and one more thing . . . . . .
Be real,

Wow. That didn't sit real well with me yesterday. I pictured myself reading that back when my son was little and we were trying to adjust to homeschooling three kids while caring for a toddler on an apnea monitor who couldn't keep weight on because of severe reflux, and I think that attitude (no matter how well-meaning) would have really hurt me.

Also, having just seen family in Chicago who have a daughter (our niece) with delays of unknown origin and how they have to fight to get the right kind of education for her out of their local school district, and having some idea of the pain they have gone through with and for her, his message kind of got me going:

Hi Todd,

I read your column in TOS' THM occasionally, and usually find it amusing. But I've got to tell you that you stepped in it today. I get your drift about all of our children having special needs, but you're off track here, and I'm afraid you probably hurt some parents of children with disabililties.

We have four kids, currently 15, 17, 23 and 24. They were all homeschooled from birth. Like your children, they're all special. But our youngest has Down syndrome, and let me tell you, once you have a child with true special needs (i.e. mental retardation, not a need for extra hugs), your entire life changes, and it will never be the same.

Todd, kids with special needs aren't kids like yours (and my older three) who simply need to gab a lot or snuggle a lot. We're talking about kids with major physical and/or developmental issues. This is life-changing stuff, not "Love Language" preferences. Flip through an issue of the wonderful magazine NATHHAN puts out and you'll see what some families' daily lives are like. You might also want to read The Dance Goes on by Roberta Bandy for a true-life description of the joys, blessings and heartache of a Christian family whose oldest son was born with a chromosomal defect.

I'm certain you didn't mean to offend anyone, but some of your comments came across as a bit flippant, to say the least. Like you, we have a 15-year-old son who needs us "to listen to him talk...because he talks a lot." Of course, his speech is extremely delayed, so we have to work to understand him. He may well be telling us about what happened in one of his beloved Winnie the Pooh videos, which he's told us a hundred times before, but it's important to him, so we listen. BTW, at 15 he can't play outside by himself because he runs off and has no sense of danger. He was in diapers until he was almost eight.

We love him dearly, and are grateful that God gave him to us just as he is. But telling us or other parents that all we have to do "is love, train and prepare them for THEIR future" is incredibly naive. Newer parents of the disabled (who are still coming to terms with their child's disability) are likely to consider it insensitive, and I would agree.

Todd, be real: please consider issuing an apology.

Barbara Frank

Each of my kids is unique, no question. And they are all special and very dear to their dad and me. But one of them does have special needs. We didn't give him that label. He got it when he arrived with an extra chromosome. It is what it is.


Leslie said...

Yeah I read that and thought it was going to get him in hot water LOL. He seems clueless about what some people go through.


Janet said...

Glad you wrote a letter back. The truth is, a special needs child DOES require extra. It's just the facts.

Sandy said...

That article didn't set well with me either, and I don't have any children with special needs. We all have days where we need to be listened to and days we need extra hugs. Those are not special needs, those are regular, ordinary human needs. The fact that this author thinks those are special things puts him a little out of touch with all children, not just special needs children. Some children are not 'just children like all the rest'. He really does need to issue an apology. It appears that he probably knew that before he published this given his third paragraph. Yikes.

Barb the Evil Genius said...

I was going to say something like Sandy did. Needing someone to listen and understand you or needing some extra hugs on certain days is *human* and everybody has those kinds of needs at one point or another. Special needs is just that, needs that are special to a smaller group.

Katherine said...

I wonder if he was talking about the way kids are 'labeled' if they don't fit into the mold that public school seems to want to force them in to? I have some friends who's kids were labeled as 'special needs' when they really seem to not be truly special needs, but just cut from a different mold. I think sometimes people who's kids are labeled like this use it as a crutch or an explanation for bad behavior in their children. If he wasn't talking about that, then totally, he was off-line on that. If he was talking about that, he probably should have explained further, rather than lumping them in with kids with true special needs.

Anonymous said...

I too was thinking the same thing that Sandy said. And I thought you did a great job in your letter to make it clear tht he was out of line yet you did so in a respectful way.

Amy said...

Bravo Barbara!

Parents who don't deal with children with special needs will never understand what we go through - they won't know the blessings either. I've always had problems with those saying all children have special says nothing about those of us who spend the majority of our time keeping our children alive and safe KNOW the extra demands and creativity that parenting a child with special needs means.

Mary Ellen said...

Wow, Barbara!!! You go girl! Thanks for speaking for all of us who have true special needs children. As I read Todd's comments, I found myself getting more and more anxious, wanting to say to him 'you're crazy'. I have a typical 16 year old daughter with all of the typical 'stuff' that goes along with that. Then I have a 13 year old daughter on the spectrum, and she is homeschooled because the public school spent 5 years trying to teach her and failing miserably since they were incapable of figuring out her unique learning style. Thankfully, we pulled her from school and she is thriving at home. All this to say, anyone can parent their typical children, even when they become teenagers! But, it takes a special family to raise a special child and I am proud to be in one of those families. Our lives are so much richer and it is all because we look after the truly special needs of our daughter while experiencing life through her eyes!
Thank you, Barbara, for saying so eloquently what many of us are thinking.

Barbara Frank said...

Leslie, I did wonder if he knows anybody with a child with disabilities.

Janet, it seems obvious, doesn't it?

Sandy, the third paragraph definitely did not sit well with me!

Barb, the phrase "special needs" seems so basic!

Katherine, I don't think that's what he meant, since he used it to refer to all of his own kids.

Pam, thanks! I was trying to behave myself ;)

Amy, you and I are coming from the same place, aren't we?

Mary Ellen, so glad you've found a solution for your dd!

Thanks, everyone, for taking the time to weigh in on this.