In the beginning there was this
beautiful - perfect child -
10 fingers, 10 toes, big ole smile that just melted your heart and took
your breath. You would study them, unbelieving that this beautiful,
fragile itty bitty life was placed in your care. Your heart overcome
with love, knowing instantly that there was/is nothing you won't do for
this child. No signs that anything was wrong... at least not right away
in most cases.
I remember when we finally realized that something was "wrong" not developing properly
with the boys. Our first indicator was that Daniel was taking longer to
do the things Anthony was doing. That he seemed "delayed". I filled out
the "15-month" ASQ (Ages and Stages Questionnaire) for the boys, and
luckily my sister was with me. She read the questions aloud and wrote
down my answers (since Steve was unable to make it). I tended to the
boys while we waited for the doctor to come in. When we got to some
questions, she would correct me if she had noticed something different
than what I was thinking. She knew boys very well, she had been able to
help me quite a bit back then. She opened my eyes to the fact that
Daniel had taken longer to reach milestones than Anthony, and that he had not been talking.
He was only pointing and making impromptu sounds when he wanted
something. Then I realized that he wasn't doing other things that I
thought he had been. I came to the realization that we (me anyway) had
been seeing Anthony do things, and just figured I hadn't "noticed"
Daniel do them. I just "assumed" (which of course, we should never do) that Daniel was progressing the same as Anthony.
Everyone I talked to was quite adamant that we not get the boys "diagnosed", not allow them to be labeled. Get them assessed and pointed to the right services, but don't let them be labeled.
Maybe because I'm older, or because of what we went through to bring
our little babes home, something didn't seem right about not letting
them be labeled. Daniel was first assessed with speech and global
delays. This allowed us to get him speech therapy and an in home visit
by a special education teacher once a week. But by the time he was
almost two, he had a full regression. It took several months to get him
reassessed and "labeled properly" so that we could get him the services
he needed for autism.
Because of hoops we had to jump through to get Anthony the proper diagnosis also, we learned that it is better to have a child "labeled"
so they can get the services they need. Most people I've met said they
didn't think it was right to label them, it would follow them the rest
of their life. I look back and think, from the beginning I wish I'd
asked myself these questions (and answered them honestly and
realistically)...
- Does the label changes who they are? NO
- Do you think the label keeps them from doing something they should be able to do? NO
- Do you think the label will create a specific behavior? NO
- Do you think the label will make people will look at your child differently? Not if they can't tell by looking... Not if you don't say anything
- Who does that label really bother and/or affect negatively? ME
- Will the label do more harm than good? NO
- Will the label help my child get what he/she needs? YES!!!
Please
don't let society's issues - cloud the issues which need to be
addressed in your family. Don't let the "lack of a label" keep your
child or loved one from getting the help they need.
Love to all... From a mother's heart.
Lisa
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