Thursday, December 19, 2013

Do I say?

One of the hardest things for me to answer to myself as a special needs parent is, "When am I supposed to say something?".  I mean, do I advertise that Ballerina and Music Man are Autistic?  Am I simply making excuses?  And does anybody really care?

When our journey was just starting out, I would tell everyone anytime we went out in public.  You see, it wasn't often that we WOULD go out in public and I would be in a situation where I needed to explain their behavior.  But, as we all got used to things and I started learning more and more, we would make that foray into the world more and more often.  And many times when we're out there, we get stares or awkward glances from people who recognize that my kids aren't behaving as one would expect.  And that's when I have to decide whether I divulge any information.

I could always tell when another Autism Parent was approaching me.  They would usually start the conversation.  Sometimes they would be blunt about it, asking me directly if they were "on the spectrum".  Other times, they would just hint around until I would divulge in the information, and almost every time they would point out their child(ren) and tell me that they understood as their child(ren) was also on the spectrum.  And, as long as I wasn't dealing with a tantrum, we would usually have an open discussion about Autism in general, the types of programs we were familiar with, and other topics that I now find fascinating that I never would have known about if I wasn't an unwilling entrant into the "club".

Making this decision was easy when they were 2 or 3 years old and they really didn't care one way or the other.  But they are getting older now.  They will be 7 in less than a month.  They are both considered to be high functioning......Ballerina is in a general education classroom and Music Man is working his way towards a college-bound high school diploma in his current special education first grade classroom (as opposed to a class mainly focusing on life skills).  They are starting to show signs of the development of a sense of self, and taking pride in that discovery.  Is it fair of me to advertise that they have a stumbling block in front of them, in the form of Autism, that they must learn to cope with?

But now their peers are also starting to notice and ask questions.  I was asked several times while they were in kindergarten why they act so "weird" (in the way that innocent 5-6 year olds ask to learn about the world around them).  When I first heard this, I won't made me angry.  But then I realized that they weren't trying to be mean, but to understand why, when everyone else fell into a single mold, my children didn't.  So, I always gave the simple explanation that they both just see things differently.  I always tell them that it's not a bad thing, but everyone is different and we all need to accept each other for who we are.  They always seemed to be satisfied with that answer.

But adults don't have that innocence.  Adults need more concrete answers.  They too see my children are "weird", but most won't just come out and ask as the kindergarteners do.  Many of them stare.  Many of them glare at them and at me when they see what they believe to be immaturity pouring from my children as they throw a fit in the grocery store because we are going down an aisle rather than up the same aisle.  Or why my child prefers to simply sit in the mulch and play with the wood chips when we go to the playground rather than run around or play on the equipment (especially when the park is crowded).

Is it my responsibility to my children to educate these onlookers?  Is it my job to explain to the world why not all children are the same?  Or am I making an excuse to hide my fear that they see me as an unfit parent?  I always tell the people for whom it's important they know.  Teachers, caregivers, doctors.....they all need to know that when they see Ballerina and Music Man, they are seeing a child with challenges that aren't necessarily apparent when they are first looked upon.

I guess this is one of the challenges for me as my children continue to grow.  My role as their mother is beginning to change.  Until now, I have been the one that they counted on for support and guidance for everything that they do.  Now they are starting to need to rely on others, including themselves.  I will still be there to help them in all ways that I can.  But as they continue to grow, they need to learn how to handle situations for when I'm NOT present to fight these battles.  I will not be with them at school to step in when a bully says something about them in a way that they can hear it.

There is a right way and a wrong way to face the world.  I just hope I am giving them the tools they need to successfully be able to face the world every day.

- - - - - - - - - - - - - - -

My name is Ilene and I'm a delinquent blogger.  Yup.....that's what I've become.  I keep meaning to sit at the computer and write and it just hasn't happened much in a VERY long time.

But I still have stories to share.

I (along with my husband) are raising 3 wonderful children and a crazy dog.  My kids are 8, 6 and 6 (the twins are nearly 7).  My older son is typical (with all of the issues that come with raising a typical boy) and the twins are both Autistic.  And I can't say "No" to activities with the PTA (where I hold a couple of positions), so I'm constantly running over to the kids' school.

If you would like to read some out-of-date stories, please feel free to check out my blog (My Family's Experience With Autism).  And perhaps, by the time you get there it won't be so out of date anymore!


  1. Your words explain what I went through and still continue to experience! My son's autism has become extremely noticeable with age and depending on my frame of mind at the time determines what I share! :)

  2. I remember that time in my sons life. As he has gotten older he chooses to tell people(or not) that he has Asperger's. I really feel that we don't owe anyone ANY explanations. Who cares what they think? It used to really bother me when he was much younger, and then I just got to the point where what onlookers thought was irrelevant. He is almost seventeen now and VERY able to advocate for himself:)

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