Autism, Uncategorized

My hobby, my life



I feel like having a special needs child is almost like a hobby that you didn’t ask for.  You have to learn all about it.  It can engulf entire days.  It permeates your life – your whole life.  You have to get good at it – sort of a sink or swim mentality.  I remember when we first began to suspect that our son was different.  He was about 2 and a half.  We started calling around to different doctors and no one would even really talk to us about it saying that they thought he was too young to even look at about having a disorder.  (Now the theory is that ASD can be diagnosed at or around 18 months.)  We knew though.  We knew there was something not right.  We would ask other people and family and everyone would tell us not to worry that he was just “fine”.  I hate that word by the way.  “Fine”.  There is nothing more generic than “fine”.  Ugh.  Anyway.  And he got older and we had a second child who was so different and was checking off those milestones like it was a to-do list.  At some point during M’s third year, I remember having one of my lowest points as a parent.  I’m not proud of it, but I try to keep it at the front of my mind to remind myself that I did get past that point and moved on.  WAY on.  Time changes people, situations, and time heals.  I remember being so very overwhelmed by M and thinking, “we just can’t have a child like this, this just can’t be his personality.  Is he really like this?  Is this permanent?”.  Well, that was 5 years ago and I can tell you, it is permanent.  He IS really like that.  That really IS his personality.  It really IS ok.  It doesn’t look “average” or “normal”.  We do attract stares and I’m sure we inspire a lot of conversations.  Hopefully the good kind of conversations about how to interact with children who may have special needs, but who knows.  I really did survive, and possibly have even come out a better person on the other side.  M has taught me literally how to expand my heart.  How to expand my love for my children.  Now I just take it literally a day at the time.  We have great days and well, days where we just go to bed and try it again the next morning.  I have learned so much.  SO much more than I ever wanted to know about autism.  I have learned to trust my gut as a parent to M and that I know what he can do (when to push him) and what he may need help with (when to take it slow).  My skin has gotten a lot thicker.  I was at Target last week and M was with me.  He was tired.  He’d had a long day and we just had to pick up a few things before going home.  I was shopping and at one point he just laid down on the floor.  He wasn’t in the way.  He wasn’t even making a noise.  He was just tired.  He’s 8 and tall so he doesn’t really fit in the shopping cart anymore, otherwise I would have put him in there.  (Until recently, I did that.)  Whenever I would start to move the cart he would get up and we’d go on to the next aisle or spot I needed to look and he would sit or lay back down on the floor.  This continued on and eventually I saw this woman just gaping at us from the end of the aisle.  Hey, that’s ok with me.  His behavior was the best that he could do at that moment and I don’t walk around expaining my familial medical history to everyone I encounter.  I glanced at her and M and I kept going with our shopping.  I almost immediately forgot about the encounter by the time I got to the car and then I thought, “hey!  About 2 more crazy looks like that from people in public and I’m not even going to notice anymore!!”  I was so proud of myself.  Heck I was proud of M.  Not sure if you’ve ever seen an autistic meltdown in public, but they’re not fun and that could have happened.  It didn’t.  He held himself together and I tell you that’s not nothing.  If Jane Q. Public has enough spare time in her day to spend staring at people in stores giving them the evil eye, that’s her business.  I don’t have enough spare time to worry about that.  Staring at my child is not going to cure his autism just in case you are wondering.  (I think that might be a bumper sticker).  Do I still worry about M and what the future will bring?  Of course.  Daily.  I’ve also seen how far he’s come though and we have a long way to go.  I read a lot.  I do a lot of trial and error.  I apologize a lot.  Its my hobby I didn’t ask for.  We’ll figure it out as we go along.

*Staring doesn’t help.  An understanding smile might.  Be nice.



2 thoughts on “My hobby, my life”

  1. This was inspiring! My mother-in-law had a daughter with spina bifida myelomeningocele and I know that became a HUGE part of her life. There was so much she had to learn about it, whether she wanted to or not. Those moments and your patience make you a great mother!


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