Monday, April 30, 2012

I Couldn't Imagine

I couldn't imagine a day when he would speak, but he did.
I couldn't imagine him being able to climb stairs on his own without falling, drink from a cup without spilling, eat with a fork and spoon on his own, and ride a bike, but he has learned these things.  
I couldn't imagine a day when he would be able to tell me his name, say yes and no, follow a direction when asked to do something, name objects and colors,  count to 10, but he can! 
These things did not come easy, it took months, or in some cases, years of practice for them to happen, and they still don't happen all the time.  But they happen.
Now I can't imagine a day when he will be able to read, write his name, have a real conversation, have a friend over to play, go to the bathroom on his own with no help or accidents.  Hopefully these things  will happen one day too and I'll have a new list of things that I can't imagine. 
Sometimes when I see other kids doing these things so easily, it hits me like a ton of bricks.  I feel angry or hopeless and wonder why it has to be so unfair.  Then, I have to remind myself to stop comparing and just keep up hope that anything is possible for my son too.  He will make his own progress in his own time.  Don't take the normal everyday things your child does for granted.  Celebrate every accomplishment, no matter how small.  It can be difficult, but each time life gets a little easier for my son, when he feels joy, or has more independence, I smile.

Monday, April 16, 2012

You've got a friend

I took this priceless photo the other day on a field trip with my son’s school.  So, my son has a friend, no big deal, right?  What?!  It might not be a big deal to you but whoa, it is a huge deal to me!  He doesn’t go on play dates, play outside with the neighborhood kids, and his invites to birthday parties are pretty slim. Now, I can’t lie, this is not your normal everyday friendship.  He actually hardly ever speaks to this friend, doesn’t really play with her, pretty much ignores her, and even runs away from her.  But, this persistent, precious, sweet little girl does not give up on him.  She says he is her best friend.  Her best friend. 
Beautiful words to a mother who has watched her son struggle to make a friend.  Sure, kids try to talk to him on a playground or at a park.  “What’s your name?” they ask, or they say something trying to start a conversation with him.  I watch holding my breath, a sinking feeling in the pit of my stomach.  I know what the outcome will be.  My son is sometimes interested and smiles, but he doesn’t know what to say to them, or how to say it.  Many times he just runs away, leaving the other child to move on to someone else.  Sometimes they will even come ask me, “Why won’t he talk to me?” or “Why is he being mean?”  “He doesn’t really know how to talk to you,” I say, “he’s not trying to be mean.”  “Why don’t you try to show him how to play your game?” I ask.  But, honestly, I know their frustration.  It is so difficult to try to talk to someone or engage someone that doesn’t talk or play back, and most of the time is totally happy being alone.   It can be heartbreaking at times.   
 But, this little girl in the picture above is relentless.  She does not care that he doesn’t talk to her.  She doesn’t think he’s mean.  She sees him, really sees him.  She tries to engage him, involve him, and help him every chance she gets, even when he doesn’t want her to!  I think she has a future career in speech, occupational or ABA therapy.  I know it will not always be this way.  As my son gets older, there probably won’t always be a little girl that wants to be his friend so badly and take care of him.  But, I can’t worry about that right now, today I’ll be glad that my boy has a friend.

Monday, April 9, 2012

Autism Awareness Month

The picture above is my family at our local autism society's recent autism awareness walk.  It is a wonderful  event that we have participated in for the last 3 years.  April is autism awareness or acceptance month, whichever you choose to call it, so I decided to write a post about a few myths you may or may not know about autism.  I guess I should also say these are things that my family has experienced that may not be true for everyone.  
1.  Myth- People with autism do not interact with others, don't look you in the eye, and do not like to be touched.  This is certainly not true in our case.  Yes, it is difficult to get my son to interact with others and look us in the eye, but he will do it and he likes people.  He is very interested, just doesn't quite know how to communicate with you.  As for not liking to be touched, he loves hugs and snuggles.
2.  Myth- People with autism don't understand you.  People with autism can hear you and can probably understand everything you are saying.  When I ask my son a question, he probably won't answer me.  He might just repeat what I'm saying, but he understands everything. 
3.  Myth-"Kids with autism just need some discipline.", or "He'll grow out of it." I've heard this time and time again.  Yes, I'm sure we could all discipline our kids a little more.  No one has the perfect child.  On our first visit to my son's pediatric neurologist he said, "You  have to pick your battles.".  So true.  My son is disciplined when he is doing something wrong, but this will not make him not have autism.  
As for growing out of autism, I know my son will always have autism.  I don't believe he will just grow out of it.  He may learn to communicate more as he gets older, this is my greatest hope.  But, because he will always have autism, does this mean he is doomed for life?  Absolutely not. This is what I would like  people to become aware of during autism awareness month.  Don't get me wrong, I'm not saying that raising a child with autism is easy.  It can be difficult, stressful, and requires more patience than you can imagine.  I'm sure there will be stages we go through as he grows, that will not be fun, to say the least.  There  are days when I worry, and days when I lose my mind. But, who doesn't have days like that?  I just won't lose hope that my son and family can lead a happy fulfilling life.  It might be different from the norm, but just as worthy.