The Things that Parents of Kids with Autism are Tired of Hearing…..

Recently, on a Facebook group page for parents of children with autism, a friend brought up the subject of things that people say to us (parents).  So of course, this started a thread of conversation of all the things that we hate hearing.

I realize that when you are in a conversation with someone about your child with autism or any special need issue, people don’t really know how to respond or what to say.  So they say something that they think will make you feel good about your situation.  I understand the need to say something…..and I understand that people are just trying to be nice.  But I wish everyone would also understand….I have heard it all.  A few thousand times!

These are my top, please don’t ever say that to me again, sayings…..

1)  You must be a very special person.  God gives special children to special people.

  Let me tell you, I am not special.  I am no different from any other parent. If you had a special needs child, you would rise to the occasion because you are their parent.  Not because you are special.  I understand that people try to say this as a compliment, but it just sounds trite to me.

2) God doesn’t give you more than you can handle.

Well, actually, I think He does-if we can handle everything on our own, why would we need Him?

3)  Well, I don’t know how you do it.  I just don’t think I would have the patience, strength, _________ whatever, fill in the blank.

This kind of goes with number 1.  Really, if you were faced with “whatever”, I believe that you would rise to the challenge.  Life is full of things that are challenging and hard.  But most of the time we don’t have the choice to “opt out”.  So in reality, if you had to be patient, persistent, strong, etc., I think you would!

4)  I thought I had it bad….talking to you has made my problems not seem so bad.

There are a variety of ways that this can be said.  But seriously, THIS is supposed to make me feel better?

5)  Oh, he has autism?  What is his special talent?

Thank you Rainman!  The character portrayed by Dustin Hoffman is often the only barometer some people have for autism.  But he was an autistic savant.  Only a very small percentage of children with autism are savants.  My child is not one.  Sure, he has some things that he is good at.  But he can’t do any super special tricks, like counting toothpicks or memorizing the phonebook, or playing a song on the piano by ear.  This is one of the biggest myths about autism!!!

So that is my short list.  I don’t write this to offend anyone or to sound sarcastic.  I just want people to really think about what they are saying to parents like me.  Don’t say I’m sorry.  (I’m not.)  Don’t say any of the above things.  You could say, “That must be very difficult.  How can I pray for your family?”  Or “Tell me more about your son.  I don’t know very much about autism.”  But don’t try to make me feel better!  I already feel pretty good about things.

 

I am Weak, But He is Strong…..

It’s funny how God weaves messages into our lives. Well, it shouldn’t be thought of as funny…..as believers we should really expect it. Yet I am always moved when I see Him in my daily struggles. This past weekend….Thursday, Friday and Saturday night, we tried a new medication for Tanner for sleeping. The intent is that something else might help him sleep all the way through the night so that it won’t be an issue for summer camp. He is going to a special needs camp for the first time without his family. We give him medicine every night at about 2 am but this may not be a possibility for him at camp. So we tried this other medication. First night was fine….he slept all night. But Friday night he got up at 3:45 am and Saturday night at 3:30 am. And didn’t go back to sleep.

It was exhausting…..but surprisingly, I fought through it with a positive attitude. Maybe I knew it wouldn’t work…. And then I went to church on Sunday. Our pastor preached about how we as Christians often “put up a front”. Pretending we are doing great, when our whole world could be falling apart. Or things just aren’t very rosy! We pretend to be strong because we don’t want to appear weak.

But according to 2 Corinthians 12:9…….God’s grace is sufficient for us. His power is made perfect in our weakness. Ahhhhh, I thought as our pastor spoke those words…..there it is again.

A couple of years ago, I was beginning to feel very apprehensive about Tanner getting bigger and stronger. He was being a tad bit aggressive and I was feeling discouraged about that. Would he get really aggressive? What if he hurt me? How can I handle him as he gets bigger than me? I was full of doubt and worry and defeat. At the time I was participating in the Beth Moore bible study “Esther”. While I was sitting at class on this one day, we watched a video and Beth said, “it is through our weakness that we feel His strength.” I took note of it, yet sort of put it at the back of my mind.

After Bible study that day, I went to “Lunch with Pete”. Something they do at our church from time to time where several people can have lunch with our pastor, write down some questions on a card, and have a little more intimate time with our pastor than at church on Sunday. I don’t remember what the question was, but I heard Pete say, “it is through our weaknesses that we experience God’s strength.”. This time I took notice….. Then I heard God say to me…..”That is FOR YOU! Do you hear me now?” It’s pretty cool when you realize that God is talking to you! And I suddenly felt a peace and all the apprehension melt away.

With a child with autism, we face a lot of uncertainty, a lot of anxiety, a lot of fear, a lot of frustration. But God reminded me yet again on Sunday…..through the words of my pastor, that I am weak but HE is strong. He is with me. I am not alone. I am so grateful for that reassurance. That is how I get through every single day……knowing he is with me.

If you missed my radio interview….I talked about this in another story-something that happened on an airplane. Here is the link…..look on the archive for the date March 24, 2012….. http://www.comfortandcompassion.com/u2havehope/listen-online/.

For those of us with special needs kids…..we need to know that we are not alone. We feel so weak so many times…..and mostly we are stuggling to hold our heads above the water…..but our Heavenly Father is holding us up….filling in when we feel we just can’t do one more thing. And the knowledge of that makes me feel eternally grateful!

Autism Awareness Month

So here we are again on April 1st.  Most people think of April Fools Day.  Those of us with kids with autism know that it is the first day of Autism Awareness Month.  I can remember back to the first couple of years after Tanner was diagnosed.  I wore my “puzzle” ribbon and told everyone it was the month for Autism and for everyone to “be aware”.  One year I did a prayer calender-30 different things to pray for regarding autism and the people it affects!  Now to me, it is just another day.  Another day in our life…..a life that is aware of autism every single day of the year…..not for just 30 days when people raise money or light a blue light or wear a puzzle ribbon.  We are aware of autism every Saturday morning when my 16 year old knows that he doesn’t have to go to school and is up before the sun.  We are aware when he picks his finger, it won’t stop bleeding and he won’t wear a bandaid and we try to keep a glove on his hand so that his clothes and our house don’t look like a crime scene.  We are aware when he is desparately trying to tell me something and I don’t understand his words. 

A new statistic came out last week…..1 in 88 kids have autism now.  WOW!  When we started this journey 12 years ago, that stat was around 1 in 150.   What does that number have to get to?  More children were diagnosed in the last year with autism than with AIDS, diabetes & cancer combined.  I could go on and on…..but I’ll just give you a link to Autism Speaks….  http://www.autismspeaks.org/what-autism/facts-about-autism.

What you should really be aware of is that all of those children that have been and will be diagnosed with autism, will one day become adults.  Many children will improve over the years but so many will still be dependent on others for their care.  What happens then?  

Our family is fast approaching this season of Tanner’s life.  What will we do?  Where will Tanner live?  What will he do each day when he doesn’t have school to go to?  Multiply these questions for the millions of families living with autism.  How will our government, our churches and our communities step up?  

This is what I am aware of today…..not a cute puzzle piece or a new commercial on TV.  

It’s something for you to think about as well!