Don’t Do what I Say!

Autism and Language

How is that for a conflicting title?  But, I mean it!   How many times have I wished my kids wouldn’t have done what I said?  Because, as with many people with autism, Casey and Rob take what they hear very literally.  There is no gray – if they hear it, it’s black and white.

The first time I realized this, Casey was about 5.  I was trying to fix a bottle for Rob and Mandy wanted help with her baby doll.  Casey wanted a drink – now!   She only said drink a few times, but she was pacing around my legs as I was trying to help everyone.  So I used the phrase my mom used on my brother and I – “Hold your pants on, Casey!”

And it worked!  She finally stood still so I could get Rob’s bottle and help Mandy.  When I turned to her, I was shocked to see her standing with her hands in her belt loops – holding her pants on.  Casey had no idea why her goofy mom told her to do that, but since that’s what I said, that’s what she did.  This was lesson that I’ve had a hard time learning as it seems I am constantly trying to remember to say exactly what I mean.

When Rob was 9, a new roof was being put on our house.  My only job was to watch him.  He loved tools and he loved climbing.  You guessed it – I turned my back for 2 seconds and he was gone.  I ran to the back of the house and he was gone.  I looked up to see him sitting on the edge of the roof, gigging.  Before I could think, I yelled, “Rob, get DOWN!”  Now, of course, I meant, use the ladder right beside him, but no, he got down.  He jumped from the roof, landed in the pile of old shingles and rusty nails, did a perfect somersault and took off.

I try, I really do, to say just what I mean, but it’s hard!  How many times a day do you say a phrase that everyone around you understands, but your child looks at you like you are crazy?  How about “It’s raining cats and dogs” or that someone is the “apple of your eye?”  It’s hard and our language is full of phrases like this.

Casey used to have a bad habit of dropping all of her clean clothes on a chair in her room.  I went in and told her to put her clothes away.  An hour or so later, the clothes were still on the chair, so again, I told her to put them away.  A while later, I went back in to see she hadn’t touched a thing.  So I said, “Casey, get those clothes off of that chair, right now!” How many of you know what happened?  Yes – you are right.  When I went to check on her, the clothes were off the chair and on the floor!   I don’t want to know how many times I have said this to her – and how many times the result is the same.  You would think I would learn.

So learn from my mistakes.  Always stop and think before you speak.  Make sure you say exactly what you mean.  Remember, they hear in black and white – no gray areas.  If you say it, they will believe you mean it.  Don’t generalize because that is something that is really hard for most people with autism to understand.  Say what you want/need in as few words as possible and be clear.

And when you do tell your child something and they do exactly what you say, laugh with them.  It’s not their fault that you are don’t say what you mean – or that you say it in an unclear way.  It’s just part of the autism that we all have to be more patient with.

What phrases have you used with your loved ones?

Have a Happy and Blessed Easter!

A Proud Autism Mom

A Proud autism mom

Every parent loves to brag about their children.  You want everyone to know about the awards your child has won or how well they are doing in school.  You want to share the details of their latest accomplishment with anyone who will listen.  I’m a proud autism mom.

When you have a child with a disability, you are no less proud of your child.  Pride comes even easier when you know how hard your child has struggled with even the simplest things.  Unfortunately, not everyone understands why you are so excited because your child ate a new food.  They don’t get why it’s amazing that your little one slept through the night or actually wore a new shirt!

I get it – and so will thousands of other parents like me.  I laugh about some of the phone calls I made to my friends or parents because I was so excited that Rob wore a shirt that wasn’t striped (when he was in elementary school, every t-shirt had to be striped with no pockets.)  I remember texting Mandy when she lived in Texas just to tell her that Rob tasted a new food!

I remember being close to tears watching Casey sing in her first talent show.  She was so excited (I thought I was going to get sick from nerves!) and she did it!   Or how about the time they both told the waitress at the restaurant what they wanted – after reading the menu!  Only another special needs parent would understand my celebration – and celebrate I did!

Our milestones may not match what others do, but who cares?  They are milestones – and we made it!  All of the stress and tears were worth it  because our kids reached for the sky and touched the stars.  Who knows just how far anyone of them will go?  Think about how far your child has already come and dream away!  Never let anyone tell you not to dream.

Your dreams may be of a full night of sleep or of a child who is finally potty-trained.  You may dream of watching your favorite TV show without sound effects from the child beside you.  Maybe you dream about watching your child graduate from high school.  Go for it!

There were many days (and I’m sure that the kids’ teachers knew this) that I just wanted to give up on school.  I was tired of fighting for what they needed (and I mean for Mandy, too!) and just wanted to give up.  We made it, though – Casey and Rob both graduated with diplomas, not just certificates of completion.

Yesterday, I was lucky enough to be able to watch Casey and Rob compete in a track and field day for adults with special needs.  For the first time, Rob RAN his entire race!  I couldn’t hold back the squeals – I was so excited for him.  He was having fun and I loved seeing that.  My heart was bursting as I watched each of them win 4 ribbons of different colors.  Casey is more excited about the ribbons than Rob is, but I did catch him looking at his once with a smile on his face.

So, yes, I’m one proud mom.  What makes me proud may not be what other parents brag about, but I don’t care – and you shouldn’t, either!  Brag about every little accomplishment your child makes!  You both deserve it!  Enjoy every minute – take tons of pictures and relax!  You got this!

 

A Birthday!

Autism Diagnosis

It’s hard for me to believe it, but in just a few days, my sweet Casey will be 29!  No, it doesn’t make me feel old at all, but it is a good time to think back to how far she has come.

When I took her for her first specialist visit, I was pretty sure we would be told she had autism, so it wasn’t much of a shock.  This was in the early 90’s and autism wasn’t very well known at the time.  My mom had read a book, shared it with me and we both knew autism was causing Casey’s problems.

The worse part of that first doctor visit was the book that the doctor recommended I read.  He said it was one of the best available (remember, this was a long time ago!) and I bought it immediately.  That was simply the scariest book I have ever read.

I read that she would probably never be potty-trained or be able to communicate in any meaningful way.  I learned that I may have more children on the spectrum and that those children would always require total care.

I wish I could find the author of that book now.  I would send him pictures of my kids as they run out to the shuttle for another day of work.  I would send him videos of Casey singing in talent shows and of Rob laughing with friends.  I would show him the amazing artwork they do and the way Rob builds with Legos.

I would show him how Casey can figure out what day of the week any date has fallen on.  People love to ask her what day they were born on – even many, many years ago.  I am sure it is a math equation – which makes me wonder how she can do that in her head, but struggles with simple math. (Actually, I know it’s  because she loves dates and hates math! )

Only those who knew Casey as a little girl realize just how far she has come.  Snow days are no longer reasons to scream the day away.  Sensory issues don’t cause as much pain, as we have learned how to help her – and she has matured enough to be able to ask for help.

So in a few days, we’ll celebrate the birth of this amazing young woman with Cookie Monster cupcakes, ice cream and presents and as I watch her blow out the candles, I’ll be thinking of the little girl who tried for years, but simply couldn’t get close enough to the candles to blow them out.  I’ll remember the tears we all shed on her 9th birthday when she was finally able to do it!

Keep us in mind on your tough days.  Your little ones will have terrible days, but with your love and support, you’ll be celebrating little joys, too!

Keep smiling and laughing!
Jen