Why am I an Autism Mom?

Why am I an Autism Mom

As you can imagine, I follow many pages on Facebook and Pinterest that deal with autism or being an autism mom.  So far, I haven’t found any others written by a parent with adult children with autism, but I’m sure I will.  Most days, these posts make me laugh – or cringe as I remember some of the things my kids did.  One I read today really got to me.

This mom was having a terrible day.  Her son attacks her when he is frustrated and her entire day had been trying to calm him down and avoid getting hurt.  You could tell by the post she was exhausted and was at the end of her rope.  What she was really ranting about, though, was what a “friend” said to her.

Honestly, I’m sure the friend meant well.  She said to the autism mom, “Well, God only gives special children to special people, so you are lucky.”  And autism mom was ticked off.  She didn’t want to hear stuff like that when she felt like her world was falling apart.  Been there, done that.

It was a Sunday morning.  Even though I was exhausted beyond belief, Casey wanted to go to church.  Rob did, too, but only so we could go to McDonalds afterwards.  At the time, the church had a ministry for people with special needs, so they had their own class to go to while I attended the service.

I took the kids to their classroom and waited for my parents.  As soon as I saw them, I started to cry – and spent the next hour in my friend’s office, crying to my parents.  You know the story – too tired, too stressed, tired of dealing with everything.  I just wanted some sleep.  Of course, had I let on to any of this before I had my meltdown, mom and dad would have taken the kids and I would have gotten sleep…. but… there’s that whole asking for help thing.

Finally, I got myself under control and we were leaving the church.  A woman came up to me, saw what a mess I was, gave me a hug and said, “God only gives special needs children to very special people.  You are chosen.”  Hmmm… yep…  and that woman about got a smack in the mouth.  Who the heck did she think she was?  I stood there, praying, “Please, God, don’t let me slap her.  Please let me get out of here.”  Luckily, Casey and Rob had left the building and I could leave quickly.

Now, I know she was just trying to help.  She didn’t know what to say and was only trying to make me feel better.  Now, I can appreciate the effort.  Then, I seriously wanted to smack her.  She had no clue what my life was like and she had no clue what God wanted to do.

Most of the time, hearing that special people quote doesn’t bother me.  I can smile and nod and go about  my business.  Sometimes, though, I really wonder why I was chosen to be the mom to these amazing kids.   I am told God knew what he was doing.  Sometimes, I ask God if He is sure He knows who I am.  And I laugh, because laughing is better than crying.  I know God knows what He is doing – it’s just our little joke.

Maybe God brought autism into my life because I was a shy kid who was incredibly stubborn and who had a bit of a temper.  Maybe He knew that fighting for my kids would bring me out of the shyness and let me find my voice.  Maybe He knew that my stubbornness and temper would come in handy.  When people said the kids wouldn’t do something, I made them keep trying.  Will they always accomplish every goal?  Of course not!  Who does?

But their stubborn mom won’t let them quit.  When I was told they would probably never be potty trained, I couldn’t imagine changing diapers forever and stubbornly kept at it.  I’m quite sure it wasn’t my stubbornness that got them to understand using the bathroom – it was their own ability, given a chance to mature.  As difficult as it was to potty train them, I wish this was something all kids learned.  So many people with autism are unable to do it.  Personally, I think this inability has more to do with sensory issues than not understanding.

I will never know why God chose to make me an autism mom.  I will never know if I’m doing the right things for Casey, Mandy or Rob.  I’ve done the best I could – and prayed a lot.  I’ve admitted when I was wrong, but I also stubbornly stood up to professionals whenever any of the three kids needed me to.  I refused to take no for an answer at times.  I didn’t back down.

I have been told that I’ve helped many families with decisions for their children.  I’m not sure about that.  I told them what I thought – and I told them how to fight, if they needed to know that.  The truth is, my autism mom friends have taught me just as much.  We learn from each other about fighting, about services, about grace, about school, about relationships.  Sometimes, all we need is someone who understands obsessive eating or sensory meltdowns to listen to our problems.  I know none of my friends will say the special children quote to me.  I know which friend will get mad along with me.  I know which will be a reasonable voice in my anger.  I know which will say she doesn’t know what to do but she’ll do it with me, whatever I decided.

I wish I knew why God blessed each of you to be an autism mom or dad or family member.  It can be a blessing, as much as a challenge.  I know about black days.  I know sometimes black days are black weeks or months.  I wish those days wouldn’t happen, but even people who aren’t dealing with autism have dark days. Don’t let yourself become completely focused on autism.  Focus on your child and remember, he/she is a child/person first.  Autism is just a part of them.

Be angry when you need to.  Cry.  Ask for help.  Talk to friends – talk to God.  He might not tell you why you are on this road, but He will walk with you.  And if you need a sympathetic ear, I’m always looking for new autism mom/dad friends.  Message me!

 

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!