You Might Be An Autism Parent If...

I've seen lists like this before and I thought it would be fun to write one of my own.  This list pertains to my family, but I'm sure some of you can relate...

You might be an autism parent if…

1.  You are ecstatic when your child tries a new food, only to have them not eat it again 3 days later.

2.  You are the only parent at the playground not sitting down and visiting while your child plays. You have to watch him every second.

3.  You are very familiar with the wet noodle move, where your child goes limp and falls to the floor, and won't move a muscle.  This usually happens in public, and you literally have to scrape them off the floor while strangers look at you in awe.

4.  Going to the grocery store alone is more relaxing than your last family vacation.

5. You still leave your house with a bag full of diapers, snacks, and toys anytime you go anywhere, even though your child is no longer a baby.

6. You learn to function on very little sleep.

7. You have seen “Finding Nemo” 1 million times.

8. You see a box of latex gloves while walking through the store and you want to buy them because you know how much your child loves playing with them.

9. You say things like, "Please don't lick your violin."

10. You attempt normal family outings, and when they go well, you feel like you won the lottery.

11. You will literally do ANYTHING to get your child to look at you.

12. You say things like, "Please don't play in the ant pile."

13. Your child sings Christmas songs and “Happy Birthday” all year long, but you don't mind because you're so happy to hear their voice.

14. Your child is fascinated by hair dryers and vacuum cleaners, but hates leaf blowers.

15.  You wish you could take away your child's pain and frustration.

16. You love your child fiercely and will stand up and advocate for him always.

 17.  Sometimes, you just feel lonely. You wish more people understood.  You wish people would accept your child for who they are.   You wish they could see the beauty that you see.

There’s my list for now. Please feel free to add your own!

One of those moments

One of my son's awesome fashion creations.  I read this quote somewhere, "People with autism help to offset the excessive number of boring people on Earth." I  love this kid.

So, summer is officially over around here.  All the plans I had, all the things I wanted to get done over the summer did not happen.  But, that’s what usually happens when you try to plan things.  Right? I thought I would have my son fully potty trained, speaking in sentences, and socializing with other kids like a pro by the end of the summer.  Well, those things did NOT happen.  Everything is pretty much the same.  I’m not complaining or saying it’s a bad thing.  It is what it is.  But, I went into the summer with way too many expectations.  By the end of it, I relaxed and just let everything be.  I let my son stay in his pj’s all day and do whatever he wanted, and some days didn’t shove one flash card in his face.  Now, school is back in.  We haven’t had much change, because he is in the same class as last year with the same teacher.  It is familiar and he likes it.  I get to breathe easy for the time being. 

The other day, I had one of those moments where it just hits you.  As you might know, I am a teacher.  I was sitting in my classroom with one of my Kindergarten classes talking with the kids when it hit me.  My son is the same age as these kids.  My son should be at my school sitting in this class with me.  He should be able to have a conversation with me like they are, telling me funny stories about their summer.  He should be able to have friends like they do.   I learned to stop comparing to him to other kids a long time ago.  He has his own awesomeness that cannot be compared to anyone else.  But, in this one moment it just hit me and I almost couldn’t breathe.  The old suffocating feeling of worry and panic was creeping up on me.  Will he ever be able to fully communicate?  Will he ever have friends?  Live on his own? Take care of himself?  What other struggles will he endure as he grows older?  Will he be happy?  But, I stopped the train wreck of misery, I did breathe and I didn’t let it get to me like it used to.  I thought about his adorable smile, his blue eyes, his spirit, and his laugh.  I thought about how lucky I am to have him and I let it go.  Go me. :)

The Beach

We did have some fun.

My husband, my son and I just went on a little trip to the beach.  We’ve been going to the same beach and staying at the same place every summer for like the past 4 years.  Sometimes, it is really fun.  Other times, my son is not in a good mood, or something happens, and it’s not so fun.  Still we try and go every year.  We will probably go again next year, even though in the past few days, I swore that we would not. 

We left our home early on a Saturday morning.  About an hour into our drive, my son had to go to the bathroom. No. 2.  He is still not totally potty trained so thankfully he was wearing a pull up, because he didn’t make it to the Burger King restroom that we decided to stop at.  When he stepped out of the car, the poo began flowing down his legs like someone turned on a faucet.  My husband and I grabbed the wipes and began wiping as much as we could, but it was everywhere.  Shoes clothes, just all over.  All of the people eating breakfast in the Burger King were facing our direction watching.  I’m sure they were really happy to see this happening to us as they ate their sausage biscuits.  Finally, we decide, ok we’re going in.  This was our plan, We would sneak in the back door and my husband would take him in the men’s room because there are hardly any men here that we can see, they don’t go to the restroom as much as women, they don’t stare and judge as much as women, and they can just handle poo better in general. All of this wasn’t spoken aloud, it was just understood in the moment.  We can kind of read each other’s minds.  My husband went ahead with the boy as I gathered the mountain of wipes in the parking lot to throw in the trash.  I looked up and they were going in the front door.  The back door was locked; so my husband brave man that he is, was going through the front of the restaurant where you had to walk right by every customer that was there eating.  I ran in behind him hoping that there wasn’t a big pile of poo in the middle of the restaurant floor.  I went and to the ladies room to wash my hands.  No soap.  Unbelievable.  Other women came in and out I pretended not to be freaking out.  I walked out of the ladies room, I could hear my son screaming next door in the men’s room.  A few other women came to use the restroom as I stood outside.  Their eyes were as big as saucers as they whispered to each other hearing my son scream.   I couldn’t take it anymore, no one was looking so I ran into the men’s room.  I helped my husband finish up, threw my son’s disgusting shorts in the trash can and finally got to wash my hands with soap.  We left that place as fast as we could.  And we did eventually laugh about it. 

Our 5 hour drive took 7 ½ hours instead due to traffic and several bathroom stops.  My son was whiny and cranky for the whole drive.  By the time we got there, I kind of wanted to drown myself in the ocean.  But, instead, I had a glass of wine.  We swam in the pool, walked on the beach and went to bed. 

The next day, my son decides to start a new thing of screaming “NO, NO NO!’  at the top of his lungs .  He does this every few minutes over and over.  All. Day. Long. He is still doing it now as I type this.  Not as often, but enough to drive you a little crazy.  Mind you we were staying in a condo, kind of like an apartment complex, and he is outside on the patio/balcony yelling NO NO NO!  I’m surprised no one called the police. 

He loved playing in the ocean.  The water was really rough.  It was very windy and the current was really strong.  This made him love it more.  The waves would knock him down and force him under water and he would come up cracking up laughing. It was really cute and that is one of the many things I love about him. The dangerous/exhausting part was that he wanted to go deeper and deeper into the ocean and the current would carry us farther and farther down the beach.  He would not stop moving when I called his name or told him to stop.  Eventually, when we had gone far enough, I would have to drag him out of the water kicking and screaming, carrying him down the beach until he could calm down and walk next to me.  This is really fun while wearing a bikini, with people staring at you. J  I walked past children playing in the sand along the shore with their parents looking on from their lounge chairs, enjoying their drinks.  Jealous, much?  We would then go and swim in the pool, but after about 10 minutes, he would start screaming that his eyes burned and we’d have to get out.

One night, he was so tired he fell asleep at 6:00 in the evening.  We knew we were in for it then.  Sure enough, he woke up at 2 a.m. and never went back to sleep until the following night.  Guess what he was saying in the middle of the night?  NO, NO, NO!

After the countless meltdowns, constant whining and crying from both my son and me, my husband threw out the idea that maybe we should go home a day early.  I hated to give up and leave our vacation early but I gave in and we went home.

My boys on the beach.

Moral of the story is you win some and you lose some.  I know some people don’t want to hear the negative things, but this is reality.  And for everyone, sometimes it’s good and sometimes it’s bad. We’ve had other vacations where he was wonderful. This was not our best moment, but hopefully we’ll try another trip sometime.  I’m just not planning one anytime soon.

Graduation

My son just finished Pre K.  That's him in his little cap and gown. His teachers dressed them all up in it and took pictures. Adorable. They had a little ceremony where they sang a few songs, we watched a slide show, and they received their "diplomas." It was very cute and the teachers did a wonderful job.  I tried very hard not to notice that my son was receiving more assistance than most to participate, and that hearing the teacher tell other parents that their children were ready for kindergarten, and would do just fine, didn't bother me.  It's these kind of moments that kind of jerk you back into reality.  You try not to let it bother you, but it hurts.  Don't get me wrong, I am extremely proud of him.  He has come such a long way – to even stand there with the rest of the class and attempt to participate is wonderful!  I am just saying there are moments like these when it hits me.  Moments when I think about all the hard work, blood, sweat and tears that we've put in, and feel like it hasn't been enough.  It hits me and I think, "Hey lady, remember, Beckett has autism, he is going to struggle to do normal everyday things that other kids just pick up on."  Oh yeah.  It still hurts.  It still hurts when I see him around a group of kids and he doesn't know how, or necessarily even want to try and play with them.  Then, I start blaming myself.  I think, "I need to try to get him around more kids, or we need to have kids come over and play (which we never do), or I haven't done enough to help him with this." I think about kindergarten and it kind of worries me.  Will the other kids start teasing him because he doesn't play with them, is still not potty trained, or because he makes noises and repeats things over and over, and can't tell them about his favorite show or toy?   In a perfect world, they would see past these things and see the sweet, funny, silly boy that I do.  But, this is not a perfect world, and unfortunately I know these things can just get worse as he gets older.  Blah.  I have let my thoughts go to the dark side again.  Don't worry, I will go mix up a delicious fruity summer drink and stop being such a "Debbie Downer." I know  this blog post contradicts my last post that was filled with positivity.  But, these are the things I've been thinking about, and this is my blog,  so I can do whatever I want.  Ha!

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.

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.

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.