Month: September 2017

Posted on

Autism and Respect for Others

Autism Respect

Today was a good day.  Our whole family gathered to celebrate my parents’ 50th anniversary.  As we sat and laughed together, I couldn’t help but watch Casey and Rob as they enjoyed the day, too.  I was even more proud to hear them say “yes, please,” “no, thank you,” and “excuse me” as needed.

It may seem like respect and manners are the last thing our kids need when they have so many other issues.  I completely disagree.  I can’t count the number of people who have complimented me over the years on how polite all of the kids are.  It wasn’t easy, but it wasn’t any harder than teaching them other sentences.

All kids model what they see.  If you use manners and show respect to others, your children will follow your lead.  When Casey was little and just learning to talk, we used PEC cards to make sentences for her to practice.  “I want a drink, please.”  “I want a cookie, please.”  It was no big deal to add please to her models.

When I started using sign language with her, I signed please and thank you and she followed my example.  She still signs please at times when she is talking.  Rob didn’t use the PECs cards until he was older.  He was more willing to verbally mimic what was said to him.  I always added please and thank you.

I insist they answer when someone says “hi” to them.  Is it easy?  Of course not, but they need to show respect for others.  Many times, I have to say “What do you say, Rob?” when someone says “Hi” to him.  I don’t let either of them ignore friendliness.  Saying “Good bye” and “Thank you” when they leave somewhere is not negotiable.  They are capable of saying it.  Again, I often have to remind them, but that’s ok.  That’s what moms do.

You have to remember that I started all of this when they were young and I still have to remind them.  Having autism is not an excuse for being rude.  Is it a huge deal when you are trying to handle so much else?  Of course not.  But – you can model the words for your child.  Show them the signs for please and thanks.  Or give them PECs cards to flash.

Your child wants to feel like they belong, even when their own little world is so important to them.  Show them respect – let them see the way you act and they will model it.  In their own time, of course.  Teaching manners isn’t an hour long project.  It is a lifetime of reminders and verbal cues.

Manners aren’t just polite words.  Manners and respect include sharing and taking turns.  Your child will probably find these incredibly hard.  Rob will share some things easily – others are his and we have to work on sharing.  Casey is less likely to share what is hers.  Constant reminders do little good some days, but she is never mean when asked to share.  She just says, “No, thank you” and turns away.

Taking turns and sharing are valuable parts of being a friend to others.  You don’t want your child’s inability to do either scare away potential friends.  The funny thing is, you also have to teach them not to always give in to others.  What a fine line to walk.  Share, but not always.  No wonder kids get confused.

I often have to remind Casey and Rob to say “excuse me” when needed.  At times, the words come out spontaneously and I cheer!   They are not perfect with their manners, but we keep at it.   Sometimes, their manners come out at funny times.  Last year, Casey was having a meltdown and I told her to go in her room until she could get control.  She screamed “No thank you mommy!” at me.  I had to laugh, which angered her, but she calmed down quickly when I couldn’t stop laughing at her.

It seems so many parents are letting their kids get away with no manners and no respect for others.  We all see it in stores – children who demand things and threaten to scream if they don’t get it.  No respect for the word “No.”  I refused to let any of my kids act like that.   Casey had a few meltdowns in stores when she was little.  Usually, I could see it coming and we left quickly.  Of course, her meltdowns were sensory issues and not because she wasn’t getting what she wanted.

For Mandy and Rob, a mean mom look was usually enough to remind them to behave.  Casey often needed to hear words as she rarely looked into my eyes.  I think that had I had any clue what autism really was when Casey was little, she wouldn’t have come as far as she has.  Autism wasn’t well known 27-28 years ago.  I remember being grateful she wasn’t “sick” when we got the diagnosis and thinking “How bad can it be?”  (yes – I have learned many times over just how bad it can be!)  I was young and naïve.

But being naïve also gave me a strength and a stubbornness I may not have had.  I had no clue they may never be potty trained until she was already trained.  I didn’t know she may never talk, until we had already found ways to communicate.  I never thought about manners being something they wouldn’t need until I had already begun to teach them.

Please – don’t assume your children can’t be taught or that they don’t need to learn manners and respect.  Everyone needs these.  Your children may take longer to learn or need to be shown in different ways, but they can learn.  They may need a communication device or another way to say “hi” but it can be done.

I know you are overwhelmed at times and teaching your kids to say please and thank you and way down on your list of things to do.  You don’t need to make this a priority.  Just model the words and your child will follow your lead – in their own time, in their own way!

Posted on

Autism Mom is Tired – Why Taking a Nap Won’t Help

Autism mom is Tired

Some days, I’m tired.  Like super, can’t think about moving off the chair, don’t care about anything tired.  It’s not just a “take a nap and feel better” tired.  It’s a tired of worrying, thinking, planning, handling things tired and no amount of sleep will help that.  And I know every one of you knows exactly what I mean about autism tiredness.

And I’m one of the lucky ones.  For many, many years, Rob couldn’t sleep through the night.  While he just played in his room (after sneaking a snack some nights) I heard him and often laid in my room listening for him to go back to sleep.  Most nights, he would open my bedroom door, then Casey’s – and he never shut them quietly.  I think he was checking on us.

Finally, he has either matured enough to sleep or we’ve found the perfect bedtime routine and meds to help him sleep.  Though there are nights when it’s late before he sleeps, most nights, he is asleep by 10:30 or so and sleeps till I have to wake him up the next morning.  Casey has an occasional night that it is hard for her to go to sleep, but those are finally rare, too.

So even though I get to sleep each night, I’m still tired.  I’m tired right now.  I spent three hours today taking an online continuing education course for the kids’ guardianship in addition to everything else that needs done on the weekend.  I’m ready to watch TV and relax.  And Rob is “Singing.”

By singing, I mean he is repeating the same sounds over and over in a loud voice and as been for the last hour.  There isn’t a room in the house that he can’t be heard in.  His iPad is on his lap – he has a pile of magazines and still he sings.  Every time I go in to ask him to use a quieter voice, he says “GET THE VAN!” in the same loud voice.

Yep, he is still saying that.  It’s the first thing he says to me every morning.  And every time he sees me.   When he comes home from the workshop or gets out of the shower.  Every time he is in the car with me, I hear it over and over.  Last week, we drove to a park less than 5 minutes from our house and he said it almost 50 times.  I’m tired of it.  I wish he could at least use a quieter voice.

My kids are the most important people in my life.  I feel so bad that I get tired of autism.  I’m tired of packing the same things in their lunches.  I’m tired of helping them shower every night.  I’m tired of wondering how people treat them when I’m not around.  I’m tired of wondering what the future will be like for them.  I’m tired of second guessing myself for the decisions I make.

I’m tired of his picky eating and her eating everything she can get her hands on.  I’m tired of having to adapt every plan we make.  I’m tired of financial worries for them.  I’m tired of people telling me to take a nap and feel better.  I know they mean well, but while sleep does help a little, I’m still tired.

I’m tired of hiding that I’m tired.  I am supposed to be strong and capable, not tired.   People tell me that all the time – how they could never do what I do.  I don’t believe that.  I think we all can do what we need to do.  It’s just exhausting.

I know everyone of you reading this has days like this.  It’s hard to be “on call” at all times – even when you are away from your child, you are still thinking and planning and wondering.  A break from a special needs child is wonderful, but it is rarely truly a “break.”  You are still worrying about them.

What I’m most tired of, though, is feeling guilty about being tired of autism.  Autism has brought a lot of good into my life.  I’ve learned so much – about disabilities, about friendships, about who I am.  Autism has given me many opportunities that I would have never had.  I’ve learned patience, tolerance, acceptance.  I’ve learned to defend myself and my kids.  But, I still feel guilty for being tired of it at times.

I worry that people will think I mean I’m tired of my kids or that I’m not proud of them.  That is never my tiredness.  I am so proud of all they have accomplished and can’t wait to see what else they do with their lives.  I’m never tired of being with them – I just get tired of autism’s “quirks” sometimes.

When you get that tired, please take a break.  Find someone you can trust to stay with your child – even if you are just going in the other room and take a long, hot bath.  Try to stop thinking about the future and all of the “what-if’s” that we can’t possibly know.  Believe me, I know how hard that is to do!

Think about all of the amazing things your child has learned to do – and remember that you worked just as hard as your child.  Every little accomplishment should be celebrated!  Shout it from the rooftop when your child tastes a new food or wears a new shirt.  You both deserve the applause.  Remember – those accomplishments are why you are tired!

Be tired of autism at times – that’s ok.  Try not to feel guilty about being tired of it.  (yes, Mom – I am still working on that part!)  Know that you are not alone and you are doing an amazing job raising your children.  Tell everyone when your child reaches a new goal.  Jump, clap, shout for joy!  Those will be the times that will help you the most when you are exhausted!

Posted on

Autism and Your Child’s Safety

Autism and your Child's Safety

I’m sure every one of you has safety precautions in place.  Your doors stay locked for the wandering kids.  Your windows are permanently closed to prevent falls.  Your cupboards are latched, toilets are closed, cleaners locked away.  Your home is as safe as autism will let it be.  But have you thought about your child’s safety in the event of a car accident?  As you travel?  What about a house fire or natural disaster?

Where I live, tornadoes are possible but rare.  I had always wondered if the weather turned terrible at night if I could get both kids to wake up enough to get to the basement with me – and would they stay there?  A few years ago, our summer was one threat of tornado after another and terrible thunderstorms.  The first time the tornado warning sounded, I jumped up and ran to Casey’s room.  She is a deep sleeper – one that rarely moves during the night and the one I was most worried about waking up.

She was sound asleep, but when I ran in and started shaking her, she woke right up and got out of bed.  Mandy was on her way from her room as I walked out of Casey’s and she took Casey and the dogs to the basement as I went to get Rob.  He woke easily, grabbed his blankets and went to the basement with me.   The kids crashed on a mattress as I watched the TV and cried with relief that I would be able to get everyone safe during a weather emergency.

Every time I had to wake them up that summer, they jumped right up.  You need to consider what you will do if your child won’t move fast enough and you can’t carry them.  Make more than one plan in case the first one doesn’t work like you think it will.  Consider purchasing camping lanterns for light as lit candles are too dangerous for our kids.  Make sure you have water and snacks in your safe area.  Think about packing a backpack with medicines and fidgets to help calm your child while you wait for the storm to pass.

In my case, my first plan was to try to wake Casey first, then go to Rob.  If she struggled to wake up, I was going to take him to the basement and turn a power rangers movie on – I knew he wouldn’t leave the movie to come looking for me.  If neither would wake up, I was going to toss water on them.  Yes, I know that sounds mean, but I knew it would wake both of them up enough for me to get them moving.

Being in a car accident is one of my biggest fears.  If I am unable to help them, I don’t think either will try to leave the car.  I desperately hope I am wrong, but I just don’t think they will.  I have stickers on my windshield stating that there are occupants with autism who may not respond as expected.  I have information in the glove box for each of them – contact info, name, address, their diagnosis and what they might possibly do.

My list includes the fact that Rob may run away and that neither understand danger and may wander into traffic.  It says that both have moderate autism and that communication is difficult.  Casey may be jumping and screaming, while Rob may be pacing and yelling.  I want every first responder to know what they may be doing and to not try to touch them.  The kids need to be given space to calm down and for people to use statements such as “Tell me your name” instead of saying “What is your name?”  My lists explain that questions are confusing and that they need time to process the words.

Rob is a big guy.  I don’t want anyone to think he is being aggressive when he is simply overwhelmed, scared and trying to calm down.  Casey’s screaming and jumping is scary to see and if someone tries to touch her, it will only get worse.  First responders need this information.  I’m sure their adrenaline levels are sky high when they respond to emergencies and they need to make split second decisions for their safety and that of my kids.  The more information available to them, the safer we will all be.

As for home safety, Casey and Rob both know they are to leave the house if they hear the smoke detectors.  They are never alone, but I have drilled this into their minds.  They are to leave and go sit in the garage (our garage is unattached) and wait for someone to come.  Will they do it?  I doubt it.  The smoke detectors have gone off and they have no response to them at all.  Again, I have made my plans for leaving the burning house.

In the middle of the night, I will get Rob first, as his room is right beside mine.  Once he is on his way to the garage, I’ll get Casey.  We can get out one of her windows without much of a drop, if needed.  Of course, as soon as I see the danger, I’ll be screaming both kids’ names and hoping they come to me and we can all leave together.  Maybe I overthink things, but I want a plan in place, just in case.

It’s just like learning CPR.  You pray you will never have to use it, but if you do, you want your movements to be instant and not have to stop and think about anything.  Plan ahead – think about all of the ways your children might react (like that’s even possible to do with our kids!) from hiding to running to having a meltdown.  You have to consider how you might move a person that is bigger than you and get them to safety.  Keep a treat they won’t refuse where you can get to it easily and bribe them if necessary (though I like to call this positive reinforcement instead of bribery!).

Contact your local emergency services and see if you can have your phone number highlighted with additional information.  This means that when 911 is dialed from your home, the fact that you have a person with special needs will automatically pop up on the operator’s screen.  Add as much information as possible, such as how your child may be react or how they communicate.  I did this a few years ago with our local 911 system.

A friend of mine at our local board of DD is working on a project for first responders and emergencies with people with special needs.  This could be a great suggestion for your local boards – or something you could work on.  First responders need training in helping our families and this doesn’t always happen, especially in rural areas.

My thoughts and prayers are with the families affected by Harvey, in the path of Irma and near the terrible wildfires out west.  These are terrible situations, but when you have a person with autism, it can be so much harder.  Please say a prayer for them, too.

Posted on

How to Explain Death to your Child with Autism

How to Explain Death to your Child with Autism

Telling your child someone they loved has passed away is never easy.  When that child has autism, it can be even more difficult.  I’ve had to tell the kids before about a death, but those were elderly people.  Today, they had to hear that their grandpa was gone.

They knew he had been sick and in the hospital.  Casey has been talking about Grandpa Bill and Heaven for a few days, but last night, she was saying he was going.  She always smiled when she said it.  She often smiles or giggles when she is nervous or isn’t sure how to react.  But then I realized she was smiling because she was happy for him.  She knew he was going to see Grandpa Jones (his dad) in Heaven.

I got choked up.  When their great-grandparents passed away, we talked about Heaven and being with Jesus.  During our lessons for church, we talked about Jesus and how good people go to Heaven when they die.  She firmly believes in Heaven and Jesus, even if she can’t go there.  It’s a real place to her – like the state she lives in.  She may not completely understand death, but she isn’t scared or unhappy about it.

Rob hasn’t said much, but he rarely does.  He knows about Heaven, but I think he sees it as a place like Oz.  It’s beautiful and some people go and others don’t.  He will ask for Grandpa Bill at times, I’m sure – probably when he visits his house.  He is a little anxious today, but I don’t know how much is from Grandpa and how much is the weather and the long weekend.

Casey is laying on the couch now reciting everyone she knows how has gone to Heaven – Bonnie, Grandpa Hopkins, Grandma Hopkins, Grandpa Jones, Bingo.  She is laughing and giggling.  She isn’t crying, but I am.  She asks “Mommy sick?”  I tell her I’m not sick, just sad.  Now, she is confused, because Heaven is a good place.

So I tell her again that yes, Heaven is good.  I tell her I am sad because I miss the people who are there.  She says “talk?”  Yes, Casey, I want to talk to them again.  Now she says “Talk!” – not a question, but a statement.  Because, when Casey and Rob want to talk to someone, they talk.  I can’t count the number of times I’ve heard one or the other talking to Grandpa Jones or Grandpa Hopkins.  It is so simple to them.

I can’t tell you exactly how to explain death to your child with autism.  The best advice I can give is to say to know your own feelings before you begin.  If you believe in Heaven, then share that with them.  If you have other beliefs, then share those.  And get ready for questions you may not want to answer when you are upset yourself.  The questions may not end for months.

I would caution you not to use phrases like “went to sleep” or “gone away.”  People with autism are so literal that hearing someone went to sleep and will never be seen again is just asking for sleep issues.  Would you go to sleep if you thought you would disappear?  I doubt it.  Avoiding sleep could become an obsession.  The same with saying “gone away” – your child may wonder if every time they can’t see you if you have left forever.

Tell your child the truth.  They may not understand the concept completely, but at least they won’t develop other issues because you took the easy way out.  Tell them what you believe and let them take the lead about questions.  I didn’t take Casey or Rob to any of the funerals and I won’t.  I want them to think of Grandpa in Heaven, not laying so still in a building they drive by all the time.

I am in no way saying my way is the right way.  You have to do what’s right for your child and your family.  Much of it depends on your child’s abilities.  Some people with autism understand death and can handle funerals.  Casey and Rob are not those people.  They won’t understand why Grandpa doesn’t talk to them.  They won’t understand why they never go back to that place to see him.

Explaining death is hard for anyone.  There are books for you to read to your child if that would be easier for you.  Before you do anything, please decide what you believe and follow that belief.  If you are confused, you will never be able to help your child through this difficult time.

Don’t be upset if your child has little or no reaction to losing someone they love.  That doesn’t mean they didn’t love that person – it simply means they don’t understand.   Or maybe they understand and believe in a happier place where we will all be together some time.  Don’t try to force your child to show emotion.

If attending the funeral will be too hard, find someone to stay with your child.  You need time to grieve without trying to take care of your child, too.  You will become upset quickly if your child doesn’t sit quietly in the service.  Save yourself some stress and leave them home.  Or find someone to stay in a quiet room at the funeral with them.

Let your child see you upset.  Let them know it’s ok to cry.  Or laugh or whatever emotion they feel.  Be ready for more behaviors or anxiety.  Make sure you tell their teacher or aides what has happened.

As for me, I’m going to try harder to follow Casey and Rob’s lead.  I’ll try harder to keep the simple faith that no matter how much I miss someone, they are in a happier place and I will see them again some day.