Tag: parenting autism

Posted on

Autism and the Art of Letting Go

Autism and the Art of Letting Go

When you have a child with autism, fear is never far from your mind. Fear for their safety. Fear they will need something and not be able to communicate that need. Fear they will be teased. Fear they will be lonely. The list goes on and on. But, despite the fears, you have to let them go. You have to let them try new things, go new places, meet new people. Will it always be a good experience? Probably not… but you have to let go.

One of the pages I follow just had a post from a mom who is upset that her son’s teacher wants to transition him to another class. She is actually pretty mad about it. She thinks her son is not ready and is not telling everyone how much he is regressing, despite glowing reports from his therapists and aide. She asked for help in forcing the school to do what she wants.

The thing is, I completely understand her fear. It’s terrifying to let your child be near new people that you don’t know. It’s scary to change a routine that he/she depends on. And really, as autism parents, we learn to live in that routine and we don’t want to change it, either. It’s what we know. But, your child deserves the chance to try. By holding your child in the same place, it may be easier on you, but it also keeps your child from growing. It’s not fair to your child.

I’m sure this mom sees behaviors at home that the school doesn’t see. I’m also sure that her son shows more skills at school than he does at home. Every child does. I’m constantly hearing about things that Casey and Rob will do for others, but when I ask, they look at me like I’m speaking in German. Let’s face it – kids always act worse for parents because they know no matter what, we’ll love them forever. When I was teaching, so many parents would say they had no idea their child could do something because they refused to do it at home. It happens.

But, if your child’s teacher and therapists are seeing amazing progress, it’s time to let go a little. No good teacher will move a child before he/she is ready. Ask for a meeting with the teacher and therapists and listen to their plan. You may not like it, but you can ask questions and share your concerns. Go meet the new teacher. If it’s a new school, tour the entire school and take your child to visit.

The change in routine may not be easy and you need to understand there may be a few rough weeks or months, but ultimately, pushing your child to stretch and learn is what you need to do. You know how you feel when you try something new and really like it? Your child deserves the chance to find what they like, too. They need pushed to keep learning and growing.

Try not to let your child see your fears. Make the change sound like fun and, if you have to, pretend you are excited about it. Do what you need to do to alleviate your anxiety. If the teacher is a good one, he/she will completely understand your anxiety and will do everything they can to help you. Visit the class and see the children who will become your child’s friends. See how the teacher runs the class – you’ll be able to offer her/him ideas on how your child will fit in the best. You can share your child’s strengths and your fears.

With autism, change is rarely easy. Life is unpredictable and it won’t hurt your child to learn that. The good thing with letting go is that you can prepare your child (and yourself!) for changes and grow together. It’s scary. But letting your child try is the best thing you can do for him/her. Remember – always reach for the stars. You won’t get there if you keep your child in one spot forever.

Posted on

Autism and Bright Spots in Life

Autism and the Bright Spots in Life

This may sound odd coming from someone with two adult children with autism, but the last few weeks autism and its affects have been a big topic in our lives.  Sometimes, I think we are so used to our life and our schedule that we don’t really “think” about autism, but it’s been big news this week.  Actually, the big news has been that both kids have made amazing strides and are doing such cool things.  Autism isn’t winning this week at all!

Bright Spot #1 – Casey got to be Cinderella for their Halloween dance and wear her dress to the workshop the next day.  She had asked to be Cinderella for 2 months and couldn’t stop smiling as she got into her beautiful, glittery (ugh – i don’t do glitter at all!  🙂  ) dress.  She posed for several pictures before dancing at her “ball.”

Bright Spot #2 – Rob found a clown costume he wanted to wear. We had planned to be characters from Cinderella (Rob, Mandy and Cory were mice, I was the fairy godmother) but he wanted to wear this outfit so bad.  And it was a mask!  He has NEVER worn a mask before, but was so excited and giggled as he got dressed for the dance.  (I hate clowns – I mean, I seriously do NOT like clowns and this was a creepy clown mask!  But – he was happy!)  He only wore it for a while at the dance (he got too hot), but everyone commented on how cool he looked.

Bright Spot #3 – I had to take Rob to the ER Tuesday.  And no, that’s not the bright spot!  The bright spot was that even though he hates hospitals, strangers and new places, he was wonderful!  He sat quietly and waited, then let the doctor look at his ears, even though he wanted our family doctor.  He waited while the nurse got his meds ordered and then asked to go back to the workshop instead of going to Grandma’s house.

Bright Spot #4 – Casey passed out candy to the “widdle” kids who were brave enough to trick or treat in the rain.  She giggled and rocked back and forth as she watched them walk up to the porch.  She was so excited!  This was the first year we had tried doing this, as she as always asked about trick or treating and I wasn’t sure she would be ok with passing out candy and not going herself.  I’m sure some of our neighbors would be okay with her dressing up and trick or treating at their houses, but I have finally gotten her to understand she isn’t going, so I don’t want to do that.  She lasted about half an hour, then decided her iPad was more fun than more little kids.  🙂

Bright Spot #5 – Rob tried two new foods this week!  He didn’t like either of them, but he was willing to take a bite and try.  I think the pudding texture is just too hard for him, but he just didn’t like the crackers.

Bright Spot #6 – I picked them up early Thursday for Rob’s follow up appointment with our family doctor.  We had to wait over half an hour (a rare thing in our doctor office!) but they both sat so quietly and patiently in the waiting room.  He got giggly at one point and she was rocking in her chair, but in no way did they disturb anyone else waiting.  When we got to see the doctor, Rob answered his questions and showed him which ear was bothering him.  And then told him we were going to Hobby Lobby and the Dollar Tree.  And Casey added McDonalds!   (We had a really nice evening!  No anxiety song, despite the crazy, rainy weather and the change in his routine!)

Bright Spot #7 – They both volunteer at different places around town with staff from their workshop.  Friday, Casey went to a day care while they children were sleeping to clean toys.   Her staff was so excited, they called and told me all about how she smiled and carefully wiped every toy and the bin the toys were in before putting everything back quietly.  The pictures they shared are so precious to me – Casey has a huge smile on her face!  (And she didn’t even try to take any Sesame Street toys home with her!  🙂  )

Honestly, I needed a week of bright spots.  Life has been crazy busy and I’ve felt like I was just dealing with stuff and not really enjoying all the little moments that we all need to see every day.  I’m usually the kind of person to always look for the bright spots in every day.  I thank God for the happy little moments that we can all find each day if we look hard enough, but lately, even though I’m thankful for those little moments, I haven’t fully enjoyed them.

Today, as I write this, I’ve loved remembering each moment.  I look at the kids and think how proud I am of them – how hard life is for them at times, but they still laugh and smile about little things.  Like a new coloring book and a pack of clay from the Dollar Tree or McDonalds for supper.  A costume they love – seeing Mandy and Cory – going to Wal-mart with Mandy and having supper at their house.  Tracie is coming tonight and Casey can’t stop giggling about that.

And I know that they (and autism) have taught me so much more than I ever taught them.

Posted on

Autism and Please Just Ask your Questions

Autism and Please Just Ask your Questions

Tracie and I took the kids to Richland Carousel Park yesterday.  It’s about an hour and half from our house and none of us had ever been there.  The day was chilly and rainy and something indoor seemed like a good plan.  Casey and Rob both stim on carnival rides, so we were curious about how they would react with one that wasn’t quite as wild as what they usually liked.  Autism can give things such a different perspective.

Despite a few twists and turns (we didn’t know they were having a Halloween parade yesterday and a bunch of streets were blocked off!) we got to the park.  Casey was thrilled with the gift shop – coloring books to look at!  But Rob took one look at the carousel and he was ready to ride.

Tickets are very reasonable and I wanted them to really experience the ride.  Tracie and I each rode twice and the kids rode a few more times.  Their smiles were amazing and I knew we had found something they both enjoyed.  It was a little loud, so by the time they were on their fourth ride, I knew it was time to go.

We went into the gift shop to look around.  Rob had little interest in looking and was getting hungry so he was rocking and humming a little.  Casey looked quickly, but she was ready to go, too.  As we were walking to the door, a lady asked if she could talk to me a minute.

The carousel is having an event for special needs families and she wanted to invite us to it.  I told her that was awesome for them to do that and thanked her for the information.  Her next questions made me laugh, until I realized she was serious.

“Did I offend you?”

Offend me?  I’m sure the look on my face told her what I was thinking before I laughed and said no way.  Apparently, a woman had gotten really upset and told her she was offended when she invited that family to the event, so the clerk was a little worried about offending others by asking.

And that brings me to my point of this blog.  Seriously, folks, if you have half a brain and pay attention, it’s obvious Casey and Rob are special needs.  Maybe you don’t recognize autism, but you can tell they aren’t typical adults.  Please – instead of staring – ask your questions.  I won’t get offended,  I’d rather people were just honest instead of staring and making comments.  (By the way, if they are unkind comments and I hear them, you might meet Mama Bear!  😉  )

Please – don’t tell your kids not to stare or pull them away.  Let them talk to us.  The more you make it seem like it’s a bad thing to have autism, the more they will avoid some pretty awesome people.  Let them ask questions.  Let them smile and say hi.  Let them ask Casey about her Elmo shirt or Rob what song he is singing.

People with autism have a hard enough time fitting in at times.  If you avoid people with special needs, your children will learn to avoid them, too.  You may be uncomfortable, but that’s okay.  I’ve been uncomfortable many times and I’ve survived and made some wonderful friends in the process.  Ask me why he is rocking (to calm himself).  Ask me why she is holding my elbow and he’s holding my hand (for comfort in crowds.  Ask me why he is going into the women’s restroom with me (he doesn’t go  in men’s room unless it’s a one stall bathroom and I can wait outside for him!).

Ask me why he leans his forehead to mine (comfort and to show love).  Or why she giggles at crying children or angry people (she nervous).  Ask me why he is wearing sleeveless shirts in January (sensory issues).  Ask me why she is wearing two shirts when it’s 80 degrees outside (cause the calendar tells her to!).  Ask me why he is talking too loud (he doesn’t know it!).  Ask me why he is singing Long Black Train (anxiety).

Ask why she is 30 and carrying an Elmo around (cause she loves him!).  Or why he doesn’t answer your questions himself (he doesn’t talk to strangers).  Just ask.  We won’t bite you for asking, I promise.  We would much rather you talk TO us than ABOUT us.  Autism isn’t contagious – but kindness is.  Casey and Rob remember who is kind to them – who respects them.  And they will never forget.

Maybe there are some parents who aren’t ready for your questions.  Maybe they are new to the journey of autism or are having a really bad day.  Maybe they haven’t fully accepted their life.  Who knows?  But just because one person reacts negatively to your questions, please don’t stop asking.  We need acceptance and discussions – not your stares.  Our families are just like yours.  We want to visit places and go out to eat.  We want to go to the movies and we want to play miniature golf.  Please help us do that.

Your kindness and smiles will encourage us to try again if an outing doesn’t go as well as we hoped.  Even if we can’t smile back (if a child is in the middle of a meltdown, smile and ask the parent if you can help – and don’t be offended if they don’t want your help.  We deal with this every day – and in the middle of a meltdown, we are only thinking of getting out of wherever we are!), when things settle down, we will remember the sweet person who smiled at us.

So – ask away.  I’m always open to questions.  You can message me on our Facebook page or contact me on here.  I don’t mind discussing personal issues with you, but I won’t do it in a public way – only through email or private messages.   🙂

Posted on

Autism and the Really Bad, Terrible Day

For the most part, I do laugh about most of our “adventures in autism” but there is one day that will never be funny to me. You might think it was the day Casey was diagnosed – or Rob. No, those were tough days to hear about autism but our really bad, terrible autism day happened in February when Casey was 6, Mandy was 3 and Rob was about 18 months.

Casey was in Kindergarten. Mandy was going to the preschool that Casey had attended. Two days a week, as soon as Casey got off the school bus, we loaded into the van to go get Mandy. This was our routine and it was fine with Casey as she loved visiting her old school.

On that day in February, a snowstorm was predicted for the next day, so I decided to stop and grab some milk on the way home from picking up Mandy. Casey was happy in the van, until we turned into the parking lot. She didn’t start screaming then – she just made unhappy noises and I assured her we were not going to be in the store long. I got everyone out of their car seats, kept Rob in my arms and grabbed Casey’s hand while Mandy took her other one.

The closer we got to the store, the more Casey got worked up. She was chanting “Barney! Barney!” but still in control. (Her routine was to watch Barney the Dinosaur when she got home from school.) When we walked into the store, she dropped and the screams started. I had to put Rob down to try and reason (what was I thinking???) with her. Rob was thrilled and toddled off. I had to send Mandy (remember – she was 3!) after him because I couldn’t leave Casey who was blocking the entire doorway and showing no signs of ever getting up.

Her screams echoed through the store. I’m sure people were staring, but I didn’t have the time to look. I was sweating and so mad. I knew she was upset because of the change in her routine. I knew she probably couldn’t help it. I simply didn’t care. I just wanted to yell back at her to get up and get in the cart and stop screaming. I was shaking. I was furious. And I knew that I was the world’s most terrible mom for being mad at my child with autism.

Rob and Mandy were having a great time running around. Mandy was dragging my purse because I couldn’t hold onto it and try to get Casey up. She was throwing herself around and kicking and I couldn’t get a grip on her to pick her up. And I swore to kill that stupid purple dinosaur. (Okay – yeah, I know that wasn’t so reasonable, but you have to understand the state I was in.) I finally got a grip on her belt loops and picked up her as she screamed and kicked. Not one person stopped to ask if I needed any help.

Mandy saw I had Casey in my arms so she grabbed her little brother and ran to the door with me. (They were still having fun running!) I still don’t know how I got all of us across that parking lot. Casey was still screaming and kicking and I don’t know how many times I almost dropped her. God was watching over us – we made it safely to the van. As soon as she realized we were going home, Casey stopped screaming, looked at me, and said “Barney.” And I, being the calm rational gal I am, said “Nope, no way! You are never watching that damn dinosaur again!” (Yeah, not my finest moment. I still feel terrible.)

When we got home, Casey ran right to the TV for Barney and I turned it off. (again, not my finest moment – what can I say? I wasn’t thinking straight) Casey, of course, hit the floor screaming and I started crying. I called my mom and cried and yelled into the phone. I swore she would never, ever watch that damn show again. I cried that I couldn’t do this anymore. I was done. Finally, my venting was over and I just cried. I was exhausted. My mom kept telling me this was just a bad day and that we would be okay. I didn’t believe her and told her as much.

Casey finally wore herself out and fell asleep on the living room floor. I hung up the phone and laid on the kitchen floor. I was too tired to get up. I was too tired to care about moving. I heard Mandy and Rob playing and closed my eyes. I ..kept praying the same thing over and over “Please, God, give me strength. I can’t do this.”

Of course, after some sleep, I knew keeping Casey from Barney wasn’t fair. She watched him later that evening (and she still watches that silly show!).

That day still makes me want to cry. I can still remember how I felt sitting on the kitchen floor. I know how tired I was. And I know we made it through.

I don’t share this story for anything other than to show that your terrible days will pass, too. I know how exhausted you are. I know you are just done. I know you sit on your kitchen floor and cry in the phone. But I also know you are stronger than you think.

When you have days like that, go easy on yourself. Yell, cry, pray – whatever you need to do to get through that moment and on to the next. Take a deep breath – slowly in through your nose and out your mouth. Let go of the guilt you may feel over not being the mom/dad that you think your child needs. Your child needs you. Simple as that.

Look at us. We had dark days. We had days that lasted weeks (and still do, at times). And Casey and Rob are both happy. They are doing so well. Her doctor even suggested decreasing one of her medicines and see how she does. They enjoy their lives and being with people they love.

You can do this. I promise.

Posted on

Autism, Discipline and Manners – Is it Possible?

Autism, Discipline and Manners

For the 5th time in just a few weeks, a parent told me that they never “discipline” their child with autism – that their life is hard enough without rules they need to follow.  HUH??   What exactly does that mean?

You read it right.  There are parents (both of special needs and typical children!) that no longer believe in teaching their children manners or rules.  They want to be the child’s “friend” and too many rules will make that impossible.  They believe no one else is polite, so why worry about their child’s manners?   And I’m sorry – I have the wrong attitude – but I wanted to smack them!  You don’t have a child to get a new best friend (but, if you are lucky, you do become that – through hard work, patience, laughter and love!)

I suppose, in a way, I was lucky that Casey had turned 4 before she was officially diagnosed.  I had certain expectations for her and taught those to her before I was told it would never be something she could do.  (Remember – this was 26 years ago – autism information has come a long way since then!)  I was told she would never be potty- trained, never talk, never be able to communicate her needs/wants, need constant supervision.  (I have since thrown away that first book I read – it was terrifying!)

Some of what I was told may have come true, but not much of it.  And through all of the books I read and conferences I went to, I continued to have expectations for her – the same ones I had for Mandy and Rob.  Sure, it was harder to teach her and Rob some things, but I never gave up.  I had to be creative at times to teach them to say please, thank you and excuse me.  I still have to constantly remind them to let others walk through a door before them and to share.

Sometimes, I have to remind them to say please and thank you.  But, that’s what a parent does – you constantly remind your child to act in a certain way.  You don’t give up because it is difficult.  You find new ways to teach them.  Because rude people are not accepted in society.  It may seem to be the norm, now, but it is not acceptable to me.  Autism does not mean my kids have a free pass to be rude little brats.   Nope, no way, not in my house.

Are they always perfect?  God, no!  Am I?  Nope.  Do I let things slide at times that I shouldn’t?  Yep – especially when we are having a hard day or we are tired.  Do I regret it?  Sure – but I’ve never claimed to be a perfect mom.  I do my best and let stuff slide – probably more often than I should, but some days, the little things just aren’t worth the added stress.

Yesterday is a prime example.  I wasn’t feeling well – Casey was in a mood – Rob repeated his anxiety song for almost 9 (yes – 9!) hours straight with no breaks.  By the evening, I didn’t care about how well they scrubbed themselves in the shower or how well their teeth got brushed.  We just needed it done with as little added anxiety as possible.

But, even at that, having autism doesn’t give them a pass on behaving themselves.  Autism causes certain behaviors and I would never “punish” them for those, but other things are not autism.  And I expect them to behave.  When they don’t, I correct them and explain in as few words as possible what they need to do.  Sometimes, saying “That’s bad.” is all I say.  If you say too many words, your child won’t be able to process what you are saying and you will be wasting your breath – and be right back where you started from.

Everyone has rules.  Your child may have autism, but they need rules, too.  You don’t leave the house.  You don’t climb to the roof.  You don’t jump off the roof.  You don’t leave with strangers.  You don’t hit others.  You have to wear clothes when you leave the house.  No spitting.  No running.  Hold an adult’s hand when you cross the street.  You will wear seat belts.  You don’t sleep at work.

Rules keep your child safe.  Will your child understand that?  Probably not.  Will it be easy?  Nope – you may never teach them some rules so you can trust them to do it.  (Look both ways before crossing a street is a tough one for us.  They both glance each way AS they are crossing the street.  It’s a constant battle, but one that I can’t give up on.  It’s a matter of safety!)

Being impulsive is a huge part of autism with some people, so not only will you be fighting the communication aspect, but also their own impulses.  You will get tired, but you have to do this!  You have to teach your child – you have to discipline them.  Imagine how your typical child will feel if they are punished for something, but the child with autism isn’t.  While I know life isn’t fair, that definitely isn’t!  It’s hard enough to have a sibling with autism without feeling as though they are more important or special than you.

Obviously, you will have to figure out what is autism behaviors and what is just being a brat.  Meltdowns from sensory issues cannot be helped, until you know what’s causing the problem and fix the issue – are their clothes uncomfortable?  Are they hot?  Cold?  Hungry?  Anxious?  Are the lights too bright or blinking?  Is it too noisy?  Is someone’s perfume too strong?  Always remember that meltdowns are NOT tantrums.

A child has a tantrum when they are told “no” or something is taken away they want.  Or when they are tired or hungry.  They kick and scream, but know exactly what they are doing.  A child with autism will kick and scream, but have no awareness of who is around them.  Casey never knew I was there until she started calming down.

You aren’t doing your child any favors by letting them do whatever they want at home.  You are making their teacher’s life miserable because, at school, they have to follow rules!   That teacher has enough to handle without the added bonus of a little brat with parents who refuse to believe their angel could be bad.

Autism or not, discipline and manners are important!  I know you are tired and stressed and don’t want to deal with anything else.  I’ve been there!  But, the sooner you start teaching your child, the easier it will be to continue.  Take a breather when you need to – don’t strive to be perfect.  A perfect parent simply does not exist.

 

Posted on

Autism and the Really Bad Night

Autism and the Really Bad Night

I’m tired.  There’s no other way to say it.  I’m not sleepy tired –  just tired of stuff.  Rob had a terrible night Friday and we didn’t sleep much and I think that’s catching up to me.  (I’m always okay the day after no sleep, but man, that second day is a killer!)  Thank you, autism, anxiety and an almost full moon.

I’m still not sure what was going on with him.  There are many possibilities and he can’t tell me what was bothering him.  He didn’t say he was sick or needed Dr. Myers, so I don’t think it was his ear.  He was just off when he got home from the workshop and as the night went on, he got louder.

At 1:00 in the morning, he let out a yell to wake the dead.  I ran to the bathroom to find him leaning over the sink, but as soon as he saw me, he grabbed me in a bear hug and couldn’t let go.  We stood there for several minutes before he would let go and lean his head on my shoulder.  I finally got him back to bed and sat with him for a few minutes before he said “Goodbye, Mommy Jen.”  (He always says that when he is ready for me to leave him alone.)

I’m not sure what time he went to sleep, but I didn’t hear him again.  I kept waking up to check on him and when I was asleep, it wasn’t a restful one.  Things just kept running through my mind…

Was he upset about me telling him to leave the emergency windows alone on the shuttle?  He had been playing with it and the shuttle driver asked him to stop and slide away from it, but he didn’t listen.  I know how much he likes Warren, so for him to ignore him is odd.  Maybe he was worried that Warren was mad at him?  (Rob gets extremely anxious when he thinks someone is upset with him)  When I talked to him, I just told him he needed to listen to the driver and leave the window latches alone, but who knows?  Maybe he was dwelling on it.

Maybe the not quite full moon was already having an affect on him.  I know some months are worse than others and I never know which kind of month we’ll have.

Or maybe his ear was still bothering him and he just didn’t want any more ear drops in it.  But he hasn’t pulled at it for several days, so I don’t think that’s it.

Maybe his room was too hot…. but he had his AC on.

He was a little upset before he went to the workshop that morning about our still unresolved issue.  (It has nothing to do with the workshop, but a family issue.)  I keep explaining to the kids that the problem isn’t them at all and Casey believes this (she rarely thinks anything negative about herself.  🙂  ) but Rob takes it so personally.  Maybe he was fixated on that and wondering why things changed.

Was he hungry?  Too tired?  Who knows?  And so we both cried in the bathroom in the middle of the night.  I hate the helpless feeling – when your child hurts, you want to fix it and I didn’t even know where to begin.  I thought maybe if he got comfy in bed, a few words would come, but they didn’t.

I let him sleep as long as he wanted Saturday morning.  He was still off when he got up, but didn’t seem to be as upset.  He didn’t enjoy his trip to the Dollar Tree (a favorite place to go) and yelled his anxiety song the entire time we were in there.  Usually, I don’t care what other people think, but being tired, I just wanted him to settle down.  So I tried to calm him and it had the opposite effect.  He knew he was stressing me out and got even more anxious.

Luckily, we were going to a car show to see Cory’s car and he calmed a little there.  He enjoyed looking under the hoods of all of the cars and sitting beside Cory’s car.  He was still loud, though.  And it was still getting to me.  I know that’s the absolutely worst thing I can do, but I couldn’t help it.  I was just done.

Tracie suggested we take the kids for a walk after the car show and they both enjoyed that.  He seemed happier after that (seeing Tracie, Cory, Mandy, Grandma and Grandpa helped, I’m sure) and took a short nap before he had supper.  But then, I had to keep waking him up (I was afraid he wouldn’t sleep again, if he slept too much during the evening).  He took his shower early and slept all night.

I was so relieved!  My head knows there is little I can do but offer comfort when the kids are having a hard time, but my heart wants to do more.  I feel like I should be able to figure out the problem, even if they can’t tell me.  I just ache when they hurt and I can’t help them.  And I resent autism.

I get angry when I know what problems are and still can’t help them.  I want to scream at people to make them see the pain they are causing, but I know it won’t do any good.  I just keep praying the situation will resolve in the kids’ best interest.

I know every one of you knows exactly how I feel.  Autism definitely brings out the helpless feeling more than any of us want.  It brings out anger and resentment.  None of these are especially good feelings – they are ones I sure want to avoid!

I’ve got my fingers crossed that the full moon comes and goes without a repeat of Friday night.  It’s been years since we’ve had a night like that (we’ve had sleepless  nights, but not one with this degree of autism anxiety) and I hope it’s years before I see another.

I hope the full moon effects aren’t too bad in your homes this month!  Good luck!

Posted on

How to Help your Child with Autism Sleep

How to Help your Child with Autism Sleep

Autism and sleeping as been a big topic of discussion on our Facebook page the last few days.  One mom asked for some advice and so many offered ideas for what helped their child sleep.  Be sure to check out that post – there are a lot of ideas that I had never heard of, but parents are having success with each of them.

When Casey was a toddler, she would “sneak” out of bed and down the hall to lay by the living room door.  Of course, I never noticed the little green ghost carrying three teddy bears as she ran by me.  🙂  When she did finally go to sleep, she stayed asleep all night.  Now, I think that she was lonely.  Mandy was just  a baby and was sleeping in my room in her crib (because I didn’t want her crying to wake Casey).  As soon as Mandy moved into Casey’s room, she stayed put…. but not necessarily asleep, as she loved to peek in Mandy’s crib and giggle at her.

After Casey got her autism diagnosis, she managed to switch her days and nights – meaning she wanted to sleep all day and be up all night.  She slept at school when she could and on the days when she didn’t have school, I spent my days fighting to keep her awake. (she would hide to sleep – or even lay in the middle of the backyard and curl up!) But even if I did keep her up all day, she still wanted to be up all night, too.  Those were some long nights, but finally, she adjusted herself.

Rob slept through the night as a toddler, but then decided that he wouldn’t sleep in his room at all.  I am guessing he had a bad dream and associated it with his room.  Every night, as soon as he could, he grabbed a pile of blankets and either came to my room to sleep on the floor or he went into the girls’ room and slept there.  For years, he slept on the floor.  I know at times, it drove Mandy crazy, as she got tired of him being there, but Casey never said much about it.

And then it happened.  Rob couldn’t go to sleep.  When he did finally crash, he didn’t stay asleep.  He was up and down all night – singing, playing, opening and shutting doors.  I was grateful that, unlike others with autism, he never tried to leave the house or get into anything dangerous.  He just wandered – checked on the girls, checked on me and laid on his bed and “sang.”

He had piles of blankets – a nightlight – a fan – and a CD player that played the same song over and over and over ALL NIGHT.  If I turned it down or off, he would wake up.  If I turned the light off in the kitchen, he would wake up.  His door had to be open – the closet door had to be open.  And still he sang and wandered.

I can go one night without sleep without too many negative affects.  After so many, I started falling asleep, even if he was wandering – I just couldn’t stay awake any more.  After a while, my body adjusted to little sleep, but I still wasn’t in great shape!  He stopped watching TV before bed time – he didn’t have any electronics at that point in time.  He just couldn’t relax enough to sleep and he didn’t sleep during the day to make up for it.  He just didn’t need much sleep.

But his lack of sleep was causing him to gain weight and I knew it was having other affects on his body.  I talked to his doctor and we tried melatonin.  For a while, it worked really well, but then it stopped helping.  We finally decided his anxiety levels were causing him to be unable to sleep, so we tried anxiety meds.

After many, many years and many tries/fails, he is sleeping through the night.  And since he is sleeping, his anxiety levels are dropping and he is able to try new things.  He also is less likely to overeat.  I can tell him he’s had enough and he’s okay with that.

We have an evening routine that, to be honest, I don’t mess with much.  Casey takes her bath, then he has a shower.  She has her pills and a snack while he showers, then he gets his.  They either play with iPads, rip cardboard or color an hour or so and then go to bed.  We don’t do any exercising after baths – they don’t drink any caffeine (especially Casey – one glass of iced tea at supper will keep her up all night!).  The TV is on, but they don’t watch it often.

They both have fans and nightlights in their rooms.  Right now, they each have a window air conditioner (we have central air, but Casey’s room doesn’t get cool enough and the colder it is, the better Rob sleeps.)  I’ll leave the AC’s in as long as possible, just for the sleeping aide.  I don’t usually take them out until mid-October, especially Rob’s. Casey is okay for hers to come out as soon as the weather cools off – she doesn’t need the noise.

Casey sleeps with several blankets and turns a video on her TV before she goes to sleep.  She has a digital picture frame that is on all night and she sleeps with a stuffed toy.  Most nights, she is asleep by 9:45 or 10.  Once in a while, she has a hard time sleeping and she may be up most of the night.  On those nights, I have to keep telling her to stop dancing in her room.  Her thumping/jumping is right above my head!

Rob has three heavy duty sleeping bags, three really heavy blankets, two extra large lighter weight blankets, and more small fleece ones (8 – 10 is a conservative guess).  He has four pillows and doesn’t sleep with his head flat on the bed – he is often on his stomach with his forehead pressed against the wall, sound asleep.  He needs his fan and night light, but now, his door must be closed and the kitchen light off.  He doesn’t listen to music anymore and doesn’t turn on the TV.  Often, he goes to bed as soon as he realizes Casey has (monkey see, monkey do – comes in handy at times!).  Many nights, he sings for a little while, but is usually asleep by 10:30.  He needs his medications to help him.

So ideas to try:

  • melatonin – you can buy it at Walmart in extended release tablets if your child will go to sleep, but can’t stay asleep.
  • weighted blankets – or just lots of them.
  • sound machine or a fan
  • some people use essential oils such as lavender to help their child relax.  My kids are both too sensitive to odors to try this, though.
  • A simple routine – warm bath, a book, no exciting TV, and a snack (you will have to play around with your routine to see what works for your child.)
  • I just read that an Epsom salt bath could help and that you can also buy magnesium rubs to help your child relax.
  • CBD oil – but talk to your doctor first and be sure it’s legal in your state!
  • turn off all electronic devices a few hours before bed
  • quiet activity, such as coloring or reading, if possible.

Please remember to only change one thing at a time!  If you change a bunch, you won’t know what really helped your child.  If all else fails, talk to your child’s doctor about sleeping aides.  Trust me, I understand that you don’t want to give your child medication unless you have to, but sometimes, you have to – for their sake and the rest of the family!  You can’t be the best parent to your child if you are a walking zombie every day and it will become a safety issue.

 

Posted on

Autism Times Two – Who is Easier?

Autism Times Two - Who is Easier?

Last week, someone wondered whether Casey or Rob was easier to live with.  As if autism could be classified into easy or difficult!  But, the question did  make me think  – and here’s the answer.  All three kids had their quirks growing up that made me want to pull my hair out at times!  None of them were more difficult than the others – just different.

When they were little, Casey had more behaviors than Rob did.  Her  meltdowns were terrible to see and to live with.  Now, I know that she was having major sensory issues and that she couldn’t handle changes in her routine easily.  At the time, I just wanted someone to help her – or give us all ear plugs.  Casey also liked to dart away when we went places.  She even left the school playground a few times.

They were both a challenge to keep safe.  Neither had fears of anything – heights, water, streets – who cares?  Nothing can hurt them, right?  He didn’t run away as much in stores because he wanted to ride in the carts for much longer than he should have.  He simply felt safer in them – his sensory issues were beginning to show up.  I remember a day in Wal-Mart when two boys kept staring at him and making comments.  Their mom didn’t hear them, but I did.

Unfortunately for those boys, I was not in a good mood.  It had been a rough few days with little sleep and I was not in a forgiving mood.  As we passed them in the aisle, one made another comment about the “big baby” in the cart and I lost it.  I said excuse me to the mom and then proceeded to tell those boys – so she could hear every word – just why he was in the cart.

I said he had autism and the lights and noises in the store were painful and scary to him.  And that he knew they were making fun of him and that was causing him even more pain and anxiety.  I told them if they wanted to grow up to be mean monsters, they were on the right track.  Their mom was so embarrassed that they had said anything.

I’ll give mom a lot of credit – she clearly stated she would not put up with that and made the boys apologize to both Rob and me.  Then she did, too.  She was nearly crying that her sons had acted that way.  I bet they didn’t anymore.

Anyway, I think Rob’s lack of behaviors were a big reason that he wasn’t diagnosed earlier than he was.  He was simply a thrill seeking, happy, quiet little guy.  He communicated his wants without saying a lot and went anywhere we wanted to go without fuss.

As they got older, Casey’s behaviors went away for the most part.  She learned that changes in her routine were not the end of the world (and calendars helped with that so much!) and that screaming didn’t help her feel better. (Not that she doesn’t still let out a scream once in a while, but thankfully, the full blown meltdowns are extremely rare…knock on wood!  🙂  )  She has always been more self-confident in herself.  She firmly believes she is who she is and if you don’t like it, tough.  She doesn’t seem to care about having friends.  She has us and that’s enough for her.

Rob, however, wants people to like him.  He wanted friends when he was little and thankfully, he had a great group of little boys who accepted him as he was and made sure he always had someone to play with at recess or someone to sit with at lunchtime.  He gets upset if he thinks someone is angry with him and his anxiety goes through the roof.

He doesn’t seem to care as much about having friends, now.  He knows who likes him and he’s happy with that.  He goes places with groups from the workshop and will tell me who is his friend from there.

Each of them have their own difficulties in life.  His anxiety and sensory issues (including weather changes) make it harder to take him new places or get him to try new things.  She is more demanding than he is and more likely to get upset if something doesn’t go the way she wants.  He rarely gets angry – she rarely gets her feelings hurt.

His sensory issues are harder on him than hers are on her.  She plugs her ears and is good to go.  He can’t eat certain textures without gagging, or wear certain  materials.  He gets hot easily – she is usually cold, eats almost anything and has more clothes than anyone needs.

It always amazes me what people will ask.  I’m here to spread awareness of autism and other special needs, but some questions are just crazy!  Would you ask someone with typical kids who was the most difficult of their children?  Probably not, but because they have autism, it’s okay to ask.  I’m actually okay with the question – it just struck me funny for one simple reason.

When I get asked about living with autism or their behaviors – anything like that – I always have to laugh to myself.  I would much prefer my life to many others!   I’m excited when my kids talk back to me (they talked appropriately – YES!).  When my kids have behaviors, it’s not them being brats (like so many “typical” kids!), it’s sensory issues.  (usually – there are times when they are just being turkeys!  🙂  )  I know where my kids are – no late night worrying (well, not about where they are – there are always late night worries!), no driving or insurance.

Autism doesn’t make one child more difficult than another.  Just like everyone else, they all have their own issues to deal with (sometimes, I think people forget that everyone has issues – not just those with special needs!) and some issues are more demanding than others.  Casey, Mandy and Rob all brought equal amounts of stress and love, sleepless nights and happy hugs, smiles and tears to our family.  They are all amazing and I wouldn’t want to change any of them!

Posted on

How Autism Alters Birthday Expectations

How Autism Alters Birthday Expectations

In just a few days, Rob will be 26. Casey is more excited about it than he is – at least, so far. She wants cake and ice cream and balloons and presents. He wants to eat Long John Silvers for supper.

Rob doesn’t like being the center of attention. He likes opening presents, but won’t tell anyone what he would like. It’s almost like he thinks the presents just appear. He knows who gives him what, as the kids are expected to write thank you notes after receiving gifts (yes, probably an old-fashioned idea, but I insist and they do them without any fuss.) I help them by writing “Dear — ” and then they do the rest. Usually very short and sweet, but I think it’s important.

Anyway – he wants “presents” for his birthday. Any suggestions I give him as to what he might like, he just repeats. I struggle every holiday and birthday because I desperately want to give him things he wants. When he was little, it was easier – blocks, trucks and anything with ABC on it. Dr. Seuss books, Power Rangers, Wizard of Oz – all sure bets. Now, it’s harder. He used to want CDs or DVDs but he watches/listens to everything on his iPad now.

While he doesn’t completely understand gift cards, he does know that when he gets one with the golden arches on it, he gets to go to McDonald’s. And finally, a year or two ago, he understood the idea of money and being able to go buy what he wants. And I’m letting go of the idea of spending money just so he has something fantastic (to my way of thinking anyway) to open.

Because a week or so ago, I was looking through my scrapbook of the kids’ birthdays and I found his 10th birthday. You can sense my excitement over that day even now, as that was the first year he asked for a party! We had always had his cousins come over, but he never cared at all. He would open the presents, blow out candles on a cake he didn’t want and hide in his room.

But – that year! He wanted hamburgers and he wanted kids to come and swim with him. And we went all out for it! He had his cookout and they went swimming (until a storm blew in!). He opened presents and they went swimming again. Every picture of him that year shows a big smile on his face. He was playing with the kids (true, they were all in the pool together, not really one on one but he was having fun!).

I noticed something else about that year. I had listed his favorite presents – 10 packs of crayons and a jar of dill pickles. So simple, yet he was excited enough to hold them up to the camera so I could take a picture.

Every time it comes to buying presents for him, I tell myself (and I wrote it in this blog at Christmas!) that I’m going to buy stuff he likes. And I do, but I feel guilty if I don’t spend as much on him as I do Casey, Mandy and Cory. I know he doesn’t know the difference, but I do. I can tell myself a hundred times to let it go, but it bothers me.

This year, I bought him a few more street signs for his room, some clay to cut up and an ABC banner to hang up or rip up (it was only $1!) And I’m going to give him money to go to Walmart and pick out what he likes. Maybe a huge jar of pickles (I hope he’ll share!) or 15 boxes of crayons (which he doesn’t use anymore – his stockpile numbers close to 1,000 crayons now) or maybe he’ll buy packs of paper to rip up. It will be his choice, not mine.

Birthdays are a big deal to me.  I like making the birthday person feel special on their day and autism has an affect on that expectation.  I want to celebrate and buy the perfect gift.  I want to make the day awesome.  Casey is much easier to do that for – she loves everything about birthdays.  Rob, not so much.  He enjoys presents, but doesn’t appear to care what he gets.  He wants to pick where we eat supper at.  He wants Mandy and Cory and Grandma and Grandpa to come.  And he wants to disappear into his room as soon as possible.

I worry that he really wants something, but doesn’t have the ability to tell me.  Then I worry that he’ll be disappointed when he doesn’t get that special gift.  (Yeah – I worry too much at times!  🙁  )  Rob will know it’s his birthday because I will wake him up singing, but otherwise, he’ll go to Hopewell and be thinking about supper.   He won’t tell me his birthday or how old he is.  (He looks at Casey and waits for her to answer for him!)

So birthdays are another part of life that gets altered because of autism.  I have to let go of the idea I have of a perfect day for him and make it his idea of a perfect day.  It won’t match mine, maybe, but if it makes him feel special and happy, then that’s what we’ll do.

Happy Birthday, Robbie-Dodger – my little boy in a grown-up body, who still loves his Power Rangers and the Wizard of Oz, who loves ripping paper and magazines, who loves french fries and tacos and thinks his sisters (and Cory!) are the coolest people in the world.  I promise to make your day just what you want!   🙂  🙂

Posted on

Back to School with Autism

Back to School with Autism

This is the first year – ever – that Rob hasn’t asked about going to school.  He graduated in 2011, but every August, he asked about River View and Mrs. Shrimplin and Mrs. Barb and so many others.  At first, I thought he just missed the routine, but then it became more of a “I don’t have to go, right?” question.

He and Casey both still talk about the teachers and aides that they had.  They name them off by year (and to be honest, they remember more than I do, as they mention teachers that were at the school that they liked) and Casey will tell me their birthdays – and the birthdays of some of the kids that were in her classes.  Rob had a group of buddies in elementary school that watched out for him and helped him when he needed it.  He still talks about them and once in a while, will look at a picture book to see those boys.

I recently saw a post –  brace yourself – where an autism mom admitted she could not wait for school to start!  Can  you imagine?  Someone admitting that she needed a break from her child, even with the stress of school days?  So many parents commented that they dreaded school and would rather be with their child all of the time.

While I do understand that idea (after all, if your child is with you, you don’t have to worry about them – they are safe with someone who loves them!), I am all for getting a break when you can.  We had a rough couple of years of school and I was ready to say the heck with it and home school the kids.  I was beyond sick of paperwork, of worthless professionals, of day to day crap of trying to explain autism to people who didn’t seem to give a damn.  The hardest part was seeing the teachers that we loved and respected having an even harder time.  It just wasn’t worth it.

Then I really thought about it.  I needed those few hours every day to breathe.  I needed to be able to sit down and not be constantly on watch.  I was fed up with issues at school, but I knew, deep down, that I couldn’t teach the kids.  I mean, I could have taught them, but I would have been even more exhausted than I was.  I knew that pulling them out of school (and that includes Mandy!) was always an option to fall back on.

So, let me be a parent that says “YAYYY!  It’s time for school!”  Did I miss them?  Yep.  Was I happy when they had days off?  Yes.  Did we have fun things to do?  Yes.  But – I was able to plan those fun, crafty, lazy days because I wasn’t sleep-deprived and stressed.  If you are excited to watch for the school bus, admit it!  Honestly, I think most parents are, but you aren’t supposed to admit it to anyone.  Ugh – admit it to me!  I won’t tell a soul that you are ready for a morning nap and to eat a quiet lunch.

I know how stressful school is for you when you have a special needs child.  Worrying about their safety and whether they are happy is constantly in your mind.  But I also know you can handle the stress a little better when you have  a break from autism for a few hours.  Don’t feel guilty.  We all put too much guilt on ourselves (I do this – I feel like I haven’t done nearly enough with the kids this summer – even though we’ve done what they wanted and then some!).  Summers just fly by.

Try to reduce some of your stress by meeting your child’s teacher as soon as possible.  Bring pictures and tell the teacher your concerns.  Or make a list of “quirks” your child has so the teacher is ready.  Make sure you share as many good things as negative!  Even on the toughest days, there is some tiny little thing to be happy about.

Ask the teacher the best way to communicate.  Email?  Quick texts?  Be sure they understand that you want open communication – that you want to know what’s happening with your child.  Some teachers worry about telling negative things, and I understand that, but if you don’t know about behaviors, how can you devise a plan to deal with them?  And, the sooner you know, the better.

Be honest with the teacher.  If there is a stressful event at home (a death or a divorce, etc), tell the school.  More than likely, your child will be affected and they can’t help if they don’t know about the problem.  You don’t have to share private details – just the simple fact that something is going on at home.

Be respectful!  This goes both ways – teachers need to respect the parents’ wishes as much as parents need to respect teachers.  Don’t talk negatively about the teacher/parent when the child may overhear (and remember, many people with autism have amazing hearing!)

If you feel there is a problem, talk to the teacher/parent!  Don’t wait until the issue is beyond fixing!  If you simply can’t agree with the teacher/parent, it may be time to bring in the principal or someone else who can mediate the problem.  Remember that, most of the time, you both want what is best for the child!  Work together to find what works.

I hope each of you finds wonderful teachers and new friends for your children as you start this new school year.  Enjoy that small break from autism!