Author: jsjones116@yahoo.com

Jen is the mom of three amazing adults. Her oldest daughter and her son both have moderate autism. She is a freelance writer who is passionate about spreading awareness and hope to families with special needs.
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Autism and the Excitement of Christmas

Autism and the Excitement of Christmas

This time of year can be especially difficult for families with autism.  So many people with autism rely on schedules to function each day and the holiday season with all of the extra activities can throw anyone into a meltdown.  (Even a few “normal” people!  🙂 )   Casey used to have a really hard time each December, but now, she’s just excited about everything.  Rob takes it all in stride – he’s pretty mellow about things, but his anxiety can be higher when he doesn’t get enough downtime.

We started our season a few weeks ago by going to our town’s Christmas parade.  It had been several years since we went to one as the kids are usually at camp that night.  Casey was beyond excited – she was going to see Santa on a fire truck and couldn’t stop giggling about that.  Rob was happy to go because Casey was happy and Mandy and Cory were coming!

He even put a hat and gloves on (mostly because Casey did!) and sat quietly under a blanket while we waited.  He did let out one yell, but when Cory reminded him he was hurting ears, he settled down again.  He was happy to sit and watch all of the lights – until one of the trucks pulling a float blew an air horn!  He jumped a foot and covered his ears as tightly as he could.  It has been years since I’ve seen him affected so strongly by a noise (I’m wondering if the ear problems he has had this year could have contributed to him being more sensitive to sounds) and I felt terrible.

Rob tensed up every time a truck came near us.  Mandy and I took turns covering his ears for him so he could relax.  Unfortunately, the excitement of seeing Santa was dimmed for him by the realization that there was an entire line of fire trucks coming towards him.  He loves fire trucks, but was so scared about the air horns blowing unexpectedly that he couldn’t really enjoy it.

Casey, however, was almost bouncing in her chair!  Santa was coming!  And he waved to her!  She couldn’t take her eyes off of him and the smile on her face was priceless.  She watched until she couldn’t see him anymore and asked if she could go talk to him soon.  (That’s on our list of fun things to do!)  I told her we would go to the mall and see him.

The day after Thanksgiving, we start decorating for the season.  Boxes were everywhere and Casey couldn’t wait to get her tree up.  I told her she needed to put her laundry away first and she did it in record time.  Their trees were up and stockings hung in their rooms.  They both love going to sleep with the tree lights (pretty and calming!).

We have a list of places we want to visit during the month.  Drive-thru light shows are always a great way to spend an evening (Never have to worry about the weather, crowds or anxiety!) and I’ve found a few new ones that we’re hoping to make it to this year.   Several of the zoos in the state do extensive light decorations, too, so that’s another option.  Casey just can’t wait for all of it!  She is constantly bringing me her calendar to ask for specific dates for activities.  It’s hard for her to understand that the weather is a factor and some things can’t be planned too far in advance.

One of the decorations that make our home special is the picture with this post.  Look carefully and see that Baby Jesus is being guarded by a Teenage Mutant Ninja Turtle.  Rob got this turtle years ago in a McDonald’s Happy Meal and insisted that the turtle watch over the baby.  Every year, he looks for the turtle and places him near the baby in one of our nativity sets.  Rob kneels down and makes sure the turtle is in just the right place and that’s where it sits until I pack away the set for the year.  Rob checks each time he walks through the room to be sure the baby is still being guarded.

We stick with family gatherings and are so lucky that our family understands that Casey is deadly serious during the parties until the checklist in her head is complete.  First, you have to eat, then open presents, the take a family picture, then play games.  And when the games are played, she can smile and laugh because she is happy that everything was done and was just like the year before.  Rob joins in for parts of the party, but he also escapes upstairs to a dark, quiet room when he needs to.

I have a lot of ideas in my head of things I want to do during the Christmas season.  At times, it’s hard to balance what I know Casey would love with what Rob would enjoy.  She went to see The Nutcracker last week (my niece dances in it every year) while Rob stayed with me.  She wants to see Santa, while he probably could care less.  (She firmly believes in Santa – Rob will believe because she does, but I’m not sure he truly does.  He just won’t ruin it for her.  Empathy at it’s finest!)  She wants to make crafts and he might join in for a little while, but it doesn’t really interest him.

She wants to bake cookies.  He doesn’t care for them.  They both like to shop for presents for others – he tends to be more serious in his choices.  She knows who she wants to buy for and will grab anything at times so she can be done and look for things for herself.  They both love to wrap their gifts and watch people open them.

It’s also hard to balance what I want to do with what is best for them.  We can’t do too much in the evenings that may disrupt their night schedule or they may not sleep.  Long days away from home make it hard for Rob to relax when he gets home, so how far we can travel is a big factor in what we do.  You will have to try to balance what you want to do with what is best for your little one.  Even if they enjoy the activity you plan, will they be over-stimulated to the point that anxiety gets too high?  Will they be able to calm down when you get home?  It’s exhausting to try to think about all of the “what-ifs” when you plan something new!

While it may seem easier to just stay home, what if you tried and it went perfectly?  What if everyone has fun and you create memories that you never thought you would have?  You have to give your child a chance to be successful – even as you dread the possible meltdowns or stares from other people.  You will never know until you try!  Take those baby steps and venture out!  I know Casey and Rob are constantly surprising me with what they are able (and want!) to do now!

Start your own traditions for the season.  Your ideas may seem odd to others, but who cares?  They are for your family – your children.  Take drives to look at lights.  Make some gifts.  Bake.  Decorate as you need to.  Buy the comfy clothes your child needs to enjoy a party.   Try to relax and enjoy special events.  Find a babysitter (yeah – not easy, I know!) and leave your little one at home if you truly know they won’t enjoy what you are going to do.  (Let go of that guilt, too!)

I hope your holiday season is full of excitement, fun, love and laughs!

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Welcome to our Loud, Crazy Autism Home

Welcome to our Loud, Crazy Autism Home

Yesterday, I came across a meme created by Joy of Autism  (if you haven’t checked out her page, yet, you are missing something!) about welcoming people into her home – and reminding visitors that their home is her son’s safe place, to truly be himself.  I shared it on our Facebook page and was surprised at the response from everyone who saw it.

When we are at home, Casey and Rob are free to be themselves.  While I do remind Rob to use a quieter voice, at times, when Casey is trying to sleep, for the most part, I let them be.  They do so well at holding it together every day while out in the world – they need to be able to come home and just relax.  I do the same thing.  It’s usually only a few minutes after I get home that I’ve got comfy clothes on and I’m ready to chill for a little while.

Visitors to our home know that Rob may be singing his anxiety song or fairy dancing through the house.  Casey might be stomping her figure eights upstairs and trying to sneak into the refrigerator.  They know that I’m glad they are visiting, but I’m also always aware of what the kids are up to – that I may jump up at any time and go check on them.  Strangers who visit for the first time can either accept that or leave.  This is OUR safe place and we make no changes for others.

I remember when they were little and Mandy had friends over.  Whenever Rob took his shower, she would make sure her friends were safely upstairs, as modesty was never Rob’s strong suit.  Now, he wouldn’t dream of leaving the bathroom with no clothes on, but he may venture out without completely pulling on his pants.  We’re used to it, so if we do happen to have company, I try to position myself to block any view.  (He comes right to the kitchen for his pills and snacks after his shower.)

Casey could care less who sees what.  I have tried over and over to remind her she needs to be dressed when she leaves the bathroom, but if she got her weekend-after-bath slippers instead of her weekday-after-bath slippers, she’ll run to her room to make the switch.  (She has several classifications for slippers – and she refuses to wear a pair of slippers that aren’t right.)

So, when you visit, if I seem to be standing in the door between the kitchen and dining room and looking over my shoulder for a long time, I’m just making sure you aren’t treated to a sight you can’t unsee.   🙂   When we had the pool, Casey and Rob both would yank their bathing suits off on the back porch so they wouldn’t get the floor wet.  They never cared who might be driving by.

Rob might be ripping paper and rocking in his recliner.  He might be making noises that you can’t understand, but I do.   It’s okay if you admit you can’t understand.  It’s not okay for you to think I need to change him while you are here.  That ain’t happening.  Casey might be sitting on the love seat and playing with her iPad.  If she has it too loud, I’ll ask her to turn it down – but I won’t ask her to leave the room.

I won’t ask her to take the blanket off of her head so you can talk to her.  She’ll hear you just fine – say what you want.  I won’t ask him to come out of his room while you visit.  He’ll come out if he feels like it.  You are welcome to peek in and say hi to him, but know that he may not answer you.

It’s hard to let people into our safe place.  Any time someone new comes in, I am nervous, as you never know how people will react to autism.  I don’t think anything about it, but for someone who isn’t around autism, our routines and quirks can seem odd and not worth the effort.  (Our schedule is worth the effort – trust me.  Life without our routine is not fun.)  I can’t change our routine for you.  It’s simply not worth it to me.  At times, a slight change can keep the kids up for hours and I need sleep.

Other times, you may not notice anything odd about our home.  When the kids are having good days (and most are good!), autism isn’t obvious, unless you know what you are looking for.  On other days, you may see/hear the kids stimming to relax.  You may find their habits weird and that’s okay as long as you remember they are doing what they need to do to make sense of this crazy world.  You are welcome to ask questions.  You are not welcome to tell me how to change our world.  I will show you the door.

I’m sure that sounds terrible, but you knew about the autism before you came to our home.  If you have some experience with it and offer a few ideas that you have tried, thank you.  If you are nervous, that’s okay.  If you really want to know us, welcome!  If you are just nosy, go away.  We don’t need you.

Please, parents – let your kids be themselves – especially when they are at home.  I know you may not want some people to know just what your life is like, but really, what harm can it do?  If you are embarrassed, try to relax.  Your visitors should understand and, if they don’t, do you really want them around your children?  You are their protector, their advocate, the one they run to when they need help.

Home is their place to just be them.  We love to have visitors, but only ones who understand that we do live in a circus and we love it that way.  Accepting our wild lives is the best gift you can give us this holiday season!

 

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Autism and the Different Therapies we Tried

Autism and Different Therapies

A few weeks ago, I mentioned in one of my posts that Casey and Rob had taken Equine (Horseback) therapy and I had a few questions about how that helped the kids and what else we had tried.

Casey and Rob both started with speech therapy early.  I drove Casey to a city about 35 miles from us twice a week when she was 3 to get speech therapy.  It was the closest place for us.  Once she began preschool with our local school district, she got therapy there and once a week the therapist came to our house.  Not only was this lady an amazing speech therapist, but she had some experience with sensory issues and taught me a few tricks that I still use today with the kids.  (Thanks, Connie!)

Rob started getting speech at home, along with a preschool teacher who visited.  Both were once a week when he just turned 3.  (Mandy was still in the preschool class he would be starting, so we thought it best for her to finish the year and have him start the following fall.  With his late August birthday, he would still have two years of preschool.)

Casey continued with speech therapy when she started Kindergarten and was seeing the therapist twice a week and for group time.  Our local hospital finally had a speech clinic by this time, so I took them both every week for one on one at the clinic.  This lasted about a year, until the hospital lost the therapist.  Several years later, I would again be taking them to that clinic for speech.

Rob went to our county board of DD Kindergarten instead of going to our local school district.  The teacher he was supposed to have was one that wasn’t good for Casey and I refused to let her near him.  While he was in Kindergarten, he started Occupational therapy, along with speech.  When the school district hired an OT, Casey started seeing her, too.  (OT can be a wonderful tool to help with sensory issues!  Neither Casey or Rob had many issues with fine motor skills, but the sensory play they taught helped so much!  Thanks, Deena, Steve, and Brooke!)

We discovered that many of Casey’s meltdowns were from sensory issues.  She was simply overwhelmed by sounds and couldn’t help herself.  She didn’t have the words to tell me what was wrong, so she screamed and cried.  (Don’t misunderstand – some of her meltdowns were schedule changes, too, or my changing the routine that she so rigidly followed!)  I learned that piles and piles of blankets were an absolute necessity for both kids to be able to calm down enough to even think about sleeping.  (We still had sleep issues, but screaming wasn’t one of them – finally!)

Rob needed deep pressure to stay calm and control his anxiety.  He was terrified of loud noises (School bathrooms were a nightmare for him!) and he wore ear protection for most of his elementary years.  Not only did the head set block (he wore a set of hunter’s ear guards) the noise, but it added deep pressure to his head and he didn’t feel the need to squeeze his jaw as often.  He wore a weighted vest when he was at school and also had a weighted lap blanket for days he needed even more.

It was suggested that a swing may help him even more and the school purchased a large platform swing for his classroom.  Beth (his one on one) figured out that he could do math and spelling quickly while he was swinging so she worked with him while he laid on the swing.  Spelling was always easy for him, but although he could do the math, it had little interest to him.

In 2003 – 2004 (I can’t remember, exactly!) we found out that an equine therapy group had been started.  I knew the couple who started it and decided to take the kids one evening to see what it was all about.  I knew Casey wouldn’t like it, as she was scared to death of animals, but part of the therapy was petting and brushing your horse and I thought she might get close enough to touch one.  I also knew Rob wouldn’t be a problem – my little daredevil would try anything.

I was shocked when Casey climbed into the saddle of the horse before she was even asked if she wanted to ride!   There was a person walking on each side of the horse and another one to lead.  She sat up so tall and looked like she had been riding her entire life.  Rob jumped on a horse, too, and soon gave the volunteers heart attacks as he leaned too far one way and then the other so he could watch the horse’s feet.  I assured them he wouldn’t fall, but it took a few weeks before they believed me.

During their therapy, they had to complete different games from their horse’s back.  They threw basketballs, tossed beanbags and rings and had to stretch to ring bells.  With the beanbags, the holes were different shapes and colors and they were told which color/shape to aim for.  Rob had a deadly aim, even as he barely looked at the board.  I soon learned that while they were on their horses, they could do things that they couldn’t do normally.  They both knew their right from their left hands (After years of doing this on horses, they still can’t tell me when they aren’t on one.  Or they simply don’t care!  🙂  )

They could answer simple questions and practice their spelling words.  We practiced math facts – anything to keep drilling those lessons into their heads.  (and strangely enough, the spelling and math stuck with them when they weren’t on their horses – it seems only right/left didn’t matter).  Because there was a large group riding, the evening also became something of a social event for me.  I could talk to other parents of kids with special needs as we took turns leading horses or walking with the kids.  It was great knowing that Rob’s squeals or Casey’s obsession with socks wouldn’t be an issue!  (By the way – Casey’s horse was named Socks – how appropriate is that?)

After more than 12 years of riding, we stopped horse therapy for different reasons.  I had developed a severe allergy to the horses and could no longer be near enough to help (even with medication, there were times I could barely drive home) and the kids seemed to be losing interest in it.  It had become something that “had” to be done instead of something we all enjoyed.  If you have equine therapy close to you, please consider trying it.  It was a great experience for us.

Rob takes aquatic therapy every two weeks at the hospital to help with his anxiety and for something he loves to do.  Insurance will only pay for 26 visits a year, but we are both thrilled with that.  He loves going and he loves his therapist (Thanks, Erin!) and is always excited to tell me what he did that day.  I did have to warn her that he would sink to the bottom and sit and not to worry about him, but it did still freak them out the first few times he did it.  (It seems he will never come back up as he sits down there and grins up at you!)

There are so many therapies available to help people with autism, now.  I do the same thing with therapies that I do with meds.  I think about what good can happen, what side-effects can happen and the expense.  And I ask the kids if they want to try. Sometimes, the answer is no, and that’s fine.  I wait a few months and ask again.

ABA became popular when my kids were a little older and there was no one in our state able to provide those services.  When I taught preschoolers with autism, we used the ABLLS system and I did a lot of that with Casey and Rob, even though they were much older.  They both enjoyed the little games and I’m sure it helped some.

As with anything else concerning your child with autism, follow your gut instincts when considering a new therapy.  You will know quickly if something is working (or not working!) for your child.  Find something fun with a great therapist.  And if you would like to hear more about our experiences with the therapies we tried, send me a message!  🙂

 

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Autism and the Wandering Child

It was in the news again the other day. Another child with autism wandered away from school. The scary part was that he left the school and it was an hour before they knew he was gone. From what I understand, they only realized it when his mom called and asked where he was. The teacher was a substitute (not an excuse, however!) and he left.

He was found by a kind stranger who got him to safety after he crossed a busy street in front of her. When he couldn’t answer her questions, she called the police only to find out no one had reported him missing. As she waited for an officer, she posted his picture on Facebook and a friend of hers happened to be the boy’s mom and contacted her. Can you imagine finding out on Facebook that your son was missing?

I cannot even begin to imagine how that mom felt. I would have been beyond furious – especially when I discovered the school didn’t even know he was missing, yet – and it had been an hour! The anger and the hurt and the fear – this was a place where her child was supposed to be safe!

I understand how quick kids can be – even typical kids! Kids with autism can be determined and typical things (such as locks) may not deter them. I was lucky. Casey wandered off the school playground once but her teacher was right behind her. Rob left the yard once. We live across the street from a ball field and for a while, he loved nothing more than carrying his bat, ball and glove around. He saw a bunch of boys playing, grabbed his things and crossed the street. (I had stepped into the garage for less than a minute!)

Neither on mine tried to leave the house at night. I know so many people with autism are wanderers and nighttime does not deter that. Nor do locks. I have heard many people say there is no way they can get out of locked doors and I can tell you – they can. They seem to understand how the lock works and how to open it. Don’t believe me?

I had a bicycle lock that had four numbers you needed to line up in the correct order. I never let either of the kids see the front or back of the lock as I opened it. It took Rob less than three days to pick that lock. I had no idea how he did it until I bought a combination lock. I was sure he wouldn’t be able to figure it out. A few days later, I saw him holding it and studying it closely as he turned the knob. The lock opened in his hands. I still don’t know if he heard it or if it jumped a little when the right number was found.

I gave up with locks like that and began to use ones with keys. The funny thing is – he will look at the key and not pick it up to use it. Casey, however, can smell those metal keys. No matter where I hide them, she finds them. I carry them with me when I need to. When I ask how she finds them, she laughs. I guess she isn’t interested in giving away her secret ability!

I know many families who have alarms on bedroom doors and doors that lead outside. The doors and windows are locked up tighter than a maximum security prison and still the person with autism can escape. It’s an uncanny ability and one that scares parents to death. How can you keep a child safe when nothing will stop them?

There are many systems available now where a bracelet or anklet is put on the person with autism. This bracelet makes it possible to track the person and seems like an amazing invention – except that many people will simply remove the “can’t be taken off” item and leave it. I have no doubts that Rob would take off anything like that that I tried to put on him. Casey might leave it on if I tell her it’s jewelry. But it’s hard to depend on a system when you aren’t sure if your child will leave it on.

Wandering is one of the scariest things about autism. People with autism are drawn to water – to places that aren’t safe. And, most of the time, they won’t answer when someone calls their name. To be found, they need to be spotted, not heard. I know how quick my kids have been (and still are!) and every time I leave the house with them, I probably look like a secret service person as I constantly watch where they are and what might attract them enough to cause them to leave my side. It’s hard to relax when you need to be constantly on guard.

I can understand how a child can wander from a school. I know they are quick. What I can’t understand is how a school can not know for an hour a special needs child is gone. Don’t they have procedures in place as the students walk from place to place? When we walk our preschoolers to the bathroom, we count when we leave the room, when we get to the bathroom, before we leave the bathroom and when we get back. Why wasn’t that class counted? Why wasn’t the teacher warned he may wander away?

Playing the blame game helps no one – except that talking about how easily a person with autism can get away might make more people aware of the problem. Maybe they will be more aware and more watchful.

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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.

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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.   🙂

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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.

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Autism and the Questions I Never Asked

First, I have to say, the above picture is one of my absolute favorites of the three kids together. It has been hanging in my kitchen or dining room since it was taken – 14 years ago! I realize you can’t see the kids’ faces, but I just love that they are walking hand in hand and completely in step with each other on a beach that they love going to. Autism isn’t obvious, unless you know the kids.

That really is a snapshot of how they grew up. Mandy was in the middle and guiding Casey and Rob towards fun and safety. She never seemed to notice how different they were from her friends’ siblings or that her life was very different in ways, because of autism. The kids weren’t always in such perfect step together, but they were always together.

I am always bragging to people at how amazing Mandy and Cory are to Casey and Rob. There are so many siblings that simply have nothing to do with the person with autism and I thank God every day that my kids are close. I just can’t imagine the pain a parent would feel knowing that autism kept the family from being close. Mandy will say how great her childhood was and, in many ways, I think it was. But – there are questions I never asked her, because I am not sure I want to hear the answers.

Like – did she ever notice that we didn’t go many places as a whole family? Did it bother her that many times, she only had one parent at her school events? (yes, I know many children have only one parent at events, but I’m thinking just of her. 🙂 )

Did she ever notice that so often when we played Barbies or horses or Power Rangers that I never got too far away from the top of the stairs so I could hear what was going on downstairs? Did she notice that I was distracted as we played some days?

Did she feel left out when Casey and Rob went to therapies? I know she didn’t like that they had horse therapy, at first, because she so loved horses and she wanted to ride, too. When she got a little older, she volunteered with the riding club, but I still regret that she didn’t get to ride when she was the one who loved horses so much.

Did she get tired of sharing a room with a sister who had meltdowns often? or who couldn’t sleep many nights?

I know there were times she was furious with Casey and Rob. There were times they took something precious to her and broke it or just got on her nerves. But did she resent the way I handled those situations? I could tell Casey and Rob not to touch things that weren’t theirs, but in reality, their impulsiveness overrode any words I could say. I never felt I handled those times right – I tried, but I don’t think she truly understood that I knew how upset she was – there was just little I could do, except cry and hope that she didn’t grow up to hate her brother and sister.

Did she notice how many times Casey and Rob’s needs had to come before hers? When they were little, I hoped every day that she would never feel like she wasn’t just as important as the other kids, but it was (and still is, at times) a worry I can’t shake.

Did she have plenty of time to just be a kid? And not have to help keep an eye on Casey and Rob as we played outside or ventured to a store? Did she have enough freedom to just be her – Mandy – and not their sister?

Did I make sure they all followed the same rules? I hope so – I tried – but I wonder, at times, if I was more lenient on Rob, because he was the baby, not so much because he had autism. I suppose that’s something every parent worries about, but when there is a special needs sibling or two tossed in, it’s even harder.

It seemed some days that my entire day was dealing with autism in one way or another. Those nights, I would fall into bed and feel so guilty that Mandy didn’t get the few minutes of attention I wanted to give her. (Autism mom/dad guilt just sucks, doesn’t it?) I hated that I couldn’t spend the whole afternoon playing games with her without constant interruptions from autism.

Did she resent it when I asked her to watch the movie Casey or Rob chose, even though it was her turn? It didn’t happen often, but some nights, I just couldn’t deal with the thought of another meltdown from Casey because her movie wasn’t on when she got out of the bath. Luckily, Mandy and Rob tended to be obsessed with the same movies (except Willy Wonka – she never got into that one like he did!) – like Wizard of Oz and the Power Rangers – at the same time. And even luckier, Rob did whatever Mandy wanted so he was happy with anything she chose.

Did she get tired of our routines? Or did she like that she always knew what was going to happen?

I know every parent has questions like this, whether there are special needs family members or not. This is just something I’ve been thinking about the last few days – I’m not sure why – maybe because I was looking at pictures from when they were younger and thinking about how many times Mandy had to jump in and help with Rob when Casey was having a meltdown. Or look for Rob when he climbed somewhere and we couldn’t find him. And those thoughts led to the questions.

Casey, Mandy, Cory and Rob are close now. While Casey loves Mandy and Cory, Rob takes that love to an adoration. He is still the same little boy who would follow his sister wherever she wanted to go (and I have pictures to prove it!) and now he follows Cory that same way. Now, I know she doesn’t resent her siblings, but when they were little? I’m sure there were times she hated autism – same as I did. I am sure she never hated Casey or Rob – just the actions that were caused by the autism.

I wish that every person with autism had a Mandy and a Cory in their lives – that every family could be as close as ours. Despite my guilt at not always being the mom I wanted to be for Mandy, I know how lucky we are to have each other.

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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.

 

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Autism and Spinning – A Day at the County Fair!

Autism and Spinning - A Day at the County Fair

 

I can’t believe that it’s fair time here already and that tomorrow, “September will be all done!” as Casey says. I’ll admit it – I am usually excited about taking them to the fair, but this morning, I just wasn’t into it. They were excited – I was dragging and grumpy.

It’s a beautiful day here. Amazing blue sky and perfect temperature to wander around the fairgrounds. When we left home, they were both wearing jackets, but I told Rob he better not wear one (I didn’t want to carry it all day!). As soon as he saw Casey had hers, he had to have his, too. When we parked, I tried to convince him to leave it in the car, but nope – Casey still had hers on, so he had to be like big sis. We walked across the parking lot and I told him to take it off if he got too hot. And he did. So back to the car we went to drop it off. And I got grumpier.

I also knew that the two rides that Rob loves more than anything weren’t at the fair this year and I had been worried all night how he would react when the big boat and the other platform swing wasn’t there. Those rides calm him down so much – I just knew he would be anxious when he didn’t see them.

And, of course, he proved me wrong again. He never even asked for them. They both carefully looked at their choices of rides (these are big decisions, you know!) and started taking turns choosing what to ride next. When Casey chose the Super Loop, i knew he wouldn’t ride it – he absolutely hates any ride that goes upside down. She got in line – and he followed. I pointed at the ride and asked if he wanted to ride. “Yes, pease.” So… I backed away, knowing this was a bad idea.

They were the only two on it. I couldn’t watch as it began it’s slow circle up and back – until they were upside down and it continually went in the circle. Ugh! I snapped a picture, then couldn’t watch anymore. I wasn’t sure if Rob would gt sick on the ride or after. Or if he would be too scared to climb off of it.

You guessed it. He loved the darn thing – couldn’t wait to get back on it again. I’m not sure how many times they rode it. I thought maybe he would follow Casey onto every ride, but nope – the Drop Zone was a definite NO. (It pulls riders up about 20 feet and drops them) He didn’t even say his usual “yes, pease, no fanks.” It was just NO. So she rode it a few times on her own and they went on having fun together.

We did have one rough time. They needed to go to the bathroom and instead of going to the one where the entrances of the men’s and women’s are together (and it’s small – I would know if anyone was in there with him), they ran the other way and he darted into the huge men’s bathroom before I could stop him – and she started going to the women’s entrance – at the other side of this 30′ building. I panicked – how was I going to be in two places at once? So I as I was running back to the men’s entrance, I was pulling out my phone to call Mandy (she was working in a close building) so she could come and wait for Casey while I got Rob.

Somehow, he managed to get in and out in of the bathroom in the few seconds it took me to get Casey to the other bathroom. He was standing on the sidewalk, looking more than a little lost. I’m always where he can easily see me when they come out of the bathroom or off the rides. It must have scared him a little because as soon as he saw me, he leaned his forehead to mine. I felt so bad! More rides cheered him up, though.

The more the ride spun, the happier they were. Big circles, little circles, up and down circles, bouncy circles. They loved it all. I had a hard time even watching some of the spinning they were doing! I’m so glad they love it as much as they do – and that the spinning helps their sensory issues. Some kids get more wired after spinning, but both of them calm down.

If you have a child who loves to spin, try putting them in a swing and twisting it around and around and letting go. Or you can buy a scooter board (basically a piece of plywood with casters on each corner) and have them sit as you spin them around. Or a Sit and Spin toy works wonders, too. The whole point is to find something safe and appropriate for them to use to get what their body needs, or they will go looking for it – and you may not like what they do!

When they were smaller, going to the fair was hard. Rob and Casey both had a tendency to run off and in crowds, it’s terrifying to me. I kept a tight grip on them. Today, when we first got to the fair, they were both walking beside me and looking around. By the end of the day, they were holding onto me in their typical ways – Rob holding my right hand and Casey holding my left elbow.

That’s how I knew it was time to go. When the anxiety and stress of the crowds start getting to them, they seek comfort and security. So we did our usual – one more ride, a stop at our favorite French fry stand and headed home. As much as they both love being there, when it gets too crowded, they are done.

I hope that each of you gets to experience amazing, fun family days like we did today. It didn’t take long watching them have fun for my grumpiness to go away. It’s just awesome to me that they are both able to enjoy an activity like this together. As they got on and off rides, they watched out for each other and waited, so they were always together – just like close-knit siblings. I had tears in my eyes once or twice watching one help the other with buckles or belts as they settled in for a ride.

It’s days like today that remind me autism isn’t always so bad. Yeah, we have rough days and nights at times, but – I have also have three kids (and Cory!) who are very close and love each other more than anything. Isn’t that really what every parents wants?