Tag: autism parents

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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 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 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!

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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.

 

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Friends without Autism – and That’s Okay!

Friends without Autism - And That's Okay!

Any one who lives with autism has probably made a comment about not having any friends who don’t understand autism.  I do understand that statement – and I’d never consider anyone a friend who was cruel to my kids or anyone else with special needs – but I think, sometimes, we are too hard on those who don’t live with autism.

I’ve written before about a special group of ladies in my life.  I don’t get to see them often (if you think trying to make plans with one person with autism is difficult, try 6 – 8!) but when I do, it’s as if we’ve never been apart.  We do talk about autism and how it affects every single, teenie tiny part of our lives, but that’s not the only thing we talk about.  And sometimes, it’s the not talking about autism that helps as much!

I don’t know about you, but sometimes, I’m tired of autism.  I am in no way saying I’m tired of my kids – I’m saying I’d like to make simple plans – or watch TV without “Long Black Train” being sung in the background – or be able to eat my supper while it’s still mostly warm (I’ve pretty much given up on hot meals!  🙂  ).  I want to talk about anything but autism.  I’m lucky – I have Tracie.  She’s used to the sound effects in my house (even if she giggles while I grumble!  🙂 ) and we can have a long conversation that would probably be boring to anyone but us.

And this brings me to my point.  Thanks to Facebook (if you ignore the drama and trash, it can be a great way to find old friends and stay in touch with far away family!) I’ve been able to reconnect with some women who were a huge part of my life many years ago.  Mandy and their daughters were in Brownies and Girl Scouts together and the group of us moms became friends.  We took the girls places and worked on the PTO together.  And we didn’t talk about autism.

I never hid autism from them, but when I was with them, I could just be Mandy’s mom.  I could be a Brownie mom or a room mother or a PTO volunteer.  I wasn’t trying to handle meltdowns or sensory issues.  I was simply laughing and enjoying being a mom.  After reconnecting on Facebook, I started thinking about how much fun I had during those meetings.

I’m sure there were days these ladies wondered about Casey and Rob – and I’m sure we even talked about it at times, but those moments are not the ones that stand out to me.  What I remember most was the fact that they were so supportive of me and how much they helped me when getting Mandy places was going to be difficult.  She didn’t have to miss anything because I couldn’t find someone to stay with the other kids.

Cathy knew a lot that happened in our house because she and I were close friends before we had kids – she and Tracie were some of the first people I told when Casey got her diagnosis.  And they were both with me as I worried about Mandy and Rob and whether they may eventually be diagnosed, too.  But when we were with this group, autism wasn’t the topic.  Just being a mom was.

Kristi, Rhonda, Cathy, Stacy and others didn’t live with autism.  They didn’t know much about it.   And they were my friends.  Being friends with them allowed me to just be Mandy’s mom and that is one of the most precious gifts they could have given me.  I hope they understood what they did for me so many years ago, but I doubt it.  We were just having fun.

So many people only want friends who understand autism.  I get that.  Life is easier if your friends accept your children.  I’m only saying that it’s okay to have friends who don’t “get” autism.  Let yourself just be you and not an autism mom or dad.  We don’t get many breaks from autism – don’t ignore those chances when they come your way.

I wouldn’t be friends with someone who refused to ever listen to me if I was having a hard time with the kids.  But because someone doesn’t understand autism is not a reason to never be friends with that person.  Some of my closest friends have never met the kids – we were friends as children and now distances keeps us apart.  Just because they don’t know Casey and Rob is no reason to discontinue that friendship!  Many times, during tough days, a text from one of them brightens my day more than they can imagine.

Sometimes, I just don’t want to talk about autism or what affect it has on us.  I just want to grumble about bills or laundry or the never-ending list of things that need done around the house.  I need friends who understand my life – who are a big part of the autism parts, like Tracie – and friends who understand, but don’t live it, like my awesome co-workers.  And I need friends who truly don’t have a clue, but they care about us.

Don’t believe the memes you might see that say only people who understand autism can be your friends!  Yes, they need to have compassion for those with special needs, but they don’t  need to live it.  Let yourself enjoy an “autism-free” hour or two once in a while.  You will be shocked at how much better you will feel.

Hopefully, each of you will have a huge group of autism and non-autism friends – a big group that supports and loves you and your children.  We need friends to call when we need a shoulder to cry on – and when we need to vent – and when we need to try and think through a new plan – and when we just want to talk about the latest episode of The Walking Dead – and a new restaurant we tried.  Don’t limit yourself to people who live with autism – you might miss out on a most amazing friendship.

And don’t forget about online friends.  Sometimes, people you will never meet become close friends, simply because for some people, it’s even easier to be completely open and honest with those who don’t know you.  The fear of judgement is gone and you can just be you.  Message me anytime!  🙂  🙂