Category: autism parenting

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30 Years of Autism and Counting – It Does Get Easier!

30 Years of Autism and Counting

My sweet Casey turned 30 last week.  I can’t believe it – but I really can’t believe that we’ve been living with autism for so long and haven’t gone completely insane.

Had anyone known more about autism way back then, she would have been diagnosed at a much younger age.  It’s sad, really.  I can watch the video from her first birthday party and see her completely ignore everyone.  I can hear guests saying how happy she is in her own little world and that she didn’t need any of us.  We might have realized she had autism if more information had been available.

Casey didn’t talk very much.  She could say her ABC’s at 14 months and counted beyond 30 soon after.   She could tell you what shapes were (even obscure ones that I didn’t teach her) and she could do puzzles upside down (meaning the picture was face down – she could still easily fit pieces into the frame.)  She loved colors and named every color in the box. She sang whole songs after hearing them once or twice.  But she couldn’t say she wanted a drink.

To be honest, I wasn’t too worried.  She was my first and the only grandchild on either side of the family, so she spent all of her time with adults.  She never had a chance to mimic other kids – and I didn’t have the chance to see that she wasn’t gaining skills like she should.  She was 3 when it was recommended that we get her tested and start speech therapy.  The doctor’s only concern was her speech, as she wasn’t showing any other signs of autism.  (she was, but I didn’t realize it so I never mentioned it to her doctor).

We took her to a children’s hospital about an hour from our home for testing when she was 3, but for some reason, we never got results from them.  By then, she had started a preschool that clearly was not a match for her and we enrolled her into the preschool our school district offered.  It had special needs and typical kids.  She still had a difficult time, but she had amazing teachers who knew a little about autism and they tried everything they could think of to help her.

She was 4 when she was officially diagnosed.  I read scary books and learned what little there was to learn at the time.  I think that is one of the biggest differences in then and now.  Today – there is information everywhere about autism!  Doctors know what it is and they know the signs to watch for.  There are therapists who are trained to help children with autism.  Schools prepare teachers (sometimes, they have to be told to do so, but IDEA makes sure they don’t argue too much – usually!)  I was also told that the chances of autism were 1 in 10,000.

The latest data I’ve heard is that it’s now 1 in 68 children.  That’s scary to me!  I get asked all the time if I think there is more autism and what is causing it.  I don’t know the answer to either.  I think there are many things causing it – that’s why doctors can’t pin it down.  Maybe it’s allergies to casein or gluten in some people.  Maybe it’s genetics in some cases.  Maybe it’s stomach issues.  Maybe it’s environmental.  I don’t know.  I don’t think about it much as it doesn’t matter to me.

Is there more?  I don’t know that, either.  Sometimes, I think the higher numbers are because doctors know what to look for and are finding even the mildest cases.  Those same mild cases might have just been called eccentric a few years ago.  Again, it doesn’t matter to me.  Should it?  Probably, but I have my hands full right now.  I’m always thinking and planning for the kids – I have little time to think about the why anymore.

The kids have changed so much over the years.  If you would have told me when Casey was 8, 9, 10 years old that she would be going places with friends and volunteering at local organizations, I would have laughed in your face.  At that time, she was spending hours screaming and beating her head into the walls.  She didn’t sleep through the night and if her schedule changed, hell came to our house.

Rob never slept.  He was constantly looking for things to jump off of or into.  He had no sense of danger and darted away from me more times than I care to remember.  He was picky about what he would eat and he saw no reason to talk.  He didn’t have the meltdowns that Casey did and he’s still much more mellow than she is.

Today, he sleeps through the night almost all the time.  He is beginning to try new foods and is willing to go new places, for short periods of time.  She sleeps and loves to go anywhere she can.  She wants new experiences and doesn’t hide from strangers anymore.

Some things haven’t changed, though.  I still have to help with their baths and showers.  I have to monitor their food intake and keep a constant eye on them when we go anywhere.  Neither darts off anymore, but that’s a hard habit to break – and I’m always worried that a stranger might lure them away.  I still worry about their future and I still have to plan most things down to the last details.  And I get tired.  And frustrated at times.  Sometimes, a good cry is the best medicine.

It’s hard to believe autism has been a factor in my life for 30 years.  It’s hard to imagine a life without it.  But, really and truly, I wouldn’t change my life.  God gave me three amazing kids with their own special talents.  Autism made me stronger than I ever dreamed I could be.  It also gave me a reason to use the nasty temper God gave me, too.  (Once I’m pushed too far – watch out!)  I’ve met close friends that I would never have known without autism.

I know you have tough days.  I know you have days that crying is the only thing that helps.  But, I also know that you will have good days, too, sooner or later.  Maybe your good days won’t look like mine and that’s okay.  We all need to take the good we see whenever we see it and enjoy every minute we can!

So – Happy Birthday, Casey-pie!  Here’s to another 30 years of living and laughing with autism!

 

 

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Autism and the Problem with Public Restrooms

Autism and Public Restrooms

Anyone who has a special needs family member probably already knows what this post is going to be about.  It’s an issue we all have to deal with and one that isn’t going to go away anytime soon, most likely.  When my kids were little, it never occurred to be that going to the bathroom was going to be a problem.  Then they grew up.

Rob is claustrophobic and has super sensitive hearing so even when he was little, going to the bathroom anywhere but home or grandma’s house was an issue.  The noise of toilets flushing and electric hand dryers, not to mention the voices that bounced around the small tiled rooms, were enough to convince him to not use the restroom in public – or in school, if he could avoid it.

Casey didn’t have the same problems he did.  She hated the noise, but kept a finger in her most sensitive ear until she could get out of the restroom.  Now that they are both older, the real problem for us is finding a family restroom.

I refuse to let Rob go into a men’s room when there are several stalls.  Not that I would hesitate to barge into a men’s room if I thought he was in trouble, but it’s really not at the top of my list of things I want to do.  I have no idea what kind of person might be in the restroom – and no idea what Rob would do if someone grabbed him.  I would like to think he would beat the crap out of the stranger, but in reality know that Rob wouldn’t do that.

If the men’s room happens to be just the one stall, I let Rob go in, while I stand by the door, holding it open an inch or so, just so I can be sure he doesn’t accidentally lock himself in.  I can hear when he is finished and we go on our way.  Casey can use the restroom on her own and would never dream of going into a men’s room. (Which brings up another pet peeve of mine!  Why do so many restaurants insist on labeling the rooms cutesy names to go with the theme- like hens and roosters?  I worked years to get my kids to understand men and women!)

So – our problem?   Few women give it a thought when they enter a restroom to find a mom and a cute little boy.  When they enter and find a 5’10” 250 pound young man, however, they are not so forgiving.  I don’t blame them, but I do wish they would try to understand before they pass quick and negative judgement.  Do they really think he wants to be in there?  He has no interest in seeing anything – he wants to wash his hands and get out of that noisy place!  Unfortunately, we run into nasty people who can’t seem to keep their comments to themselves.  Trust me, Rob hears everything they are whispering and it hurts his feelings.  I get mad.

We were at their neurologists office a few years ago.  It’s a two hour drive from our house so by the time we get there, everyone needs to use the restroom.  The doctor’s office is in a medical building, so there are people with special needs everywhere.  Rob was still in a stall when a lady walked in.  She smiled at me, ignored Casey and about had an accident in her pants when Rob popped out of the stall.  (Seriously – in the next few minutes I would come to wish she had, just so I could have said something nasty to her.  God forgive me.)

She let out a yell and wanted me to go get security.  I tried to explain he was with me, but she wouldn’t listen.  Her loud words were getting to him and he started rocking and humming.  The louder she got, the louder and faster he stimmed.  So now I was trying to calm him down while she was still yelling and Casey is giggling hysterically because she is nervous and scared.  By now, all I wanted was to get us out of the restroom and back to the doctor’s office.

But she insisted on making comments about my parenting skills, him being in a ladies room and how I couldn’t control either of them.  And Mama Bear came out.

I get it.  You run into a restroom and aren’t thinking about anything but the next thing on your shopping list.  And you run right into a giant young man who is humming and rocking.  He startles you.  But don’t you think there might be a reason he is in there?  Why not take a second and listen to his mom before you get upset?

When my mom and I took the kids to Virginia last year, my biggest worry about the trip was finding a restroom for Rob on the way.  Luckily, most of the rest stops along interstates have family restrooms that Rob can use.  And I made him go to the bathroom when we stopped to eat at restaurants as they often have just one stall.  But, families shouldn’t have to worry about how their children are going to use the restroom!

What if you have an adult who needs changed?  Have you ever seen an area in a store where that can be done? Unless you choose to lay them out on the bathroom floor, you have little choice.  Why can’t family restrooms be more readily available?  A restroom that is big enough for a wheelchair to get into?  I understand this costs money and we’ve come a long way with handicapped areas, but there is still room for improvement.

We need more understanding of young men or women who are in the “wrong” restroom.  Maybe I am just a paranoid mom, but I’m not taking any chances with my kids and I know most people feel the same way.  Rob goes where I go or where I know he is the only person in the restroom.  (Yep – when the door is unlocked, I peek in to be sure before I let him go in.)

OK – my rant is over.  Have any of you ever encountered issues like Rob and I do?  Honestly, most women are kind, but we have scared more than a few little girls and I don’t like doing that.  It’s the cruel and unnecessary comments that put me over the edge.

 

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More Never to be Forgotten Rules for our Autism Home

More Rules for our Autism Family

A few weeks ago, I wrote a post about the unique rules we follow in our house – often without even thinking about them.  Many people enjoyed that post and asked for more, so here we go.

  1. Casey’s feet can never be touching the kitchen floor when the lights get turned on or off.  Seriously, she flies through the room if she thinks someone will flip the switch while she is in there.  And if she is getting a drink from the refrigerator, she’ll hop out of the room if the light gets turned on.  If she has to turn it on herself, she jumps when she turns it on so her feet aren’t touching the floor.  I just asked her why she does that.  (Even though why questions are nearly impossible for her to answer – I thought I’d try!)  Her answer?  “Yes.”
  2. Casey has to hop into buildings.  Truthfully, this is much easier than it used to be!  When she was younger, she jumped through store doors onto one foot, jumped back on the other and then jumped through on both feet.  While this doesn’t sound like any big deal, when you are walking through a crowded door, people are not expecting a child to jump into them from behind or that she will jump back out the door.  I tried pulling her through the doors, but as you can imagine, that was a classic failure!  It got so bad that I either held the kids back from a store door, or sent Mandy in first to keep people back while I guarded the door so no one could get too close as she jumped back.  Thankfully, now, she just does one hop into every store and every house (including ours!).
  3. If something is written on the calendar, it will happen.  One year, Santa brought Casey a calendar that had every holiday imaginable on it – including ones from around the world and religions other than ours.  I, of course, never gave a thought to checking what was printed on the calendar.  Big mistake.  Huge mistake.  Casey decided we had to celebrate everything – Boxing Day, Kwanzaa, Cinco de Mayo, Hanukkah – you get the idea.  Every day seemed to have something on it and she was determined to celebrate them all!  Believe it or not, Santa did the same thing the next Christmas, but got smart enough to open the calendar and black out everything that we didn’t celebrate.  On a brighter not, we learned a lot about other customs that year – I tried to find something simple for each holiday so we could “celebrate” if she was going to have a meltdown over it.  Now, “Cancel” is the best word!!  She completely understands writing cancel on something means it’s not going to happen and while she isn’t always happy about it, she doesn’t get upset.
  4. Windows cannot be left open until Rob deems it’s time. He will shut doors and windows for days before he decides it’s warm enough to leave them open – or I can convince him it’s okay.  His windows are never to be open when he is home.  And he refuses to shower if the window in the bathroom is open.
  5. Casey loves cherry tomatoes and ketchup, but refuses to eat larger tomatoes because they aren’t tomatoes.  (Neither of them generalize well.  Teaching them that beagles and labs are both dogs was a challenge!)
  6. While Rob wears the same clothes all year (wind pants and sleeveless shirts – rarely, if ever, shorts), Casey dresses by the calendar month.  From October 1st – March 1st, she wears two shirts every day – a turtleneck and sweater or sweatshirt.  From March 1st – April 1st, one shirt with long or short sleeves.  May, she can wear capri pants and starting in June, she will wear shorts and t-shirts, until September when it’s time for long pants again.  Now, this sounds like a great idea, but when you live in Ohio, where you can be wearing flip flops one day and snow boots the next (did that a few weeks ago!) she can get really warm or really cold.  But – her schedule can’t be changed.  I’ve tried and then I decided she is old enough to make her own clothing decisions.
  7. Clothing is dirty as soon as it touches your body and cannot be worn again until it’s  be washed.  I mean, if she puts an outfit on and we decide to go somewhere, she will change and throw everything down the laundry chute.  If I’m quick enough (HAHA!) I’ll run down and put those clothes on the dryer so they can just be refolded and stuck in her pile of clean clothes.
  8. Rob has to have the light over the bathroom sink and the kitchen light on before he will take a shower.  The bathroom light, I understand, but no idea about the one in the kitchen.  He’s been doing it for years with no signs of stopping, so I don’t notice it.  I did make the mistake of hitting the switch one evening and turning the kitchen light off – and here comes my dripping wet boy yelling “lights on!” as he slipped and slid from the bathroom to the kitchen to get the light back on.  (Another rule of most autism homes – you never know when a naked or half-naked person may wander through!)
  9. Casey will only drink water from the bathroom sink.  Never, ever will she drink from the kitchen sink.  No idea why or even when she started doing this.  She knows I make their koolaid from the kitchen sink – she has helped me make it before.  But to get a drink, nope – no way!  If she is thirsty and someone is in the bathroom, she’ll stay thirsty instead of using the faucet in the kitchen.
  10. Holidays and birthdays are pretty special in our family.  We have traditions that we love and I truly try to make each of their birthdays as special as they are.  Casey, however, has a hard time relaxing and enjoying the whole day because she has a “schedule” in her head that must be followed.  On a birthday, you get to pick where to have supper, then family comes and you open presents, then you have cake and ice cream.  Until she blows out her candles (we finally got her to agree to a smaller number of candle than her birthday a few years ago!) and has her cake, she doesn’t smile much.  Birthdays are serious business until everything is completed – then you can relax and smile.   Holidays are the same way.  Until the schedule in her mind is complete, she is unable to truly enjoy the day.  I’ve tried explaining to her that we will do everything and she can have fun, but she just can’t stop checking items off from the list in her head.

I hope you got a few giggles from our continued list of rules!  Life is always pretty exciting around here – it keeps me young!  (or at least that’s what I tell myself!)

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Autism and Having Hope – It’s not Only Possible, but Necessary!

Autism and Hope

A few days ago, I posted a meme on our Facebook page about always thinking and worrying about my kids and their future.  It wasn’t meant to be anything other than a reminder to other parents (both of typical kids and special needs kids) that everyone feels the same – a near constant state of worry.

But another mom commented that sometimes, she felt pictures like these could be offensive – that if our kids see them, they may think we aren’t proud of all they have accomplished.   I felt terrible – I never meant for anyone to feel like that about something I chose to share and I told her that.  It also made me think.

When I started this blog and our Facebook page, it was a way to share our lives and spread awareness of autism.  I wanted to make people laugh about the craziness that sometimes comes with autism (and I have another list of “rules” to share soon!) along with letting other parents know that black times do end.  Maybe not as soon as we wish they did, but they do.

I wanted to let parents know that it’s ok to be tired and frustrated and to ask for help.  I have a terrible time with all of this.  I let guilt get to me that I should just let roll off my shoulders.  I’ve been an autism mom for almost 30 years – you would think it would be second nature to me to take things as they come and let little stuff go.  I try, but it isn’t easy.

One of the most important things for all families is hope.  Even when behaviors are occurring constantly and you haven’t slept in weeks, you have to have hope.  Faith and hope will move the mountains in your child’s life.  When you seem to have nothing but tears and anger, dig down deep and find that spark of hope.  Your child’s life depends on your own hope.

You are your child’s best advocate.  Teachers and doctors may have a bunch of letters behind their names, but you are the expert on your child.  YOU!  Only you know what sensory issues may be occurring.  Only you know what sets of tantrums in your child.  You know the dangers your child is unaware of.  Yes, professionals can give you advice, but they have to listen to you first.

You have to show them the hope you have for your child.  You have to share the dreams you have.  Yes, those dreams may have changed a few times, but you still have them.  Maybe your dream that your child will have a job they enjoy – whether that is working in an office or working in a sheltered workshop.

Maybe you dream that your child will be able to live on their own at some point.  Or be able to travel.  You can still dream!  Let your imagination soar and then make a plan to help your child reach that point.  I’ve had to change dreams for my kids several times, but I’ve finally found the perfect dream for all of my kids – happiness.  Yes, I know that sounds simple, but isn’t that what everyone really wants?  A happy life?

My hope is that Casey can continue to find opportunities to explore the community and volunteer.  She loves going new places and trying new things.  (New people, she can do without, but she has learned to handle that, too).  I hope that her life is full of new experiences, adventures and things that make her giggle that amazing giggle of hers.

For Rob, I dream of him always having people around him that accept him for the amazing young man he is.  I hope he can continue to find happiness in watching clouds float by, watching water flow, ripping magazines and building power poles and trees with his Legos.  I want him to always find things that make him smile.

I pray that Mandy and Cory find jobs that always feed their passion for life.  I hope they always look for the good in a person’s heart.  My dream for them is that they always  have faith – in themselves, in each other and in God.  I hope they find laughter in every day and that they share those laughs with others.

We have had black times in our family.  There were many days that I sat and cried – or just sat because I was too tired to cry.  There were screams and broken things and sleepless weeks and constant sameness.  But I always had hope – maybe just a tiny glimmer in my  heart, but it was there.  I prayed and I screamed into my pillow.  And I hugged my kids and told them I loved them more than anything.

I told them how proud I was of them.  It didn’t matter if it was because Rob tried a new food or that Casey got control before she lost her temper or Mandy had an excellent grade card.  I was proud when we made it through the grocery store or when they learned to wash their faces.  I was proud and I dreamed for more.  You have to do that, too.  Always, always dream for more.  Your dreams won’t be the same as mine – or even the same for each child.

You may feel at times that you simply cannot handle autism anymore and that’s okay.  It doesn’t mean that you don’t love your child – it means that sometimes, life is tough – for all parents!  You can be so proud of your child and frustrated at autism.  Your feelings are okay – don’t let anyone tell you different.

Hope can be a hard thing to hold on to, especially with autism.  Everyone feels hopeless at times.  The important thing is that you find that spark in you and let it grow.  Hope and faith (in yourself, in your child, in God) are so important in our lives!

Always reach for your dreams!

 

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Autism, Ear Infection and More Mom Guilt

Autism, Ear Infection and Mom Guilt

It happened again this week – another huge case of autism mom guilt.  And another day that the communication problems that autism causes has hurt one of my kids.

Ever since I was sick a few weeks ago, I’ve been watching the kids closely.  As bad as influenza is going around, I thought there was little chance that one or both of them wouldn’t get it.  But, days passed and they both seemed fine, so I started to worry less.

I was a little concerned about Rob.  He didn’t seem quite like himself, but he never said “hurt” or “Let me see” so I tried not to hover over him too much.  He was eating and sleeping – but his eyes looked funny.  I just had a gut feeling something was up, but he still wouldn’t say anything.

So, I waited.  He went to camp and had a great time.  He came home from the workshop on Monday and said “hurt” and pointed to his ear.  Ok – now we are getting somewhere.  I asked if he needed to see Dr. Myers, but he said “no fanks” and ran back to his room.  If his ear was hurting, it didn’t seem to be bothering him too much.

He didn’t mention his ear again until Thursday.  By then, I knew he was in pain and that it must be bad.  Rob has an extremely high tolerance for pain, so when he finally says something hurts, it’s bad.  Of course, by the time he mentioned it, the doctor was closed for the day and we had to wait.

When he saw the doctor Friday morning, he tipped his head to him (showing him the hurt ear) and said “hurt.”  He had a slight fever and he wanted to sleep.  The doctor said the infection was so bad in that ear that the ear canal was swollen and he couldn’t see the ear drum.  I felt like someone had punched me.

The doctor was concerned his ear drum may have burst.  Rob looked so sad and I was ready to cry.  I truly do know that it’s impossible for me (or any of us) to always knows what’s going on with our non-verbal kids, but the guilt I felt was so strong.  I knew for days something was up with him – why did I wait so long to take him to the doctor?

I have all sorts of excuses.  I thought maybe he had a touch of the flu (my ears hurt terribly!).  He didn’t have a fever (or at least not one high enough I noticed) but his eyes did look off.  He didn’t want to go (when he was little, he saw doctors so often that he cried as soon as we got near an office.  It wasn’t until a few years ago that he and Casey started telling me they needed to see Dr. Myers.) so I thought I’d wait until he told me he needed to go.

None of that matters, though.  The only thing that mattered to me was he was hurting and how to help.  He got meds and ear drops.  I wondered how easily he would let me put drops in the sore ear, but he must have understood when the doctor said they would help because he tilts his head as soon as I mention the drops and he keeps his head tilted for a few minutes to let them get into his ear.

He is taking his medicine without issue.  It’s only been a few days, but I was hoping for more improvement than I’ve seen.  He is talking a little more, but he wants to lay on his bed and not rip paper or play with his iPad.  He hasn’t said anything about his ear.

Truly, I feel like the difficulty we have in communication is the worst part of autism.  The sensory issues are tough at times, but we adapt.  The constant need for the same things in the same way gets old, but we are handling it.  But – when they can’t tell me when they are hurt, it hurts us all.

Even now, he can’t tell me if he is feeling a little better and I can’t tell.  I’m supposed to take him back to the doctor tomorrow if there isn’t any improvement, but how can I tell?  It’s just a guessing game – and this one involves his health and is important.

He has a communication program on his iPad so I tried to get him to answer me with that.  He pushes the off button and covers his head with a blanket.  The last time I went to check on him, he said “Good bye, Mommy Jen”  (translation – get out of my room and leave me alone!)  So I’ll wait and see and hope for a sign that he’s better before tomorrow morning when I have to decide about calling the doctor.

Autism and mom/dad guilt seem to go hand in hand.  I know I feel like I should be able to know everything about the kids – even as my head says that isn’t possible.  My heart argues that a mom who truly knows her kids would know when they are sick or when something is wrong.  I’m tired of the guilt.  I’m tired of trying to out-think autism.

Do me a favor and take my advice.  Do what I’m trying to do today.  Let go of the guilt – it makes you second guess everything until you don’t really know what you are seeing/feeling. Every parent makes mistakes – even the ones whose children are able to communicate.  Don’t let autism make you think that you aren’t an awesome parent, because you are!

 

 

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Autism – High Highs and Low Lows in the Same Day

Autism - Highs and Lows

Anyone who knows autism knows that we can have the highest highs and the lowest lows, often within a few minutes of each other.  I had a day like that last week.

I’ve shared before that Rob is a picky eater.  While he is willing to try many new foods now, he doesn’t voluntarily do it.  On this morning, he was ready for work and looked in the refrigerator.  He grabbed a container of canned pineapple and wanted some.  He loves fresh fruit but refuses to touch anything canned.  I think the syrup is too gooey for him.

Anyway, he was insistent that he wanted the pineapple, so I got a fork, stabbed a piece and handed it to him.  I knew he would refuse to take it, but I was happy he was at least willing to look at it.  To my shock, he grabbed the fork, ate the pineapple and wanted more.  I couldn’t get a bowl for him quick enough!

This mom was over the moon and sky high!  He voluntarily tried a new food – a syrupy food!  If he would have had more time, I would have let him eat the whole container, just to watch him.  I have something else I can pack in his lunch – what an awesome way to start our day!

He had no idea why I was so excited and looked at me like I was  crazy, but he did grin as he left and said “pineapple.”  This was huge and I let everyone know what had happened that morning.

Later that evening, the kids had a dance to go to.  They were both excited.  Casey loves to “dance” while he likes to lay and watch the lights spinning and flashing on the ceiling.  When the music started, we danced “The Twist” together and then Rob and I went to sit while she stood at the edge of the crowd and swayed to the music.

Usually, I try to get Rob to get up and dance more, but I was so tired that night (still trying to get my energy back after being so sick!) that I just sat and watched Casey and the other dancers.

And then it hit me.  This wave of intense sadness.  I saw so many other people her age and they were dancing and laughing with friends – and she was off by herself.  I wanted so badly to see her out in the group, laughing with friends and being silly.  I knew she was happy where she was.  I knew she didn’t care to be in the middle of a crowd.

But it just made me think about all the things that they will probably never do.  Things that I take for granted.  Most days, I don’t think much about it  as I know the kids are happy.  They get to do most of the things they want to do – and what they don’t do is more because mom says no, than their autism.  They go places with friends and staff from  the workshop.

I know all of this, but at that moment, I just wanted to cry.  What if Casey wanted to be in the crowd but didn’t know how?  What if Rob wanted to go sit at a table with the guys and not sit on the bleachers with me?  The thoughts just wouldn’t stop coming.  I just wanted to go home.

These highs and lows are part of what makes autism so exhausting at times.  The range of emotions we feel during the day can swing like a huge pendulum.  Add to that every day concerns about work and groceries and families and household matters.  There are days when I’m so tired when I wake up that I actually think about how long it will be before I can go to bed.

Luckily, most of our days are pretty mellow anymore.  Or, I’ve gotten so used to the circus that I don’t notice the craziness (and this is a distinct possibility!) or the noise.  We don’t have too many super lows (knock on wood!) right now.  I’m always wondering when the next lows will hit, but I try not to think about it too much.  Why ruin a good day by worrying about what might not happen?

I just heard from a mom a few days ago on our Facebook page  (check it out, if you haven’t had a chance, yet.  I try to post every day!) who wanted to thank me for not writing “rainbows and unicorns” about autism.  She liked that I was raw and honest about our lives.  A true high for that day!  When I started this blog and our page, I promised myself that while certain private details about the kids would stay private, I wanted everyone to understand that autism isn’t terrible.

It’s hard and it’s easy some days.  It’s exhausting and exhilarating.  It’s brought so many new friends to our lives and taught me so much.  It makes me laugh and cry and get angry.  When Casey was diagnosed, the books I read were “My child was cured” books or “Your child will never….” books.  Where were the books that said  it was ok for me to be tired?  Where were the parents who got fed up with OCD?  Was I the only one?

So I promise to share our highs and lows with you so you know it’s ok to feel however you feel.  Be happy, be tired, feel guilty, be relieved, be angry, be irritable, be whatever you need to be.  And if you need someone to talk to, message me.

 

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Autism and Our Very Own Personal Rules

Autism and our Very Own Personal Rules

My parents and I were laughing yesterday about the details that are left out of the kids’ ISP’s.  These plans are supposed to make it possible for anyone to come into our home and know what to do with the kids and how to deal with their autism, in the event that someone who knows them is unavailable.

I was actually thinking about this last week as I battled the flu.  As I kept hearing about people being admitted to the hospital with it and my fever kept going higher, I worried about the kids if I had to be gone a few days, unexpectedly.  I know it’s silly, as I have any number of people who would be here to take care of the kids, but still – I wondered.

Their ISP’s are good, but if I had to list everything that people would need to know, the plans would be 100 pages long and still not complete.  I can’t still here right now and think about all the little details that we live by because of the autism, but I thought I’d share a few and see what silly, but so desperately important, rules you live by in your home.

#1.  Waffles are eaten in sets of 5 – 2 for Casey and 3 for Rob.  She refuses to eat more than 2 because there is only room for 2 in the toaster.  He wants 3 because….  well, I have no idea why, but he eats them in 3’s.  And they can’t be cooked – he takes them right from the freezer and eats.  Never add anything to his – only pancakes get syrup!

#2. Casey takes baths and Rob takes showers – and never, ever say the wrong one!  They will both emphatically correct you if you ask Casey to take a shower or Rob to take a bath.  Casey always goes first.  Her hair can only be dried at Grandma and Grandpa’s house, unless she is going somewhere special.  Only then am I allowed to use a hair dryer near her.  Snacks and pills should be waiting as they come out of the bathroom.

#3. Different shaped pretzels of the same brand can’t be eaten.  Rob will eat the nuggets and the long rods of one brand, but only the midgets of another.  And what he eats at home can’t always be eaten at Mandy’s house.

#4.  Casey will not bring her coat from her room until her shoes are on.  She will make 3 or 4 trips up the stairs and never bring her coat until it is time to put it on.  And once she puts it on, she won’t take it off (including hat and gloves) until she leaves.  Even when her ride is running late, she refuses to take it off.  She also has to sit in a certain spot on the love seat to wait till her ride comes.

#5.  Certain clothes have to be worn together.  I’m such a terrible mom that I washed Rob’s wind pants last week and not the t-shirts that have to be worn with them.  Poor guy had a stressful night until his red Coca-Cola shirt got washed the next morning and could be worn with the right pair of black wind pants.

#6.  Rob’s TV can only have HGTV on it.  Even if his favorite movie is on another channel, if you change the channel, he yells and changes it back.

#7. Casey has “after work before bath” slippers, “after bath before bed” slippers, “Saturday afternoon before bath” slippers, “Sunday afternoon before bath” slippers and “snow day” slippers.  Never try to give her the wrong slippers.  And don’t try to understand her system.

#8. She won’t eat leftovers.  Even if the food is still on the kitchen counter, but has been put into containers to be saved, it’s leftover and she won’t touch it.  She remembers what we’ve had to eat, so even if I put leftovers in a pan to warm it up, she refuses to eat it.

#9. When they are going to work in the morning or going with their dad, they have to come and go through the front door.  Any other time, they use the back door.

#10. They both need fans, night lights and a huge pile of blankets to go to sleep at home, but anywhere else, they don’t need it all.

This is just a few of the things we do every day without even thinking about it.  What unwritten autism rules do you have at your house?  I’d love to hear about them!

 

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Once upon a Snowy Evening – Autism and the Internet is Out

Once upon a Snowy Evening - Autism and the Internet is Out

I try not to rely on the internet and the kids being entertained by their iPads.  Most nights, the internet could be gone and no one would be the wiser.  Rob has many apps on his iPad that he uses often, so when he can’t search for Chevy truck parts or whatever has caught his fancy for the day, he’ll just draw or play another app.

Casey, on the other hand, loves You Tube.  And watching music videos.  And when she decides that is what she wants to do, there is little I can do to change her mind.  So, when the internet went out a few evenings ago, I was tense and stressed. She was not pleased.

It was snowing and even though Rob had assured me we were only getting a little bit, he was worried about going to work the next day.  (One day they had to close, we had little snow, but ice)  So he began to get anxious and he paced from his room to the dining room to look out that window. (Yes, his room has windows – and one even faces the same direction, but apparently, when you are checking the weather situation, you can only look out the dining room window that is closest to the kitchen!)

I showed Casey her Elmo apps and crossed my fingers.  She played with them a few minutes and then hit her iPad. “Fix it, mommy!”  “I can’t, Casey – the internet is broke.” “Music, mommy!”  I handed her my phone, but she refused to look at it.  “Why don’t you fold socks, Casey?”  “NO!”  “How about a color by  number?”  “NO!”  She flopped back on the couch and made her mad face.

I gave up trying to write and focused on keeping her calm.  Finally, I thought about my photo boxes.  She has her own set, but looking at my photos is always an exciting event.  Thankfully, she go absorbed in the pictures and the evening passed without much drama.  Rob couldn’t go to sleep, but he wasn’t too loud, so she went to bed as usual.

What really bothered me was the reaction I got from someone else about the evening.  This person isn’t an autism expert by any means, but when I was talking about how worried I was that she was going to have a royal meltdown, the response I got was I needed to tell her I couldn’t fix it and make her understand she can’t always get what she wants.

Really?  Ya think?  (and I’m editing my true thoughts here!) That’s not something I had ever considered doing – thanks so much for the advice.

And, yes, I know I should be more patient with people, but when I’m tired, I just don’t  need advice like that.  I know it was meant to be a helpful solution.  I know not everyone understands autism.  I know autism is confusing to those of us who live with it every day.  But – I seriously did not care at that point.

Casey and Rob have made amazing strides in their abilities.  They have grown and changed so much, but there are simply things that cannot be explained easily.  I remember once the power went out and Rob was insistent that I turn the lights one.  “Lights on!” became his phrase of the night.  Over and over and over until I thought I would lose my mind.

My brother decided to bring a generator to us so Rob would calm down.  He was on his way when Rob got frustrated and hit the light switch in the kitchen – and the lights came on.  Of all the rotten timing!  The look he gave me was priceless – he was sure I had been lying to him all evening.  (trust me – by the time I heard “lights on!” for the 100th time, I would have fixed the electricity myself!)  So now, when the power goes out, Rob flips the kitchen light switch as soon as it goes out.

My point is – there are simply some things  I can’t make the kids understand.  I have tried – many times.  I’m not being a lazy mom.  I know I shouldn’t have gotten irritated by the comment and maybe I wouldn’t have at another time, but I was stressed.  Sometimes, I just have to go with the flow and ignore people.  But – sometimes, I really just want to smack people.  (insert evil giggle here!)

So – lessons I learned from the other night.  Behavior modification (otherwise known as bribery) is perfectly acceptable to keep a meltdown away.  Some people will never “get” it.  Smacking people is never acceptable.  I don’t have to care what anyone else thinks.

Here’s to an endless supply of data and super fast streaming for each of you!

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Autism Mom and her Not so Little Weatherman

Autism Mom and her Not so Little Weatherman

It’s been a long week for us.  The crazy weather started Sunday as Rob’s autism anxiety grew steadily as the day went on.  I knew there was a possibility of a little snow Monday, but he knew better.  He began asking for his workshop about mid-afternoon and had worked himself up to being unable to stop his “storm song” by evening.  I should have known he knew something was coming.

Monday morning, I got up to find Rob already awake and asking for work.  He took his pills and his breakfast back to his room and I turned my phone on to see what was going on.  Luckily, I did this before I woke Casey up – their workshop was closed due to icy roads.  I told him it was closed and he was going to stay home with me that day.  He wasn’t pleased, but seemed more relaxed than he had the day before.

He went back to sleep and was happier when he got up.  He did keep telling me they were going to work Tuesday and I agreed with him that they would be going.  We had a pretty good day with him reminding me many times that he really wanted to go to work the next day.

Late in the day, I heard about another possible storm heading our way.  It wasn’t supposed to reach us till late in the week, so I didn’t think too much about it.  Rob didn’t seem too concerned, so I wasn’t either.  Until Wednesday, when I came home from work.

As I parked in the garage, I already heard his storm song.  I couldn’t believe he was already sensing the storm!  I checked my phone to see if something was closer than I thought, but there was nothing predicted until the end of the week.  The weathermen were predicting rain – or possibly 24″ of snow.  Rob told me snow.  And he continued to sing his storm song.

His song got louder as the evening went on, but he did go to sleep fairly quickly.  Thursday, his storm song was almost constant.  He laughed when I asked if we were going to get rain or a lot of snow.  (He has a very devilish giggle when he thinks I’m being especially goofy!)

Friday, it was still pouring rain, but the storm was coming.  All of the schools in our area were closing early and so was their workshop.  We were safely at home before the ice started, then the snow.  This morning, we had about 6″ of snow at our house, with drifts over a foot deep in some places.  He was right again.

When the kids were little, I had a coat rack in the dining room for their backpacks when they got home from school.  I always knew there was a snow day coming when Rob put his backpack in his room instead of the coat rack.  He was wrong once – school closed because of a flood, not snow.  He is much more reliable than any weatherman.

Rob is happily playing with his Legos now.  No storm songs and no squeals.  Casey is singing and says the snow is all done.  And I’m left wondering again just how sensitive they have to be to know when bad weather is coming.  I can’t imagine being able to feel the barometer dropping, though I suppose many of us do in one way or another.  Whether it’s a sinus headache or achy joints, we feel the changes.

I am so proud of the way the kids handle their sensitivities.  I know he gets loud and she shuts down, but I can’t imagine  what I would do.  When my patience is running out  – when I’ve heard the same darn phrase 100 times in the last ten minutes – I have to keep telling myself that they aren’t trying to annoy me.

They are simply trying to handle a pain that I can’t even imagine.  They are just communicating their needs in a way that I understand.  I have to stay calm or his anxiety will go even higher and he will get louder.  I remind myself that he can’t help it – that they are both coping the best they can, just like the rest of us.

I am constantly amazed that he knows exactly when rain/snow will start.  He walked into the dining room a few minutes ago and looked out the window.  I said that the snow was all done.  He looked at me and laughed – and it was snowing again.  I don’t know how many times he has shut the windows just a minute or two before the rain starts.

Can you imagine being that sensitive to things in our every day life?  To foods or textures or noises or odors?  Can you imagine feeling pain when you have to wear a certain type of clothing?  Or feeling sick when someone tries to force you to eat a gooey food?   It’s no wonder many people with autism hate crowds – imagine the smells and sounds!

My kids are stronger than I am.  The constant assault on my brain/body would be more than I could handle.  I know they don’t understand that not everyone feels/smells/hears like they do.  I’m sure they assume everyone is like them, but I wonder.  Do they ever watch us and wonder  what our lives are like?  Do they wonder why Mandy got to learn to drive and they didn’t?  Or why she lives in another house and they don’t?

For now, I’ll be happy that the storm song is quiet.  And I’ll be ready to listen when he starts singing it again.

 

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Autism Mom Wonders – Is he Hungry or is it OCD?

Is it Hunger or OCD?

Raise your hand if you have ever had a day when you simply couldn’t stop eating.  I know I have them and it’s nearly impossible to control the urge to eat all of the chips and snacks in the pantry.  So, if everyone has them, how do I know if Rob is hungry today or if he’s just obsessing about food because of his autism?

And as I wrote that paragraph, Casey walked in to the room carrying a pack of candy that was on my desk.  Maybe it’s the weather?

We have had an odd week of weather with well below zero wind chills.  Rob hates the wind, but luckily, it was just so cold the wind didn’t have to blow much to drop the temps.  The super moon was earlier in the week, too.  And they were home Monday for New Year’s Day.  So, it’s been an odd week.  But would that drive them to eat so much?

Sure – stress does that to some people.  I tend to avoid eating when I’m stressed, but I know lots of people eat when they are stressed.  Casey will always try to sneak food or drinks, so I’m sure today is just a typical day for her, but what about Rob?

I’m trying so hard to watch what they eat and limit overeating as much as possible.  Exercising isn’t as easy in the winter (though he is going to an indoor track with staff during the day!) so I’m really watching what they eat.  He ate breakfast as usual, but at lunch, he wanted more after he finished.  Later in the afternoon, he asked for his pills early (they have snacks with their pills) and then wanted more after he ate when he usually does.

At supper, it was like he couldn’t get full.  He ate supper, then wanted waffles.  Then fruit, then crackers, then candy.  I gave him a banana and some crackers, then told him no more.   As I was washing dishes, I thought about the days when my appetite seems endless.

So now I’m feeling bad.   What if the storm that’s heading our way is stressing him out (he is a little loud) and his appetite is increased.   Am I making it worse because I’m not letting him eat everything?  Right about now would be a great time for a verbal breakthrough!

I know physically, he can’t possibly be hungry, but still, I feel so guilty telling him no.  Every time he hears someone in the kitchen, he comes running to see what they are doing.  I don’t remember the last time he acted like this – maybe he really is hungry.  I’ve noticed he is losing a little weight – maybe he isn’t eating enough.  How in the world am I supposed to know what is autism and what is being a young man?

So I just offered him carrots and he took them.  He isn’t fixated on a certain food.  Ok – he is hungry.  I think.  He refused the celery, but I’ve never seen him eat that.  I’m going to wait and see what he does, for now.

But this does bring up the hardest part of autism and limited communication.  It is so difficult to know what is really going on with the kids.  When Casey has a meltdown, is she tired?  mad?  hungry?  When Rob is relentlessly looking for paperclips, is he anxious, bored or hungry?

He’s getting louder now. I think the approaching storm is the problem.  So now the question is – do I let him eat everything he wants or keep trying to redirect him?  I think a pile of cardboard would be a great idea right now!  Hopefully, that will help until it’s time for his shower.  He’s been asking about Hopewell tomorrow – I’m a little worried this storm is going to be worse than predicted.

I really hate now knowing what they need or want.  I know how lucky I am that they have any communication at all, but still, it would be so nice if he could just say he’s starving!  Or that he’s anxious or that a huge storm is coming.

How do you handle the communication problems?  Do you ever feel guilty when you don’t give the kids everything they ask for?  Any tips for telling the difference between stress-related eating and obsessive eating?

Stay warm and stay safe everyone!