Tag: autism families

Posted on

The Time Change, a Full Moon and Crazy Weather – An Autism Perfect Storm

An Autism Perfect Storm

Raise your hand if you know the full moon can do weird things to our kids with autism.  Now raise the other hand if the time change does the same.   And now, raise a foot if the barometer dropping messes them up, too.  And guess what?  I have the perfect storm for autism in my house this weekend!

I dread the time change every fall and spring.  I can’t imagine why anyone thinks messing with the clocks is a good idea but no one asked me.  My kids don’t have as terrible time as some others, but their sleeping/eating will be off for a few days.  And sleepy hungry kids and sleepy mom equals not much fun.  Within a few weeks, we’ll be back to whatever sense of normal we have.

The full moon is another issue.  Anyone who says a full moon doesn’t affect people doesn’t work in a school, hospital, as a first responder or live with someone with autism.  From a few days before the moon is full till a few days after (yeah, about a week!) their behaviors are off.

Rob might be more anxious and loud.  His search for pop tabs and paper clips becomes even more frantic as he tries to deal with the anxiety.  His “Long Black Train” phrase will be really loud and he’ll let out yells that could wake the dead.  (Sorry to our neighbors – I’ve got a few windows cracked between the rain bursts!)  He’ll be looking for stuff to shred and hoping the battery on his iPad lasts a long time.

Casey isn’t loud.  It’s hard to describe what she’s doing.  I’ll call it strenuous dancing.  By that I mean, her pacing figure 8’s in her room has become serious stomps and that girl is moving!  I hope that new carpet holds up as long as the manufacturer assured me it would!  She wants to go to Mandy’s house to Odd Lots to McDonalds to Dollar Tree.  Basically, anywhere but here with me.  She wants Tracie to come.

And now you add in the crazy weather.   Rob is pacing.  He’s been in the dining room 5 or 6 times to look out the window as I write this.  He is tense and humming.  His fairy dances are not as light-footed as usual.  I wish the storm would just get here and be done, but it appears it’s going to come and go all afternoon.

So – an autism perfect storm.  Rob is having a harder time than Casey, but he also recovers faster.  They both slept last night, so that’s a huge bonus and I’ve got my fingers crossed they will crash tonight, too.  We just ate lunch and Casey is already asking for supper.  Luckily, for once, I’ve actually thought ahead and had an answer to “supper?”

I don’t know how to help your little ones through an autism storm like a full moon and a time change.  So many things that cause stress and anxiety can be avoided, but unfortunately, neither of these can be.  Be ready with stress relievers – bouncing, swinging, ripping paper – whatever helps calm your child.

Relax your policy of how long they can watch their favorite movie.  If they are happy, you will be happy.  Pop in that movie and sit back.  These crazy days are not the best time to start teaching a new skill or change the routine anymore than needed.  Do whatever you need to keep things calm.

Stock up on what you need to stay relaxed.  I prefer ice cold coke and perhaps a snickers bar.  A soft blanket and a good book work wonders, too.  I also do yoga and workout as stress relief.  At times, I can get Casey to do yoga, too, and I keep Rob stocked in magazines.

When people tell you that the full moon, weather and time change can’t possibly have the affect you say it does, invite them to take your child for a day.  Or an afternoon.  Even an hour.  I guarantee they won’t say these things have no affect again.  Sometimes, the best way to stop “know it alls” is to show them the error in their thoughts.  Try to hold in the laughter when the kids are returned still going strong and the adult is exhausted.

On a much happier note – Casey  just told me that the time change for next spring will be March 11 and the month has two full moons (EEEEKKK!) but one is the 1st and the other the 31st.  So we have a year before these will happen again.  Good luck and deep breaths!

Posted on

Autism and Halloween – Fun or Too Much Stress?

Autism and Halloween

Halloween is almost here again and Casey has asked several times about trick or treating.  The funny thing is she always answer herself with “Trick or treating is for little kids.”  I know lots of parents of adults with special needs take their kids trick or treating and I think that’s great. For me, autism and Halloween have never been much fun.

I think there was one year that Rob wanted to wear a costume.  He always wore one because his sisters did, but he truly couldn’t have cared less.  Trick or treating wasn’t fun for him – again, he did it because Casey and Mandy did, but he didn’t like being in crowds of people, especially when they were in costumes.  He didn’t like talking to people – “Trick or treat” or “Thank you.”  He didn’t care about the candy.

Casey liked dressing up, but she rarely said what she wanted to be.  She wanted the candy that came from trick or treating.  She didn’t care if she appeared rude as she grabbed candy.  Taking the three kids trick or treating was so stressful for me.  If given the option, I would stay home and pass out candy.

In the last few years, Casey has chosen what she wanted to be.  One year, she was a mermaid – another a unicorn.  This year, she wanted to be Dorothy from the Wizard of Oz.  This completely shocked me because that movie was never her favorite.  Mandy and Rob were obsessed with it – Rob still is.

Mandy and I decided if she wanted to be Dorothy, we would all be Wizard of Oz characters and go to the County Board of DD dance together.   Casey and Rob love the dances and I’m so thankful our county holds dances several times a year.

We really weren’t sure Rob would get into the whole costume thing.  I talked to him about it and asked who he wanted to be.  He wouldn’t answer, so Mandy decided to be the Cowardly Lion and I would be the Scarecrow.  Rob loves wearing hats, so we thought we would get a funnel for him and be happy with that.

My dad actually made a neat funnel hat for Rob and he was thrilled with it.  He couldn’t stop giggling when he saw it and tried to wear it over his headphones.  We talked about the dance for a week or so and I kept telling him he could be the Tin Man.  He just laughed.

The night of the dance, I hoped he would wear a gray shirt, but knew the chances weren’t great.  I cut out a heart for him and made an axe.  When he saw us getting ready, he jumped up and put his shoes on.  I asked him to please wear a gray shirt – and he immediately pulled off the red shirt he was wearing.  I put his t-shirt on inside out to cover the logo a little – and he left it that way!

He even asked to paint his face!  (Mandy had painted a lion face on herself and given Casey a little make up)  I never dreamed he would sit long enough, but he let me paint his face and asked for his arms to be gray, too.  I told him we’d better not paint his arms and he was ok.  He grabbed his axe and put his hat on and was ready to go.  (A word of caution – paint and beards do not go well together.  I never thought about that.  His beard was like a brillo pad and he was not a happy guy as we tried to get the paint out later!)

We posed for pictures and headed to the dance.  We got several compliments about our outfits and Casey took off dancing after tossing her basket and Toto at Mandy.  Rob climbed to the top of the bleachers in his usual place.  Casey danced her figure 8’s around the floor and he watched the flashing spinning lights.

Soon, he got up and actually danced with me!  He asked for “The Twist” but he was willing to dance to other music.  He has his own style of dancing, but I was so excited to see him willing to try something new!  Casey even slowed her dancing ( I use that term loosely – she tends to gallop back and forth and jump up and down) to dance with Mandy.   We had so much fun dancing together – and his hat stayed right on his head.  He was so proud of it.

I know how hard holidays can be for your little ones with autism.  I don’t miss the stress of trick or treating at all.  I don’t miss Halloween parties that I didn’t enjoy because Casey and Rob didn’t.  I don’t miss struggling to find ways for them to enjoy Halloween, too.  But, I have learned that just because something has “always been done this way” means it can’t be done differently.

We make our own traditions – ones that we can all enjoy together.  I remember the first year that all three kids carved their own pumpkins and how proud Casey and Rob were. (For the next several years, their pumpkins always looked exactly the same.)  Last year was the first time Casey didn’t ask to carve a pumpkin.  She hasn’t mentioned it yet this year.  I can’t decide whether to be happy to avoid the mess or sad that she is growing up.

There is more awareness of autism now than when my kids were little.  Hopefully, you won’t meet as many people who make nasty comments about your child’s lack of communication or the fact they aren’t wearing a “real” costume or are trying to grab too many pieces of candy.  If you do meet any, educate them, if possible.  Ignore them otherwise.  Some people will never be aware of the needs of others.  Don’t let them ruin your fun.

Dress your little one in whatever they can handle.  If it’s not a “real” costume, who cares?  Your goal is to help them have a night of fun – not to worry about the ignorance of others.  If your child is non-verbal, print a card that says “Trick or treat” on one side and “Thank you” on the other.  You can easily help them flash the words to people.

If your child only wants to go to one house, visit one and go home.  No one needs that much candy, anyway, and you’ll hopefully prevent a meltdown from sensory overload.  You may have to adjust your expectations to fit your child and that’s ok.  You can’t force your child to enjoy something and the possibility of a meltdown just isn’t worth it.

Adapt your plans as you need to.  Do what your child needs to do.  Ignore the people who have opinions on how they would handle Halloween – they are not experts on your child like you are.  I hope that your Halloween is a fun and happy time for you and your family.  I’m still so excited that Rob joined in this year and am hoping you have a wonderful time, too!

 

Posted on

How to Keep Friends Close when Autism is Your Life

How to Keep Friends Close when Autism is your Llife

This week seemed to be the week of missing friends – both in my life and in discussions I’ve had with other autism parents.  I have read stories on several autism Facebook pages I follow about missing friends and losing friends because autism is taking over their life.

I wish I could say this never happens.  But, it does.  Maybe a friend doesn’t know what to do around your child.  Maybe they get tired of listening to you talk about the issues that surround autism.  Maybe they just don’t know what to say or do when you are crying.  Maybe it was just time for that friendship to fade away.

I don’t think I’ve ever actually “lost” a friend because of autism.  I know I don’t see so many people that I think about often and I miss talking and laughing with.  I want to pick up the phone and call, but some nights, I’m just so tired.  It’s too much effort to try. And I feel terrible about that.

I am thankful for Facebook and texting. As impersonal as they may be, sometimes, that’s all the contact I’m able to do.  I found one of my best friends from my childhood on Facebook and am loving seeing Terri’s life in pictures.  A quick message from her is enough to brighten my day.

Other friends will send me texts, just to say hi or to check on us.  We may text a few times over the course of a day, but again, those texts bring a smile and often laughter.  I have amazing friends who know just what to say to make me laugh.  It may be weeks between times we talk, but I know how busy we all are.

But I feel guilty that I don’t see them more – or that I don’t pick up the phone to call.  Of course, some nights, calling anyone would treat them to an earful of whatever Rob’s phrase is for the evening.  Lately, it’s been “long black train” – only he draws it out into a long sentence and in a loud voice.  It wouldn’t be the relaxing phone conversation I want!

The funny thing is, even if I think I have no energy for a phone call, I feel so much better after talking to my friends.  Even if it’s just for a few minutes and all we talk about is stuff no one really cares about – just hearing a friendly voice is enough to brighten my day.

So here is my advice to you.  If you are having a bad day, call your best friend or send a text.  You don’t have to talk a long time or even about the stress of your day.  Let them vent to you and help you think about something besides autism or meltdowns or sensory issues.  Let them pull you out of the little box we all seem to live in.

Because autism can be a lonely life for parents.  We worry about our kids having friends, but what about us?  We need those friendships, too – probably even more than some of our kids.  We live our lives according to our kids schedules, no matter how hard we try to pull them into new experiences with us.

But – you know what?  We don’t have to have only friends who know autism.  Doesn’t everyone have friends that they only do certain things with?  Maybe you have a friend that you share a love of scary books with and you talk for hours about the latest Stephen King book or movie.  Maybe you have a friend who loves football as much as you and that’s your only connection.  Or co-workers that you can have a drink with.

My point is – don’t ignore the people who don’t know or understand autism.  Keep enjoying whatever it is that brought you together in the first place.  It’s ok to not think about autism every minute and that’s hard when you are only around people who live autism, too.

I have friends who have never met Casey and Rob and that’s ok.  They may not understand how different my life is at times but they are still loving, caring friends.  The only reason they don’t know my kids is the distances between where we live.  When I do get to make plans with them – finally – the last thing I want to do is take Casey and Rob, too.  I want a relaxing night of good food and lots of laughs.

You may think that people should know how busy you are and that they should make an effort to stay in your life.  But, maybe they are afraid they will catch you at a bad time if they call – or maybe, they are struggling with problems you don’t know anything about.  Don’t lose a friend over a misunderstanding.  Make a quick call and see what happens.  Send a card or write an email in the middle of the night while you watch your child bounce around the room.

You may not be able to go places with your friends easily.  Why not invite them to your house?  Plan a day of crafting or movies.  Have everyone bring a dessert and share.  While it may not be quiet in your house and a naked child may appear at any time, you will be with your friends.  They love you and – if you are comfortable inviting them to your home – they must know your kids.  Autism is nothing to be ashamed of – laugh it up!

We have to think outside the box when making plans for our kids, so why not do the same when trying to keep friends close?  No one ever said a weekly lunch date is a requirement for friendship or an hours long phone call.  Tracie has gone with me when I take the kids places – even just for a walk.  We chat while the kids run ahead.

Or we catch up in the car on the way to doctor appointments.  Invite a friend to go to the park with you.  One of my cousins and I use messenger to “chat” while we watch the same movie on TV.  Keeping the people you need close is hard, even without autism.  Busy schedules are difficult to co-ordinate.  And the guilt you may feel for not being there for your friends can eat away at you.

Let it go.  Just like I’ve told you before to let the dusting wait or the laundry waiting to be folded.  Sometimes, your kids need you  more than your friends do.  Your true friends will understand that.  Don’t let others lay more guilt on you.  Let it go.

For my friends, both near and far – ones I’ve known forever and ones I’ve never met – thank you.  Know I think of you and our fun times often and love you all!

 

 

 

 

 

 

Posted on

Is a Healthy Diet Possible with Autism?

autism picky eating

I had to take the kids to their yearly neurological appointment a few days ago.  As usual, their weight was a concern to the doctor.  It’s a concern for me every day.  For those of you living with picky or compulsive eaters, you know the daily struggle I face.

Both of the kids are on medication that will stimulate their appetite.  While they tolerated this well when they were teens, it seemed that as soon as they graduated, the weight started piling on and now I feel guilty because they have gained so much.

I’m worried about diabetes and their heart health.  I have taken strong measures to make sure food is limited for them, but it’s so hard.  I know Casey is full a long time before she stops eating.  She will stop and take a deep breath and then continue eating.  She will eat until the food is gone.  I don’t know how she doesn’t get sick.

I fix a plate for her with small portions and when she wants seconds, I make that plate, too, with small portions.  Once I put food in the refrigerator, she considers it a leftover and refuses it eat it, so I just put everything away quickly.

Rob knows when he is full and he will stop eating – usually.  If he thinks he can get away with it, he’ll sneak more of his favorites.  He is 5’10” so sneaking is not something he is really good at!  Most of the time, I can tell him he’s finished and he’ll put his plate in the sink and go find something to do.

At this appointment, Rob had lost a few pounds, but Casey gained some.  I am trying to figure out how that is possible.  She won’t eat chips or snacks like that.  Cookies and sweets are limited – if we have them at all.   I don’t let them drink Coke or other soft drinks.  Casey walks miles almost every day at the workshop and we walk as a family several times a week.

I’m sure most of you understand what I’m talking about.  I pack Rob a lunch every day.  He is so picky about what can be in it, that the contents rarely change.  He takes several fresh fruits (but so many fruits are high in sugar!), rice cakes, carrots and a small pack of fruit snacks.  If we have leftovers that he likes (Only meat or potatoes) I pack those, just to be sure he has something to eat during the day.

Sometimes, I’ll pack noodle soup or cereal.  I am constantly trying to think of things he will eat that I can pack easily.  Casey takes a lunch occasionally, but her lunch is easier to pack.  She loves ravioli and other convenience pasta.  I hate packing that, though, because I know how many calories are in those foods.

Unfortunately, as picky as Rob is, the foods he loves are all high in calories.   French fries, chicken nuggets, pizza rolls – all things he would happily eat every single day.   Of course, just because he wants that stuff, doesn’t mean he gets it, but still, it’s hard not to buy when I know he will eat.   I’m curious about what other parents do?  Do you give your child the “junk” food to make sure they eat?

I’m so lucky that Rob is willing to try new foods now, but that doesn’t mean meals aren’t still a struggle at times.  I try to plan so that at least part of the meal is something he likes, but when spaghetti is for supper, I have to think of something else for him.  I refuse to make two meals, so sometimes, he has waffles for supper.  And I feel guilty knowing that isn’t especially healthy for him.

Casey loves vegetables and would happily eat nothing but those for meals.   Rob loves peas and green beans and will eat corn, if it’s just a small helping.  Potatoes are a huge hit, but they have so many carbs in them.  He will eat many types of fresh fruit, so I have always those on hand.  (But – why is the healthy food so much more expensive than the chips and cookies??)

So, my kids have a meaner mom now.  I’m going to get even more strict about what they eat.  We rarely eat fast food, so that’s not a big problem.  Casey is taking a water exercise class twice a week and Rob is doing aquatic therapy.  We’ll try to walk more, but I have no idea what to do when winter hits.  I doubt either will walk on a treadmill.

It’s easier with Rob.  If Casey wants something, she smiles her sweet smile and says “please” and people give in to her when I’m not around to tell her no.  Rob doesn’t do that.  She will sneak food.  He will look to see what he wants, put it away and then ask for it.  If I say he has to wait a while, he’s ok with that.  She is not pleased when she is told to wait.

Eating healthy is hard enough when the family is typical and people are always in a rush.  At least, we aren’t rushed every day, but the kids both eat fast and I know that causes weight gain.  I also learned that not sleeping well can cause weight gain.  Since Rob is sleeping better, maybe that will help him lose a little, too.

I thought about using a fitness app to keep track of their calorie intake, but that seems nearly impossible when they can’t tell me what they ate during the day.  So, I’m determined to prove that eating healthy can happen with people with autism.  They won’t be happy, but the limits are being set.

Protein won’t be an issue for either one, nor will eating fruits and vegetables.  Grains will be tough, as they only eat buns with sandwiches.  Cutting out the convenience foods will be the hardest.  I’d love to hear how you did it with your child with autism.

Their doctor said that being more active is what they need.  (really – you think?)  They both love to walk, but we need stuff for rainy days.  Any ideas?  and it has to be fun or something I can do one on one.  Neither is coordinated enough for jump rope or anything like that.  I have a small trampoline they might try.

So – do you worry about healthy eating with your child or are you just too tired to worry about it?  (And believe me, I get that!)   What do you do to stay active?  I know for many of our kids, being overly active is a problem.  Do you try to do something with your child to burn off that energy or just let them run as needed?

Thank you!  Healthy eating!

 

 

Posted on

Autism, Sensory Issues and Fun

Autism, Sensory Issues and Fun

In our house, the last weekend of September/first weekend of October is a time to be thought of all year.  That’s the week that the fair comes to town with all of the spinning, dropping, swooping rides that Casey and Rob just adore.  Their autism sensory issues enjoy the most amazing times on those rides.

Rob loves anything that will swing him.  His absolute favorite is a giant boat that swings back and forth.  While most people want the end seats so they go higher, Rob doesn’t care.  If the end is open, he’ll sit there, but he’ll take any seat, as long as he gets to swing.  He was on this ride at least eight times this morning.

Another favorite is one that swings side to side.  He giggles as soon as he sees it and smiles through the whole ride, even when it goes high.  It always amazes me that he is scared of heights (won’t even think about riding the Ferris Wheel) but he’ll happily jump on rides that go just as high.

He refuses to go on anything too high.  Or anything that will go upside down.  He likes to go in circles.  Casey will ride anything, at least once.  She has to ride the Ferris Wheel, even though she is terrified of heights because she has rode it every year.  It’s routine and you can’t break routine!

We plan to get to the fair early on Sunday mornings, because there is never a crowd.  The kids can run from ride to ride without stopping.  By the time the crowds come, they are ready for French fries and to head home.  Rob doesn’t like crowds at all and after a few hours, both of them begin “shutting down” because they are over-whelmed.  What was a dream time turns into a difficult situation for them.

The swinging calms Rob down.  I’ve often told our neighbor I was going to buy a huge boat swing for our backyard.  She was completely agreeable, as long as she could ride it, too.  While I am joking about the giant boat, I desperately wish I could find something else that makes him so calm and happy.  He loves his swing, but it can’t swing him as far and as high as he wants.

Many families I’ve talked to don’t go to the fair.  The noises, the lights, the spinning, the people – it’s just too much for many people with autism sensory issues.  I understand that completely.  While the kids enjoyed the fair when they were younger, it wasn’t nearly as much as now.  Today, they can tell me what they want to ride.  They can tell me when they have had enough.  (usually by asking for fries – that’s always been the last thing we do and as you know, you can never break the routine!)

Casey and Rob rode constantly for a few hours.  I don’t think Rob was completely ready to stop, but when Casey asked for fries for the third time, we knew it was time to go.  I can always tell by the look in their eyes when they are becoming overwhelmed and shutting down.  The happy, sparkles that they start the day with are gone and dull eyes are looking out.  They both withdraw when they are overwhelmed.

When Casey was little, she didn’t give me any warning that she was overwhelmed until the meltdown happened.  She wasn’t able to say she had had enough.  Thankfully, she can now.  Hopefully, your little ones will grow into that skill, too.  Rob never had those meltdowns.  He would just withdraw into himself until he felt better.

I’ve always been willing to leave when the kids let me know it’s time.  It’s hard to do that, sometimes, when it costs so much to go to the fair, but at the same time, we have beautiful memories of a day spent together laughing and having fun.  It’s hard to put a price tag on that, especially since for so many years, Mandy and Cory were far away and not able to go.  Having them all with me today was so special and a day I’ll never forget.

There was one minute today that I felt a little melancholy.  When Casey and Rob are at the fair, someone is with them all the time, except when they are riding. (I watch them get on and then go to the exit and wait – it’s awesome to be able to do this!)  I saw some women sitting on a bench, enjoying each other’s company while their kids ran around the rides.  For just a second, I wondered what it would be like to come to the fair and be that relaxed.

It’s not that I was jealous.  More that I was curious about a life like that.  But, as Cory pointed out, I could do that, if I wanted to – just go to the fair without the kids sometime.  He was grinning and I had to laugh, but he’s right.  I may wonder about the lives of others, but in reality, they have problems, too.  Maybe not the same issues that we have as a family, but something.

I hope that each of you can find ways to enjoy family time together.  It’s never easy (But I doubt it’s all that easy for “typical” families, either!) but go for it!  Stay a few minutes.  Leave when you want.  It won’t work out all the time, but when it does, you will feel like I do, right now.  Happy, relaxed and so blessed to have the kids that God gave me.

Posted on

Autism and Respect for Others

Autism Respect

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Posted on

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

Autism mom is Tired

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Posted on

Autism and Celebrating Another Birthday

Autism and Birthdays

It’s hard for me to believe that tomorrow, my “baby” will be 25!   Unlike Casey, Rob doesn’t seem to care about his birthday.  When asked what he wants, his answer is always “presents.”  Trying to ask for specific things, all the while trying to use a statement (tell me what you want) instead of a question is difficult for both of us.  But, that doesn’t matter because it will his day and I’ll do everything I can to make sure he knows how special he is.

When I think back to when the kids were little, it’s amazing to me just how different they were.  It seems I should have seen the autism in Rob earlier.  I was concerned and even talked to Casey’s neurologist and our family doctor about him.  They both agreed with his history, I needed to wait before I panicked.

For the first three years of his life, Rob managed to end up in the ER every six months or so.  As soon as I would get a bill paid off, he would end up there again.  He tumbled as a toddler and split his forehead open – stitches.  He had pneumonia. He fell down the basement steps and got to ride on a helicopter to a children’s hospital (he wouldn’t wake up).  He had a seizure after getting a set of vaccinations.  He jumped down the steps and broke his collar bone.  Need I go on?   I often said that had he been first, there wouldn’t have been another.

So, when he didn’t talk much, no one was very concerned.  He didn’t have routines that he needed to follow.  He didn’t have sensory issues when he was a toddler.  However, since he was language delayed, our school district put him in their preschool when he was 3.  It was the same one both girls had gone to and he was so proud to be there.  He played beside other kids, but rarely played with them.

But, he followed Mandy everywhere at home.  She would tell me what he wanted, so he never needed to use his voice.  She was the ultimate big sister to him and he still leans on her.  The years she was in Texas were especially hard on him.  Casey knew Mandy would come home and would watch the calendar for those dates.  He just knew she was gone.

Since he didn’t show many signs of autism, we waited.  He was going to preschool and getting speech.  There wasn’t much I would have done differently had he had a diagnosis.  When it was time for Kindergarten, though, the signs were becoming more obvious.  He went to our county board of DD Kindergarten and had a one on one aide that he adored.  I also made an appointment with the neurologist for him.  It didn’t take the doctor long to agree that he had autism, too.

I wasn’t surprised.  I didn’t feel much of anything, really.  It was what it was and a diagnosis didn’t change any of us.   It wasn’t till a few days later when Casey had one of her hours long meltdowns that it occurred to me he may start doing that, too.  And I cried.  I wasn’t strong enough to handle two screaming, kicking kids.

God was watching over me.  While Rob does have his issues, meltdowns have never been one of them.  He rarely gets angry and when he does, he tends to cry (like his mom!).   Rob was happy to go to school with Casey and his teachers were awesome with him.  His aide, Beth, went with him and stayed with him through elementary school.  He still talks about “My Beth” – that’s what he always called her.

Sensory issues were Rob’s biggest obstacle.  He hated most shirts, but jeans and tennis shoes were no problem.  He wore a hat everywhere he went.  He had hunter ear protection that he wore through his school day to add pressure to his head and block unexpected loud noises.  He had a huge platform swing in his classroom that he used all of the time.  Beth discovered while he was laying in his swing, he could spell and read and recite math facts much easier.

When he became stressed, he squeezed his jaw or flapped at his ears.  He still does the flapping, but now it’s by his jaw and it doesn’t happen often.  In some ways, his sensory issues have gotten better.  He is willing to try new foods, new places and new clothes, for short periods of times.  In others, it’s become harder for him.  Crowds bother him more.  Being hot is extremely uncomfortable.

Rob is a grown man now, but that little boy is still inside him.  He still loves Dr. Seuss and his Power Rangers.  Willy Wonka and The Wizard of Oz will always stop him in his tracks.  He still builds trees and power poles with his Legos.  “Where did Robbie go?” will always get a smile and giggle from him.  He is still Mom’s boy and still leans on Mandy.

He doesn’t like to get dirty like he used to.  He hates anything gooey on his hands.  He doesn’t like to wear jeans (though part of that is trying to find a pair that fits well!) and doesn’t always have a hat on.  His interests are not those of a grownup, but he is a happy guy.

To him, the best part of his birthday will be that Grandma Rose and Grandpa Mack, Mandy and Cory will be here and we will have Long John Silver’s for supper.  He’ll grin as we sing to him and blow out his candles.  He’ll open presents and say thank you.  And then he’ll be done with being the center of attention and disappear into his room.

I know many of your reading this have little ones.  I know you have days when you wonder how you can keep going because you are so darn tired.  I had those days and I can tell you, it does get easier.  It may not be a perfect life, but no one has that.  You will always have hard times, but you are strong enough to handle it.

I didn’t always believe in myself, but we are making it, day  by day.  I can sit and remember how far the kids have come and some day, you will do that same.  Your journey won’t look like ours at all, but it will still be a good one.  The ups and downs average out – even when the downs seem to never end.  Always believe in yourself and your child.

As for me, I’m going to go wrap Rob’s presents and hope he likes them.  I’m going to look at his scrapbook and know that little boy is still around – as cute and as ornery as ever.  I’ll be grateful he doesn’t climb to the roof and jump anymore and that he finally seems to have a small awareness of danger.  Some day, you will look back and be proud your child has come just as far.

Posted on

Autism Mom Takes a Break – and That’s OK!

Autism Mom

Every year in August, I take a few days and get away from real life.  And every year, I think “why am I doing this?”  It’s such an effort to make plans for the kids and so much worry.  Sometimes, it seems it would be easier to just stay home.  But every autism mom (and dad!) needs to get away from autism for a while.

The crazy thing is – I’m so lucky!  I have plenty of help with the kids.  Their behaviors are minimal and no health concerns.  It should be simple.  It is simple.  And the autism mom guilt hits me.  As I’ve told you before- I absolutely hate to ask for help.  I mentioned that to Tracie and she told me to get over myself.  She’s right.  But still… the guilt lingers.

In all honesty, Casey is thrilled I’m going away.  She loves seeing the schedule for the weekend and she asks for a present (preferably sweet tarts) when I come home.  She uses a calendar and understands when I’ll be back.  In the meantime, she giggles that Tracie is coming!  She laughs about Grandpa and Grandma spending the night here.  She can’t wait to sleep at Mandy and Cory’s house.  And she knows that she can smile her sweet smile and try to get her way, since mean mom is gone.

Rob isn’t as excited.  It used to be really hard on him when I left.  He would say “Mom’s here” every few minutes the entire time.  He wouldn’t look at the schedule and didn’t care who was staying where.  I had disrupted his world and he needed to know when I would be back.  Thankfully, he only asked once or twice while I was gone this time, so things are improving.

When I got to Mandy’s to pick them up, Casey smiled her beautiful smile and came for a hug.  Rob jumped up and yelled “Get da van!”  (yeah, he’s STILL doing it.  Over and over and over.)  Once he was home, he came for a hug.  Few things feel as good as a bear hug from my big guy!  He doesn’t hug easily – and often, he backs up to whoever wants a hug and lets them hug him.  I love that he wants to hug me as much as I want a hug from him.

So I made my schedule.  I packed his lunch for Friday.  I put them on their shuttle Thursday morning and tried not to cry.  I made notes for everyone.  Why, I have no idea, since it is about the same thing every year.  I separated their pills.  I made sure they had plenty of clothes.  Yes – I get obsessive at times.  I just want everything to be fine while I am gone.

The second time I went away for a few days, I made a schedule for the kids.  Every thing they would be doing was on a separate slip of paper so they could pull it off the door as they finished it.  This seemed to really help Casey and she loved pulling the papers off.  I wrote everything down – come home and take your pills, Tracie will take you for supper, take a shower and your pills, etc.  Everything they would be doing was on a slip.  I made a schedule for Tracie, my parents and Mandy that was much simpler – just who would be where when.  They all got copies and I hung one on the pantry door.

The last few years, I haven’t made tiny slips of paper.  I just typed the schedule and printed it and Casey was ok with that.  Rob began to read the schedule.  He may not have been happy with my leaving, but he doesn’t get too stressed about it.  I am assuming every time I leave and disaster doesn’t strike that it will get easier to go.  I doubt it, though.

Part of the problem with this autism mom is that whole asking for help thing.  But another part is just a typical parent. I know Casey and Rob best (though Mandy is pretty darn close!) and I worry.  I want the kids to be able to be with others without problems and I know the only way that will happen is if they are with others.  But I worry.

But I got things ready.  I double-checked plans. I triple checked plans. I packed my clothes.  And I left.

My destination was about 6 hours from home.  Since I was driving, I had plenty of time to wonder what I forgot.  And remind myself that everyone here could handle anything that happened.  I wondered where they would pick to go for supper.  As I drove through the mountains, I thought about how much Casey and Rob loved the mountains and playing in the streams (or watching the water).

Every  parent that leaves thinks about these things, I’m sure.  It’s not an autism mom thing.  But, it is different when your child has special needs.  Especially if there is a medical concern or verbal difficulties.  You need to go, though.  You need to take a break.  I usually leave on Thursday and am back Sunday afternoon.   That’s long enough.

You may not be able to get away for that long, but you do need to get away.  If money is an issue, see if you can visit a friend or family member.  You have got to have time to recharge yourself to be the parent your little one deserves.  They may not understand why you leave, but that’s ok.  They will still love you when you get back.

I know how hard it is to go.  I know that you think no one can care for your child the way you do, but that’s ok.  Part of teaching our kids with autism is to teach them to try new things – to be around new people.  Your child needs that.  They need to know that even if you are gone, they are safe.  You can do this!  Make your schedules, check and double check your lists.  Leave notes everywhere.  And then – GO!

You need time to take a deep breath.  You have to be able to sit and listen to nothing.  I sat in a lounge chair and watched people one afternoon.  My biggest decision was whether to have a candy bar or a cookie.  It was wonderful!  I had a book with me, but never opened it.  I just sat.  And yes, I text home about the kids and was always told how much fun they were having.

Let go of the guilt.  I try, but it usually shows up.  But – I go and I have fun and I know that’s ok.  I am allowed to have a life beyond autism mom.  You are, too!  You deserve time away.  And your child needs it, too.

Posted on

Autism and Sheltered Workshops

Autism and Sheltered Workshops

I just read another post that stated every sheltered workshop and day hab center needs to close and everyone who attends should find a “real” job.  I’m not a happy mom.

I understand the reasoning behind possible laws stating every able-bodied person should be working and earning a minimum wage.  Don’t they think that I would be pushing for that for my kids if I truly believed either one would benefit from it?  Casey and Rob need Hopewell – it really is that simple.  Does everyone that goes there need it?  No, of course not, but everyone has different abilities.  I just don’t understand why that is so hard for some people to understand.

Casey might…  maybe… possibly… be able to go to a “real” job – with supports, for a short amount of time.  If she wants to and is in the right mood and doesn’t decide that going to see Norma (a senior citizen she has developed a special friendship with) would be a better idea.  Casey doesn’t care about money.  She understands she needs money to buy things, but not where money comes from.  (Mom’s purse!  How it got there, she doesn’t know or care.)

Rob could not, at this point in his life, handle a job.  It’s that simple.  He doesn’t like noises, crowds, strange people or a different routine.  His anxiety levels are finally leveling out (and by that, I don’t mean it’s gone – I mean he isn’t humming, flapping, squealing and stealing paper clips all day long!)  He could not do it.   However, if any politician wants to prove me wrong, by all means, message me.  You can take him for a day – or a few hours – or an hour – whatever you can handle.  Ask the people who work with him every day what they think.

Rob doesn’t care about money, either.  The only thing he wants is to have 3 quarters in his pocket every morning when he leaves.  He never spends them, just likes having the ability to buy a pop if the need arises.  He understands that money is needed to buy things, but he doesn’t care where it comes from, either.

I do understand that there are many people out there who desperately want a “real” job and to make their own money.  There are people who need that job to live on their own or help support their families.  For those people, keep fighting!  Demand your services and what you need.  But, please, do not lump my kids into your needs.  We have our own needs.

Sure, it would be great if Casey and Rob were making money and could pay for the things they want or the places they want to go.  Who wouldn’t want a little extra money?  But it isn’t going to happen any time soon.  Maybe in a few years, they will both want jobs and I’ll move mountains to see that they get what they want.  Until then, don’t take away the place we all need.

Neither of the kids have brought home paychecks in months.  But – they are happy!  They are going places with their friends.  Rob is even interested in exploring new places and new experiences.  Casey can volunteer to her heart’s content.  She can have breakfast with the “girls” club (that Rob always seems to invite himself to!) and paint rocks to make others happy.

She can visit the nursing homes and see Norma or play wii or sneak a drink of pop.  They are going swimming with friends.  Rob will be going back to aquatic therapy soon.  All of this and more is available to them because of the workshop they attend.  I couldn’t do it for them.  I can’t take Casey every where she wants to be and leave Rob at home and he doesn’t want to go.  It just doesn’t work.

What about my job?  As much as I wish I was rich, I’m not and a job is a necessity.  If their lose their day hab services, what am I supposed to do?  They can’t be alone and I can’t afford to pay (their waiver will pay for some hours, but not nearly enough).  So where does that leave us?

I do understand what people are saying about minimum wages and the need for people with disabilities to be accepted into our communities.  I fight for that acceptance every day.  What I don’t understand is why it has to be an “all or nothing” situation.  Why do sheltered workshops or day habs have to disappear so people can have jobs?  It just doesn’t make sense to me.

We stress all of the time about looking at a person’s interests and abilities when making a plan for them, but someone who has never met my kids can make a major life decision?  Yes, please, no fanks as Rob says.  We would never take away a person’s therapy or medication without something to replace it – why in the world does taking away their secure, happy place make any sense?

My prayer is that all of the talk floating around is just that – talk.  Rumors or half-truths that have no bearing.  But, I hear about sheltered workshops closing and families being desperate for help.  I know they are expensive to maintain and finding quality staff can be an issue.  Casey and Rob need Hopewell – and so do I.

Keep fighting for what your family member needs.  Never, ever stop doing that – but just keep in mind that our needs are different.  This can’t be a “one size fits all” decision.