Tag: autism mom

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Autism, Mood Swings and a Helpless Mom

Autism and Mood Swings

I have shared before that when Casey was young, meltdowns were a big part of her life.  She started having them at school long before they occurred at home (probably because demands were placed on her at school and home was her “safe” place).  While we rarely see those hours-long meltdowns anymore, we do still have mood swings once in a while.

I know many people with autism experience mood swings and I wish I knew why.  Anger, tears and happiness all cycle and most of the time, you have no idea why and they can’t tell you.  This happened to Casey the other night.

We had supper and she was fine.  I was having a rough week, so when she flopped down on the couch, I was happy to just chill out, too.  She had her hand over her eyes, so I thought she might have headache.  As bath time approached, she keep peeking at me from under her hand (They always think I’ll forget bath time!) and giggling.  (I’m not nearly as crazy as they think I am – I do remember baths!)

So I told her to go start her bath water, she said “no” like she always does as she jumped up to get her PJs.  I heard her giggle as she ran to her room and back to the bathroom.  A few seconds later, the screams started.  I mean screams that, unless you have heard, you can’t imagine.  I don’t know why it doesn’t hurt her throat to scream like that.  She wasn’t having a meltdown – just a scream every few seconds.

I ran to the bathroom with no clue what was happening. Rob came out of his room, so I knew he had nothing to do with whatever set her off, but he wasn’t helping the situation as he yelled “Casey, no FITS!” and set her off again.  I told him to go in this room and rip paper and shut the door.

By then, she was crying – tears flowing down her cheeks.  I tried to hug her, but hugging is not something she wants unless she initiates it.  She leaned on me for a sec, pushed away and screamed in my face.  And screamed and screamed.  And then she was crying again and leaning on me for a hug.

I kept telling her she was ok and to tell me what was wrong.  I try never to ask the kids questions – they have a hard time processing them.  I say “Tell me what’s wrong” instead of “What’s wrong?”  I told her again as she cried to tell me, but again, she pushed me away and screamed “BATH!”

So I started her water and asked if she wanted Elmo bubble bath.  She said yes and started giggling.  I was desperate to get her mind off whatever was upsetting her so we talked about going to Grandma Rose’s and Grandpa Mack’s house the next evening and seeing Mandy this weekend.  Suddenly – another scream.  (do you have any idea how screams echo in a small, tiled bathroom?)

I sat back and let her scream.  When she calmed down again, I started talking about needing a Christmas list for her and how she could write that when she got out of the bath, if she wanted to.  Yes!  She did and she started giggling again and finally, she started talking a little about Elmo and Christmas.  I took a deep breath and prayed it was over.

She was drying off when the next screams started.  By now, Rob is working himself up to a anxiety attack – humming, pacing, telling her “no fits” (which, by the way, really ticks her off!)  I ran into the other room to get him a pile of magazines and pulled his door shut again.  And now she is standing in the kitchen sobbing her heart out.  I feel so bad – I just can’t figure out what is wrong and I’m almost in tears, too.

We get her pills and orange sherbet.  As she ate her snack, I got Rob’s shower going and waited for more screams.  He was worked up and I had a bad feeling there would be little sleep that night.  He was yelling, even as he took his shower.  I got his pills and snacks ready and sat on the kitchen floor.  My dog came to lean on me and I cried on her shoulder.  Feeling helpless is one of the most terrible feelings in the world.  I couldn’t help either of my kids that night and I knew that Casey wasn’t done, yet.

She was laying on the couch again.  When I went in, she held her hand out and I went to sit beside her.  She asked about her Christmas list and we wrote down several things she wanted.  She was giggling and smiling, but I knew the mood swings weren’t over, yet.  Soon, she threw back her head and screamed again.  She pushed me away and started crying again.

So I sat on the floor about three feet from her and kept begging her to tell me what was wrong or what she needed.  Finally, she jumped up and ran to her room.  I waited for the screams to start again and when I didn’t hear anything for a few minutes, went to check on her.  She was in bed with her blankets over her head and Elmo cuddled against her chest.

I went back downstairs and checked on Rob.  He was just finishing his pile of magazines and seemed happy.  So I went in my room and had a good cry.  Life is just not fair, sometimes.  I hate feeling helpless – especially when I can’t help my own child feel better.  Sometimes, I hate autism and the pain it causes them.  I hate not being able to fix the problem and help them feel happy.

I know you have felt the same way.  Parents of “typical” kids have the same issues, at times, but at least those kids can tell their parents what is wrong.  Casey and Rob have words, when they aren’t too stressed.  When anxiety and stress hit, their words disappear and there isn’t anything I can do but wait it out.

I still don’t know what happened that evening.  She woke up the next day like nothing had happened.  I thanked God we made it through another autism mood swing and prayed He would keep giving me the strength I need.  I guess that’s all any of us can do, isn’t it?

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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!

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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!

 

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Autism, Medication and How to Know What’s Right

Autism medication

A few days ago, I had to pick up prescription refills for Casey and Rob.  As I picked up the bags, the woman behind me made a comment about the number of prescriptions I had picked up.  I was immediately irritated – not just because of her comment, but because she was right behind me, not behind the “privacy” line.

I managed to walk by and only glare at her.  So many words were flying around my head, but I kept my mouth closed.  But, it did remind me of a day a long time ago where a woman decided to tell me how terrible I was to “drug” my kids.

At that time, Casey was on medication, but not Rob.  He was a teen before he needed the help, while she was in elementary school.  Her outbursts were becoming out of control and self-injurious.  Her doctor had given me medication to try as she was getting upset, but she blew up so quickly, I rarely had enough warning to get them into her.

So, after a particularly bad weekend, I called her doctor and basically said, “Drug her or me.  I don’t care which.”  I know it sounds terrible, but I was going on days with no sleep and constant screaming and head banging.  I couldn’t handle it anymore.  I needed sleep – she needed sleep.  We needed to be able to cuddle together.

It wasn’t easy to make that decision.  I had been putting it off for a while, but the breaking point came.  It took a long time to find the right medication for her.  Even now, I dread thinking about making any changes to either of the kids’ medications.  Increasing the amounts can have drastic effects – good or bad – and I’m on edge whenever we need to do that.

It’s hard to tell whether a behavior is getting better because of the medication or maybe something else.  Rob’s anxiety is especially hard to judge because so many things could be causing the anxiety – maybe he was just getting used to them.  It’s a crazy ride – choosing autism medication.

Back to the day I thought about in the store.  I was picking up Casey’s medicine and had all three kids with me.  Casey was trying to get away from me – she was not happy to be in the store.  Mandy was playing peek a boo with Rob to entertain him.  As I turned away from the counter with her medicine, a woman approached me and asked about Casey.

I was honest and told her she had autism, as did my son.  She nodded and I started to turn away.  She shocked me when she said she hoped that medicine wasn’t for Casey.  I just looked at her as she went on to tell me that medicating my child was dangerous and that I had no idea what the side effects or long term damage might be.  (as if I hadn’t considered that!)

I told her as politely as I could that what I did with my child was between me, my child and our doctors.  She then told me that giving her medicine to make my life easier was a terrible way to be mom.  By now, I am livid and praying that I don’t lose my temper in front of the kids and in the middle of the store.  I started walking away and she actually got in front of me.

So I politely told her to get the hell out of my way.  She stood right in front of me, still telling me how terrible it was that I gave Casey “poisons” that could ruin her life.  I pushed my cart right at her and I’m sure my face clearly showed  my anger.  I was ready to hit her with the cart to shut her up.  Luckily, she must have realized she went too far and stepped out of the way.

I still find it unbelievable that people think they have the right to comment on what medications I give the kids.  I discuss medicines at length with their doctor and I do research and talk to pharmacists for their opinion and what to watch for.  I’m not being irresponsible.  I don’t like that they need so much autism medication, but they do.

I’ve wondered whether the kids notice a difference in themselves with their medications.  Last year, I realized that Casey wants hers.  She knows she feels better with it and if I don’t have it ready for her to take, she will ask me for it.  Rob has only recently asked for his.  Whether it is a habit for him or he feels better, I don’t know, but he wants it, too.

If you are trying to decide about autism medications, talk to your child’s doctor.  If you still have questions, ask for a second opinion.  Ask your doctor if they will have someone who uses that medicine to call you (They can’t give you that information as it violates privacy laws, but they can ask someone if they would be willing to talk to you.)

Talk to other parents whose child has autism.  See how they feel about the medications their child is taking.  Ask about side effects (but remember – medicines react differently for everyone, so take all advice with a grain of salt.)

Do your research.  This is a huge decision for you and not an easy one to make.  Maybe you will have a breaking point like I did.  Or you can think of it this way – your child’s brain doesn’t work like a “typical” brain and needs help.  If your child was diabetic, you wouldn’t think twice about giving them insulin.  It’s just something their body needs.

Never feel like a failure for giving your child medication.  By the time you have reached this point, I’m sure you have tried everything else you could think of – just like I did.  Don’t let anyone make you feel guilty for your choices.  Love your child and do what you feel is best for them.  That’s all any of us can do.

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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!

 

 

 

 

 

 

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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!

 

 

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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.

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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!

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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!

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Autism and Your Child’s Safety

Autism and your Child's Safety

I’m sure every one of you has safety precautions in place.  Your doors stay locked for the wandering kids.  Your windows are permanently closed to prevent falls.  Your cupboards are latched, toilets are closed, cleaners locked away.  Your home is as safe as autism will let it be.  But have you thought about your child’s safety in the event of a car accident?  As you travel?  What about a house fire or natural disaster?

Where I live, tornadoes are possible but rare.  I had always wondered if the weather turned terrible at night if I could get both kids to wake up enough to get to the basement with me – and would they stay there?  A few years ago, our summer was one threat of tornado after another and terrible thunderstorms.  The first time the tornado warning sounded, I jumped up and ran to Casey’s room.  She is a deep sleeper – one that rarely moves during the night and the one I was most worried about waking up.

She was sound asleep, but when I ran in and started shaking her, she woke right up and got out of bed.  Mandy was on her way from her room as I walked out of Casey’s and she took Casey and the dogs to the basement as I went to get Rob.  He woke easily, grabbed his blankets and went to the basement with me.   The kids crashed on a mattress as I watched the TV and cried with relief that I would be able to get everyone safe during a weather emergency.

Every time I had to wake them up that summer, they jumped right up.  You need to consider what you will do if your child won’t move fast enough and you can’t carry them.  Make more than one plan in case the first one doesn’t work like you think it will.  Consider purchasing camping lanterns for light as lit candles are too dangerous for our kids.  Make sure you have water and snacks in your safe area.  Think about packing a backpack with medicines and fidgets to help calm your child while you wait for the storm to pass.

In my case, my first plan was to try to wake Casey first, then go to Rob.  If she struggled to wake up, I was going to take him to the basement and turn a power rangers movie on – I knew he wouldn’t leave the movie to come looking for me.  If neither would wake up, I was going to toss water on them.  Yes, I know that sounds mean, but I knew it would wake both of them up enough for me to get them moving.

Being in a car accident is one of my biggest fears.  If I am unable to help them, I don’t think either will try to leave the car.  I desperately hope I am wrong, but I just don’t think they will.  I have stickers on my windshield stating that there are occupants with autism who may not respond as expected.  I have information in the glove box for each of them – contact info, name, address, their diagnosis and what they might possibly do.

My list includes the fact that Rob may run away and that neither understand danger and may wander into traffic.  It says that both have moderate autism and that communication is difficult.  Casey may be jumping and screaming, while Rob may be pacing and yelling.  I want every first responder to know what they may be doing and to not try to touch them.  The kids need to be given space to calm down and for people to use statements such as “Tell me your name” instead of saying “What is your name?”  My lists explain that questions are confusing and that they need time to process the words.

Rob is a big guy.  I don’t want anyone to think he is being aggressive when he is simply overwhelmed, scared and trying to calm down.  Casey’s screaming and jumping is scary to see and if someone tries to touch her, it will only get worse.  First responders need this information.  I’m sure their adrenaline levels are sky high when they respond to emergencies and they need to make split second decisions for their safety and that of my kids.  The more information available to them, the safer we will all be.

As for home safety, Casey and Rob both know they are to leave the house if they hear the smoke detectors.  They are never alone, but I have drilled this into their minds.  They are to leave and go sit in the garage (our garage is unattached) and wait for someone to come.  Will they do it?  I doubt it.  The smoke detectors have gone off and they have no response to them at all.  Again, I have made my plans for leaving the burning house.

In the middle of the night, I will get Rob first, as his room is right beside mine.  Once he is on his way to the garage, I’ll get Casey.  We can get out one of her windows without much of a drop, if needed.  Of course, as soon as I see the danger, I’ll be screaming both kids’ names and hoping they come to me and we can all leave together.  Maybe I overthink things, but I want a plan in place, just in case.

It’s just like learning CPR.  You pray you will never have to use it, but if you do, you want your movements to be instant and not have to stop and think about anything.  Plan ahead – think about all of the ways your children might react (like that’s even possible to do with our kids!) from hiding to running to having a meltdown.  You have to consider how you might move a person that is bigger than you and get them to safety.  Keep a treat they won’t refuse where you can get to it easily and bribe them if necessary (though I like to call this positive reinforcement instead of bribery!).

Contact your local emergency services and see if you can have your phone number highlighted with additional information.  This means that when 911 is dialed from your home, the fact that you have a person with special needs will automatically pop up on the operator’s screen.  Add as much information as possible, such as how your child may be react or how they communicate.  I did this a few years ago with our local 911 system.

A friend of mine at our local board of DD is working on a project for first responders and emergencies with people with special needs.  This could be a great suggestion for your local boards – or something you could work on.  First responders need training in helping our families and this doesn’t always happen, especially in rural areas.

My thoughts and prayers are with the families affected by Harvey, in the path of Irma and near the terrible wildfires out west.  These are terrible situations, but when you have a person with autism, it can be so much harder.  Please say a prayer for them, too.