Month: October 2017

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

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.

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.