Category: autism parenting

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An Autism Mom’s List of New Year’s Resolutions

Autism Mom's New Year's Resolution

Happy New Year!  I hope each of you had a Merry Christmas!  Now is the time that we all think about what we really want from the coming year and what we would like to change.  Getting organized, getting healthy and saving money are always at the top of most people’s lists and while I think those are all awesome goals, my list looks a little different, thanks to autism.

Resolution #1 – I resolve to ask for help when I need it – hopefully, before I have a meltdown of my own.   Asking for help is not easy for me and I hate doing it.  I know I  need to.  I know life is easier when I have help.  I know I have friends and family that are only a phone call away and who want to help the kids and me.

And I know how much I just hate to do it.  I have never liked asking for help – this isn’t something I learned from autism.  I have no idea why.  Maybe my stubbornness has something to do with it.  I always feel like I should be able to handle anything autism throws at me.  Is that unrealistic?  Of course – and the funny thing is, I know it’s crazy.  So – I’ll do my best, but this will probably be my most difficult resolution.

We all need help at times.  Reach out when you need to!  There are people willing to help you – you just may have to search for them.

Resolution #2 – I resolve to make time for me.   I don’t have to ask for help for this one – I just have to do it.  I need to write more, craft more, read more, yoga more.  I’m really good at taking care of others, but not so good at doing what I want for me.  I’ve been working at this for a few weeks, now, so hopefully, this will be an easy resolution to keep.

You have to do the same thing.  If you don’t have time for you and what you enjoy, you will burn out.  Been there, done that and trust me, it’s not pretty.  You can’t take care of your person with autism if you are burned out.  Helping yourself will help your child, I promise.  Do what you love and I guarantee dealing with autism will be easier.

Resolution #3 – I resolve to thank the people who help with Casey and Rob more.  And to thank the friends and family who send me texts or messages just to say hi and see how we are doing.   I can never tell you how much those quick messages mean to me – bright spots in my day.  I’ve made so many new friends thanks to autism and I hope that my messages to them help, too.  A simple hi or a smiley face can truly brighten someone’s day.

To the people who work with Casey and Rob – thank you!  You don’t have an easy job.  I hope you understand that sometimes, when I am angry, I’m not angry at you – I’m just tired and stressed and don’t want to deal with autism anymore.  Please know that I get tired of hiding paper clips and Q-tips and juice boxes at home, too.

Resolution #4 – I resolve to spread more awareness of autism.   By writing this blog, sharing our circus and keeping up with our Facebook page.  By taking the kids wherever they want to go with whatever supports they need.  By telling those who stare why Casey and Rob are doing what they are doing.  By controlling my temper when the stares are accompanied by rude comments and by losing it when I need to.

We all benefit with more awareness.  It won’t be just our autism families who are helped.  Any family who has someone a little different might find a more accepting world.  A kinder world – isn’t that something we all want?

Resolution #5 – I resolve to follow my own dreams and not let autism take over my life.  This is a little like doing things for myself, but on a much larger scale.  It’s much easier to take five minutes to crochet or meditate than it is to spend hours planning how you can reach for your own dreams.  It’s hard for me to write as much as I would like – real life tends to get in the way at times.  This year, I want to reach for my own dreams and not just push the kids to reach for theirs.

This resolution works whether you have a special needs person in your life or not.  As parents, we always put the kids first.  I’m not saying to ignore your kids, but you do have the right to follow your dreams, too.

So, as we count down the last days of the year, think about what you really want your resolutions to be.  Take small steps and allow yourself to make mistakes – progress is rarely a straight and narrow path.  Just like the progress our kids make – it is often a small step forward, a step back, a step to the right, a step forward.  You can do it!

Happy New Year!  Thank you for following our journey!

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An Autism Mom’s Christmas Wish for You!

An Autism Mom's Christmas Wish for You

Only two more days till Christmas!   My wish list for each of you and your families is below.

  • A few hours of uninterrupted sleep.
  • A child who will wear clothes all day.
  • An understanding family who will have a quiet place for your little one to relax.
  • A meal that has something your child will eat – and if you have to take it, an compassionate hostess that understands your needs.
  • Gifts that your child will enjoy – whether it’s age- appropriate or something odd (like bubble wrap!)
  • A family photo
  • Lots of laughter!
  • A nice afternoon nap – for you and your child!
  • A few minutes for you to breathe deeply and remember just how far your child has come.
  • Strength and patience to not smack people who won’t accept your child.
  • Teachers, therapists, doctors and staff who love your child and are willing to do their best for them.

May each of you find the peace, joy and love that is the true reason for the season.  Merry Christmas to all!

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How to Help Families with Autism Enjoy the Christmas Season

Helping families with Autism Enjoy Christmas

This is such a busy time of year for everyone and, unfortunately, all of the craziness can be especially hard on the families who live with autism every day.  Now is the time for each of us to practice patience and acceptance even more than we usually do.  Here are some ideas to help everyone have a more Merry Christmas.

Please, if you are having a party, do invite the family with autism.  True, they may not come, but just being invited means so much to us!  Life is tough enough without sitting home and knowing that others just don’t want your family at an event.  Invite them – and be ready to accept them into your home!

Be understanding if they bring their own food for their little one.  Picky eaters don’t become “non-picky” just because it’s a party.  Don’t be insulted if they bring snacks – it isn’t meant to be that way.  It just makes having fun easier when they know their child has something to eat.

Perhaps you could light fewer scented candles.  The smells of the party guests (perfumes, colognes, etc) will be strong enough for anyone with a hypersensitive sense of smell.  If you have a place, maybe you could prepare a quiet spot for your guests.  It can be an empty room or just a spot in the corner for them to feel safe.

Speak to the child with autism!  Just say “hi” and smile.  You can’t imagine how happy you will make the parents by simply saying hi.  So many times, our kids aren’t spoken to because they may not answer.  So what?  Say hi anyway.  The child will know you spoke – and may even say a quiet hi back!

If you are buying a gift for the person with autism, talk to the parents first.  An adult with autism may still love child’s toys – like Casey with her Sesame Street friends.  Now isn’t the time to “force” the person to be an adult.  Buy what they like and enjoy the smiles when they open your gift.  As I’ve said before – Casey and Rob are getting some odd things for Christmas (think bubble wrap and children’s toys) but I don’t care.  I can’t wait to see their excitement Christmas morning, after they see what Santa brought.

Be sensitive to a family’s traditions.  Casey still believes in Santa and I don’t want anyone telling her different.  She can’t wait to hear sleigh bells Christmas Eve and pretend to be asleep so Santa will stop at our house.

Be understanding of the over-excited child at a parade or school function.  Most people seem to assume the child is being a “brat” and that parents can’t or won’t control him/her.  You may simply be seeing a child with sensory issues.  And if you do happen to see a child (or adult!) having a meltdown, don’t judge.  Offer the parent a smile and help, but remember, we deal with this every day and don’t be insulted if we decline the offer.

Parents- you know your child best.  I know not to take Rob into crowds for too long or his anxiety will ruin the day for all of us.  He doesn’t enjoy parties and even at our family dinner, he will join us for short periods of time, but he also stretches out in my brother’s old room for some peace and quiet.  And that’s ok.  Casey is always right in the thick of things, but once her plan has been finished (eat then presents) she just sits and watches the silliness.  She will join in games, sometimes, but others, she just watches and laughs.

While Rob is a picky eater, I don’t have to take anything special for him to eat.  He likes ham and rolls, so he nibbles on those and disappears upstairs again.  He likes to open presents, but when he’s done, off he goes again.

If there is something special Casey wants to do, I’ll find someone to take her or someone to stay with Rob so I can take her.  She loves going to see “The Nutcracker” every year when my niece, Anna, is dancing, but Rob won’t even consider it.

I have a hard time with this, but I’ll share my advice with you.  Parents, it’s ok to do things without your child.  I always hate feeling like I’m leaving them out, but it’s ok that I want to enjoy things without worrying about their needs.  Maybe one of your holiday traditions can be a dinner and movie without the kids.  Or just a drive around to see the light displays.  It’s hard to leave them, but it’s ok.

When you are taking your child to a new place, take whatever they might need to enjoy it with you.  Pack a bag of snacks or fidgets or whatever they like.  If they are happy and relaxed, you will all have more fun.  Who cares what others think?  Even parents of “typical” kids are giving them iPads or cell phones to entertain them while waiting – why shouldn’t you do the same?

Expect that your child might be “off” for a few weeks. When Casey was little, December was not a good month at all.  The meltdowns and screams were terrible. It wasn’t until she was older that we discovered why.  She was never sure she had been “good” so Santa would stop.  She knew how upsetting her meltdowns were to me and was worried Santa would think she was bad.  It was heartbreaking for me to discover that.  She was (and still is!) such a literal thinker.  Good or bad – there was no middle ground.

As for us, we are excitedly waiting for Santa to bring some unusual gifts our way.  We are singing Christmas songs and planning a big day of baking soon.  We still have some gifts to finish creating (aren’t those the best kind?) and Christmas movies to watch.  We have Christmas socks (imagine that!) and Christmas shirts (with Rob saying “no fanks, please, mommy Jen”) and are counting the days till we are all together at my parent’s house.

I hope each of you can find the peace and joy of the season amid the chaos of autism.  Enjoy every special moment that is unique to your family!

 

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Autism and Odd, But Fun Christmas Traditions

Autism and Odd, But Fun, Christmas Traditions

Every family has their own traditions for holidays or other special days in the year.  An autism holiday tradition  may not be like other families, but they are what works for us.  Each family needs to find what works for them and makes their family happy.  Who cares if it isn’t something that anyone else would understand?

Our family does have a few traditions, but we are also very good at flying by the seat of our pants at times.  We decorate the weekend after Thanksgiving and the kids help with the trees in their rooms and our “family” tree in the living room.  Each of the kids have gotten special ornaments every year for Christmas so they have big collections.  Looking at that tree is like watching them grow up all over again – from the Baby’s First Christmas ones to the Power Rangers to the Rug Rats to Pooh and Dr. Seuss.

Another tradition is to open presents from each other during the day on Christmas Eve.  I started this when they were little and just couldn’t wait until the next day.   Casey, Rob and Mandy would exchange gifts and it was often enough to keep them busy for a few hours.  I also wanted Casey and Rob to understand that Santa didn’t bring everything.

Santa still comes to our house.  I don’t think Rob ever really believed that a man came into our house on that night, but Casey still firmly believes in Santa and the magic of Christmas.  Thanks to that, the magic will never truly leave our home and I’m so glad for that tradition.   I love watching her eyes when she discovers that Santa came again.

Last year, for the first time, Rob got up in the middle of the night and raided his stocking.  He was always the one who went to sleep and had to be pulled from bed the next morning to open presents.  I can’t wait to see what he does this year.  Casey is always too excited to sleep on Christmas Eve and as a result, after she opens presents, she goes back to bed.  She used to say “Get up in da dark” for days before Christmas, while I reminded her to get up in the light!

Another Christmas Eve tradition for our family is a long drive to look at decorated houses around town.  Casey has already asked about this year and giggled when I told her we would go.  When they were little, I would give them  baths and bundle into new Christmas pajamas before we left, but that doesn’t happen anymore.  They both enjoy the quiet ride to see the lights and it helps relax them before trying to sleep.

Every year, I try to take them somewhere special to see Christmas lights.  Casey still wants to talk to Santa, but I have to be careful as Rob is likely to pull his beard off to see who is really there – or completely ignore him.  He has never been happy to see Santa or sit on his lap.  I may have one picture of him near Santa, but that’s ok.  I know many families really want pictures with Santa but it’s never been a real concern for me.

Last week, we drove to a nearby county to see their decorated courthouse.  I thought Rob might like it, but that it wouldn’t interest him for long.  I knew Casey and Mandy would like it.  I was so surprised!  Rob giggled and laughed the whole time we were there.  I took several pictures of the three of them together and in each they are laughing together.  Seeing that was truly this mom’s Christmas joy!  The only thing that would have made it better was if Cory had been able to be there, too.

Your favorite traditions may have to be altered a little for your family but that’s ok.  If your little one wants a tree decorated with socks (how Casey would love that!) or with blocks, who cares?  Decorate how you want to and enjoy the smiles and giggles.  You may have to hide special items or put them up high to protect them, but that’s ok.  I remember one year that the kids decorated the family tree and all of the ornaments were from their height down.  While I laughed about it and how cute it was, a friend commented that I needed to “fix” it.  Why?  The kids worked hard on it and were so pleased with how it looked.  Why in the world would I want to change that?

Traditions are wonderful additions to family life, but they are supposed to add to the love and fun, not cause more stress.  Stop worrying about what other people might think of pumpkin shaped cookies at Christmas and think about how much fun you had making the cookies with your family.  If church isn’t an option, you can still read the story of Jesus’s birth and play with a nativity set.  We are so used to adapting our lives to autism – I don’t know why so many people forget that at Christmas.

Autism isn’t going to take a break for the holidays (But how cool would that be?  Maybe… or maybe not) so why would you try to force a “normal” Christmas?  And how many families have those perfect holidays, anyway?  Personally, I think “Christmas Vacation” is probably a good idea of how many holidays are – we just don’t inside other houses.  We don’t see how other families have to adjust their ideas also.

The only thing you should worry about is a happy day for your family.  Never compare your holiday to anyone else’s and don’t assume everyone else has it all together.  This time of year is busy for everyone and really, you have the perfect opportunity to find the peace and joy everyone wants at Christmas.

No one expects autism families to attend every event or join in every party.  We have the perfect excuse to say, “No, thank you.  We appreciate the invitation, though.”  We can stay home and create our own traditions.  How about piling blankets in the living room and watching Christmas cartoons together?  Create ornaments every year or take a walk in the snow.  Stop and take  a deep breath.  Find the joy of the season in your own unique ways.  I’d love to hear what traditions your family enjoys!  I’m always looking for new ideas!

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Autism – How to Find the Perfect Christmas Gifts

Autism - How to Find the Perfect Gift

Over the last week, I’ve read several posts by parents or grandparents of people with autism wondering about Christmas gifts for their loved ones.  I’ll admit – I don’t have the perfect answer, as I struggle with Rob every time I want to buy him a gift.

The conversation goes something like this.  “Rob, tell me what you want for Christmas.” “The presents.” “What do you want in the presents?” “A present.” “But, what kind of present?” “A present.” “A CD?” “CD.” “New Legos?” “New Legos.” “Crayons?” “Crayons.”  And on and on.

Casey, on the other hand, has been able to tell me what she wants for several years.  She is a very detailed list maker.  This year, an orange t-shirt, a blue turtleneck, jeans, Elmo book and “da biggest Grover” top her list.  And, she tells everyone different things to be sure she doesn’t get duplicates.  She is a planner, that’s for sure.

So, I struggle with Rob.  I try to think of what he is interested in, but right now, paper clips and cardboard are the top of his list.  He loves the original Mighty Morphin Power Rangers and the Wizard of Oz.  He doesn’t care about clothes (unless I want him to wear new ones!).  Dr. Seuss books are always a hit, but he has his favorites, so why buy more?

He doesn’t watch DVD’s or TV.  He doesn’t listen to CDs anymore, as he uses his iPad.  He plays with Legos and loves small wooden trains.  He doesn’t wear his hats anymore and he has a huge pile of soft blankets.  He collects magazines, but I can’t figure out which ones he will save and which ones he will rip up.

He loves street signs and bubble wrap and popsicle sticks.  He loves McDonalds and fruit and frozen pizza.  I’m sure you are beginning to see my dilemma.  The funny thing is, he loves to open presents.  He used to open one and be done, but now, he rips through them and enjoys it.  So I want him to have things he enjoys in those packages.

Maybe he just likes the surprise of opening the gifts.  I remember one birthday, he shared he wanted Ryan and Kelsey and Kenzie to come over.  Among the gifts were a jar of pickles and a huge pile of crayons and cardboard.  He was the happiest little guy in the world that night.  Ryan’s parents told me they tried to talk Ryan out of buying pickles for Rob, but he giggled when he opened that gift because he was so excited.

One Christmas, he got a Cat in the Hat hat and Hulk hands and insisted on wearing both the rest of the day.  That’s the excitement I want to bring to both of them on Christmas.  Something that will bring smiles and giggles and that they don’t want to put down.

That’s why, a long time ago, I decided that what they liked was what they were going to get, whether it was “age-appropriate” or not.  If Casey wants Sesame Street, she’s going to get Sesame Street.  If Rob wants a toddler train set, that’s exactly what he is going to get.  I’m tired of people saying they don’t think it’s right for adults to play with toys.

I’ve heard parents say they don’t want to feed their child’s obsession with toys.  What about the parent’s hobbies?  How many of them collect things?  Or have a hobby they obsess over?  Golf, TV shows, books.  They enjoy those hobbies, so why can’t our kids just enjoy their hobbies?  Why do people insist on calling their likes “obsessions” and want to change it?  A diagnosis of autism doesn’t change the fact they are a person with their own personality.

Rob got a stop sign and a railroad sign for his birthday.  He was happy to hang them in his room.  His helmet from Halloween has been added to his Wizard of Oz collection.  He may get some odd things for gifts, but he is happy and isn’t that what we want for our kids?

When you shop for gifts for your children, stop worrying about what other people think.  When you buy gifts for “typical” people in your life, you buy what they would enjoy, even if you don’t care for it.  Why can’t buying gifts for your kids be just like that?  If your child loves baby rattles, who is it hurting to give them rattles?  The only thing you should worry about is how hard your child will laugh as they open their gifts.

Sometimes, people with autism don’t care about getting gifts at all and that’s ok.  Buy a few things for them, just in case this is the year they want to join in, but don’t stress over it.  Christmas is a time for peace and joy, not trying to force someone to enjoy an activity.  I know all about the guilt of trying to spend the same amount on each child.   I do, but Rob and Casey’s gifts might seem odd to others.  Again, I don’t care.  I want to see joy on their faces whether it’s a box of paperclips for Rob, the newest Sesame Street toy for Casey, a craft item for Mandy or a car part for Cory.

I don’t know what it is about Christmas and other special days that causes autism parents to stress over things we don’t think about it all any other time of the year.  Maybe it’s that daydream of the perfect holiday and we want everyone to enjoy it like we see in movies.  Perfect holidays are different in every house.  Every family has their own version of happy days.

So, this year, buy the box of paper clips or socks or baby doll or race car your loved one would enjoy and don’t worry about what others think.  Buy (or don’t buy) and let the stress of the perfect Merry Christmas go.  Perfect and normal isn’t nearly as much fun as watching someone’s eyes light up and hearing their giggles as they open their gifts.

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Autism and the “Can’t be Found” Christmas Spirit

Autism and the Can't be Found Christmas Spirit

Last week was not a good one for me.  Several weeks ago, my beloved chocolate lab was diagnosed with lymphoma.  On Monday, I had to say good-bye to Eve.  Many think dogs are just pets, but for me, Eve was the one who helped me through some very dark days and was my strength through tough times with autism.

Casey and Rob didn’t say much about Eve being gone.  After all, she was in Heaven with Bingo and Molly – why should they be sad?  She was happy and pain-free.  So I did my best to hide my tears from them and pretend that I was ok, when inside, all I could do was think about her and how many times she had cuddled me when the world was just too hard.

I love Christmas and all that goes with it.  It is tradition in our house to start decorating for Christmas the day after Thanksgiving.  Since I’ve worked in a school for many years, I usually had a five day break and plenty of time to get started.  I had told Casey that we would put her tree up in her room on that day.

Of course, with her never-forget mind, she reminded me about the tree.  I was tired and really not in the Christmas spirit at all.  I told her she needed to put all of her laundry away before we could put up the tree, thinking she would never actually do it.  She ran to her room and came back giggling about her tree.  I didn’t believe she had cleaned her room, but it was done and her eyes were twinkling with excitement about having a “big” tree in her room.

So, still feeling no Christmas spirit at all, I told her she had to help carry the tree upstairs.  She always says no when I ask her to do something – usually as she is going to do it – but today, as I’m thinking about hitting the chair and curling up with a blanket, she runs to the basement and waits for me to show her which boxes.

It didn’t take long to get the tree set up and she wanted to do everything herself.  I sat on her bed and untangled ornaments for her.  She sang and danced back and forth as she carefully placed ornaments in just the right spot.  Soon, she had me giggling, too, as it was impossible not to laugh at her excitement.

She picked up an ornament she had made in church and talked about Jesus’s birthday and having a cake on Christmas Day.  (She always mentioned everyone in Heaven that would be at Jesus’s real birthday party!)  She laughed when she said “Eve party hat?”  I laughed, too, because Eve never liked things on her head.

In just the few minutes it took her to decorate the tree, she had helped me find my Christmas spirit.  I thought about how Eve loved tearing up wrapping paper every Christmas morning.  She always had presents, too, but she loved waiting for the big pile of paper to dive into.

I sat and watched Casey as she leaned close to the tree and backed away giggling.  I wondered what she saw that made her giggle so much.  I knew she was looking at herself in a blue bulb, so maybe she thought she looked like Cookie Monster.  And I thought about the myth that people with autism don’t feel emotions.

It’s true that we only put up her tree because it was what we were supposed to do on the day after Thanksgiving, but in that half hour, she reminded me that Christmas is a time to feel blessed.  She didn’t have to say many words – she just had to be herself and let her own Christmas spirit shine out.

I feel sorry for the people who don’t really look at our kids – the ones that dismiss them because they have autism.  Too many people believe our kids have no emotions, no dreams, no way to communicate and it’s such a loss for them.  I know how difficult it is sometimes to see beyond meltdowns or sensory issues, but I bet you can see a sparkle in their eyes when they are teasing you.

So, I’m urging each of you to let your child (no matter how old they are!) to lead you to your Christmas spirit when the holiday season becomes too stressful with shopping, finances, extra social activities and everything else we need to do this time of year.  Let them lead you to peace, joy and happiness.

Maybe we should all try to follow their lead.  For the most part, our kids want simple lives – and wouldn’t we be happier if we simplified our lives?

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Autism and Being Thankful for Little Things

Autism and Being Thankful

Thanksgiving is only a few days away and for the last two weeks, Casey has been patiently reciting everything she wants to eat that day – turkey, mashed potatoes, cranberry sauce – and on and on.  When you ask what she is thankful for, she is as likely to say Elmo as family or friends.  And that’s ok.  Sometimes, the things I’m thankful for may not make sense to anyone else, either.

For several years, I was thankful for unlimited texting and minutes on my cell phone.  Mandy and Cory were in Texas and we missed them so much.  It helped Casey and Rob to hear their voices.  Skype was another thing to be thankful for – the pictures of Casey and Rob smiling when they saw Mandy are priceless to me.  The absolute love they have for Cory and Mandy disproves the whole “people with autism don’t feel emotions” stuff.

I am thankful for camp weekends.  I just picked the kids up from Echoing Hills.  They had another great weekend there and enjoyed going to the local Lions Club Minstrel Show (who would have ever imagined Rob would like that?).  When they saw me, they smiled their beautiful smiles and leaned for hugs.  I got tears in my eyes when I saw a volunteer from the camp to go the car and say goodbye to the kids and ask for hugs.  The volunteers and camp employees are blessings to our family – I just hope that they know how much we love them!

I am thankful that, despite terrible meltdowns and way too much head-banging, Casey never got hurt.  She put her head through two glass windows  and never got a scratch.  I am thankful that my “no fears” son never did any permanent damage, despite stitches, broken bones and a helicopter flight to the children’s hospital.  I am also thankful for hair coloring – I am not ready for all those gray hairs to show!

I am thankful for the friends and family who support me and the kids.  Some, I haven’t seen for years and some I’ve never met.  But, thanks to the internet and Facebook, I’ve met people who know exactly what I mean and understand without judging.  I know many families who pull apart when a person has special needs – my family is close and I lean on all of them (and that includes the ones who live far away!)

I am thankful that Mandy doesn’t resent her sister and brother.  Growing up between two siblings with autism wasn’t easy for her, but she is still their biggest defender and one they run to when they need something.

I’m thankful for a best friend who lets me vent, cry on her shoulder or threatens to kick my butt when I need it.  Casey and Rob love spending time with Tracie – and ask for her when mom says no!

I’m thankful for a job and co-workers that support us.  When there is a problem with the kids, I’m able to go deal with it without repercussions at work.  My co-workers know that sometimes, I just need a hug and they are always willing to do that for me.

I am thankful for the day hab where the kids spend their days.  They enjoy being there and have made friends.  I am also thankful for the staff that doesn’t show their frustration with Rob or Casey when they are having a bad time.  (Rob’s obsession with paper clips is also causing my gray hair!)

I am also thankful for Sesame Street, ipads, Mighty Morphin Power Rangers, wind pants and muscle shirts, heavy blankets, head phones, Wizard of Oz, Willy Wonka, legos, color by numbers, cardboard, bubble wrap, slippers, wonderful doctors, coloring books, crayons, clay, socks, ice cold coke, snickers bars, dark chocolate and cheese crackers.  Without these, our days would be very long!

Sometimes, life with autism makes it really hard to find anything to be thankful for.  Between sensory issues, meltdowns, therapies, doctors, school, work and home, sometimes, getting through the day is all you can think of.  Been there, done that.  Sometimes, downing a coke is all that kept me going.  I know it isn’t good for me, but I figure it’s better than other options.

Maybe you can be thankful your child didn’t get hurt during their latest meltdown.  Be grateful for the silence when they finally wear themselves out.  Be thankful that they are willing to eat something – even if it is the same things day after day.  When you are exhausted, look for the smallest things to give you hope and strength to go on.  Be thankful that no matter what, your child loves you more than anything – even if they can’t say the words.  Look in their eyes – you will see it.

One last thing I am very thankful for – for the opportunity to share our lives with each of you.  My greatest hope is that readers can find laughs and hope in our journey- to know that they are not alone and that life does get better.  Only through sharing awareness can we get the acceptance our kids desperately need.

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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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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.