Category: autism acceptance

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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 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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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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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 and Sheltered Workshops

Autism and Sheltered Workshops

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Thank you, Camp Echoing Hills!

Camp Echoing Hills

All is right in this autism mom’s world!  About half an hour ago, the kids got home from a week at  Camp Echoing Hills.  I was so excited all morning – just waiting to go pick them up.

The camp is so organized that when I got there, I could sign the kids out and load all of their stuff before I went to get them.  Each parent (caregiver) is given a paper showing that they signed the person out of camp, so that when I went to get the kids from the Rec hall, the counselors knew who I was there for.  (Like they need it – I think everyone knows me!)

Anyway, Casey and Rob were both sitting on the long porch, waiting.  Casey saw me first and the smile – oh the sweet smile – just  melted my heart.  Her eyes were shining and she jumped up to give me a hug – a real hug and even a kiss (with the mmmooooiii) sound on the cheek.  Rob saw me, then, and came right over.  “You are my friend, Mommy Jen.”  Yes, buddy – always, always your friend!

Rob was ready to bolt (he was hot – too stubborn to go inside when he knew I was on my way) but he did let his cabin counselors give him hugs.  He didn’t hug back, but leaned against them.  What an amazing sight to see!  I hope those young men know how special they are to Rob – he doesn’t like to be close to people, unless he completely trusts them.

The fact that cabin counselors came running to say goodbye to the kids meant the world to me.  I wish I could stand and talk to them – ask questions about the kids’ week.  What did they do?  Did he eat?  Did they sleep?  Did they make friends?  I want to know everything, even though I know that even typical parents don’t hear details about camp.

I did hear how silly Rob was one evening.  I heard that he went swimming as much as he could.  (and I wish so much we still had our pool!)  I heard that he drew faces on the steamed up windows.  I heard he is awesome – cool – so much fun.  And I wanted to cry.  I know all of that – but for strangers to say it… it was just so amazing.  Again, I hope the camp’s counselors (volunteers!) know how much they mean to him – to us.

I heard from both kids that swimming was the best part.  I heard that Casey made new friends – and she, of course, told me their birthdays.  I heard there was a dance with funny music.  I have no idea what that means, but Casey said it was funny.  Something she must not listen to, maybe.  Rob said “Twist” so maybe it was a 50s dance.  He loves to do the Twist.  Casey told me she sang in the talent show – “Jesus Take the Wheel” – and that Rob just watched.

She said she rode go-karts and went fast.  He said “go karts” and “get the van.”  They saw birds and butterflies and they listened to Jesus stories.  They saw a big cross and they watched a fire.  She is already asking when summer camp is next summer.

Of course, as soon as they walked in the door, they dropped 100 pounds of laundry (or so it seems!) and blankets on the kitchen floor.  She took Grover to camp, so she had to run upstairs and see Elmo.  Mandy brought Rob a huge box of magazines so he was immediately in his chair and happily ripping papers.  Life is good.

I wish I could explain to Echoing Hills what the camp means to me.  I missed the kids so much this week, but I had fun, too.  I even took a break from writing – a true vacation for me.   It is an odd feeling.  I went shopping, to the movies, spent an entire evening with Mandy.  I even went for a walk with my best friend, Tracie – a real, spur of the moment, “Let’s do this” walk.  We even sat and talked – almost 2 hours.  What an awesome feeling.  I think I would like that freedom.

I didn’t worry about cooking meals and didn’t have to be home by 3 each day.  There was little laundry to do.  I read a book – scrapbooked and crafted.  The porches got painted.  I could have done that while they were at work, but it was so much easier not trying to get it done before they came home – knowing Rob would walk around barriers and through the wet paint.  (and he would – you are only supposed to come in the front door from work!)

I watched TV and went to bed when I was tired, not when Rob finally went to sleep.  I enjoyed the quiet.  And I wondered what they were doing.  I wondered if the storms hit the camp like at home.  I worried Rob was stressed about the weather.  I wondered if Casey got to go swimming.  I hoped their cabin mates would be friendly.  And I wondered more.

It’s crazy.  You can take the autism out of the house for a week, but you can’t take the autism out of mom.  I knew they were having fun and being well cared for.  I knew they loved going to camp.  (Rob had his shoes on at 10:30 Sunday morning – we don’t leave till 1 for camp)  I was pretty sure they had everything they needed.  But still, it’s impossible for me to stop being mom.

Camp is over for another summer.  We all had fun.  We missed each other.  We belong together – with breaks at times.  They don’t want to be with mom all the time.  They are adults and need freedom.  They need the chance to be themselves without me watching every minute.  I need the chance to be me – not just their mom.

You need those chances, too.  So do your children.  They can’t grow to become the person they need to be if they aren’t given the chance to explore the world.  You will always worry – that can’t be stopped.  You still need to let your kids try new things.  You will be scared and they may be, too, but they need the opportunity.

If they want to learn to dance, find someone to teach them.  If they love to paint, find a teacher.  You will be surprised at how many talented people would love to help teach your child a new skill.  You won’t know until you ask.

As for me, I’m going to tackle laundry and thank God for Camp Echoing Hills – for counselors who see how special my kids are – for a staff that does everything possible for a fun, safe week.  I pray that every counselor and staff person knows that huge difference they make in the lives of the campers and their families.  I want them to know that they are awesome and, while I may not know each of their names, I am so grateful for their dedication and caring for Casey and Rob.  I can never say thank you enough.

 

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Family Dinners and an Autism Mom Worries

Autism Worries

In a few hours, my family, plus my brother’s in-laws, will be gathering to celebrate the birthdays of my two beautiful nieces, Lacey and Anna.  I want to go.  I want to see everyone and I want to have fun.  But, as an autism mom, family dinners are something to be enjoyed – and worried about.

In my head, I know it’s silly to even worry about it.  I know that everyone who will be there loves and understands Casey and Rob.  I know everyone will help me watch them (the party is at a campground and close to a river).  I know that Casey is so excited about celebrating their birthdays she can’t stop giggling about it.  (Casey loves birthdays and firmly believes everyone’s birthday needs to have cake, presents and balloons – whether the birthday person wants them or not.)

Rob isn’t as excited about going.  He’ll go and he’ll be excited to see Uncle Jeff and Grandpa Mack.  But he probably won’t enjoy it like Casey will.  He will be in a strange place, with people he doesn’t know well.  If the campground is busy, there will be lots of strangers around.  He won’t want to eat anything and he won’t want to sit for long.

So, autism mom’s head is racing with crazy thoughts.  Should I take his iPad, even without WiFi?  Don’t forget his spinners and his fidget cube.  Don’t forget chairs.  Will he yell when he is stressed?  Will she try to eat before it’s time?  Will she grab at people’s shoes to see their socks?  Don’t forget their birthday cards.  Maybe I should have asked Tracie to go, just to have someone else.

What’s the weather going to do?  The crazy storms of the last few days have not been good to him.  (and the fact he is STILL asking for the van!)  Will Casey be careful on the playground with smaller children running around?  And on and on and on.   Anyone with a child with autism knows exactly how I’m feeling.  I want to go to the party.  Everyone loves the kids so if they do have issues, it won’t be any big deal.  I want to see everyone and I want to relax.

But… there’s always a “but” isn’t there?  Sometimes, it just seems like too much work to go new places.  I know they need to do it – I know they will probably be fine.  And I know I get so tired of worrying about it.  Sometimes, autism is not my friend.  Sometimes, I just want to toss chairs in the car, grab birthday cards and go.  Especially to a family function – what easier place is there to go than with people who love you?

No place, but sometimes, it’s still hard.  I’m lucky –  my family has always been supportive of the kids.  I’ve never had to deal with family members who say autism isn’t real or that if I spanked them enough, the autism would disappear.  I’ve heard stories from other families.  It’s insane, but true.

If Rob yells, others will help him calm down.  It won’t have to be me.  But I feel guilty and autism guilt sucks worse than plain mom guilt.  If Casey grabs at socks, she will be reminded she needs to ask first.  I may not remind her, but someone will.  They are both loved.

We could stay home tonight.  I could just put my comfy clothes on, pick up my book and kick back.  I could tell Casey the party was canceled.  If I write cancel on her calendar, she’ll be ok with it.  The sky is getting cloudy.  Rob is a little loud.  We’ll just stay home.

But – I miss my brother and want to celebrate with my nieces.  I don’t want autism to rule our lives.  So, we’ll go.  And Casey will grab socks and sneak food.  Rob will rock and squeal.  I’ll sit close and try to relax.  Jeff will tell me to chill out.

Decisions like this may sound silly to anyone who doesn’t have a child with autism, but they are all too real to our family.  Staying home isn’t fair to Casey, but Rob may not enjoy it.  Every day, little decisions that other families make without a thought are major decisions.  Whether to go.  What to eat.  Whether to attempt a trip to the store.  Believe me, I understand your thoughts.

So here is my advice.  Go.  Take whatever you think you may need and ignore people who say you are coddling to your child.  Do what you need.  Take food they like – if the hostess doesn’t like it, too bad.  Take their fidgets.  Take their headphones, security blankets and whatever else they need.  Don’t let what might happen keep you from experiencing life beyond your home.

Really – what’s the worse that can happen?  A meltdown?  Been there, done that – and you know what?  I’m still here.  The kids are still here.  They are happy.  We all survived.  I may have had a crying meltdown when we got home, but no one had to deal with that but me.  Meltdowns may never go away – mine or theirs!

So grab your supports.  Take a deep breath and go.  Experience the world and help your child do the same.  If it doesn’t go well, have a cry and move on.  I need to go pack a big bag of tricks – we’ve got a birthday party to go to!

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Autism and Friendships

Autism and Friendships

Casey was stretched out in the recliner last night and was saying the names of her favorite Sesame Street characters.  Elmo and Cookie Monster topped the list, but she named them all as she giggled about what color each one was.  She really started laughing when I said that Big Bird was purple.  When you have a child with autism, you make jokes however you can!

What caught my attention was that she called Elmo her friend.  She has seen Elmo Live several times and firmly believes they are real people.  She talks to each of her stuffed toys and laughs as she “hears” their answer.  For some reason, I started thinking about friendships and felt sad.  Many times, people with autism tend to have few friends.

Casey has never seemed to care about having friends.  She’s always been “like me or don’t, I don’t care.”  She is who she is and always seems to be happy with herself.  Rob is different.  When he was younger, he wanted everyone to like him.  He wasn’t sure how to make that happen and never seemed to try to form friendships.  He was lucky, though.  There was a group of boys who made sure he was never alone and always had someone to play with.

Those boys stayed with him all the way through school.  He still talks about them.  Now, he has more of Casey’s attitude but he still hates to think anyone is upset with him.  He gets really anxious until he feels they are no longer upset.  I wonder if he misses those boys – or if he thinks they are still at the school, waiting for him.

Every parent wants their children to have friendships.  People that they can play with and do things together.  People with the same interests and that they can laugh with.  When you have a child with autism, it can be so difficult.  We hurt when they aren’t invited to birthday parties or when we can’t have a party for them because it’s not something they would enjoy.

Casey and Rob were lucky.  They had cousins close to their age and Mandy’s friends always included them.  It was only a few weeks ago that Rob named the group of them – Kelsey, Kenzie, Braeden, Ryan, Britanie, Troy and Evan.  He laughed and talked about the pickles that Ryan had gotten him for his birthday one year.  Sidewalk chalk was something Rob loved to do and this group would draw with him as long as he wanted them to.  Whatever Casey wanted to do, they joined in with her as long as she was interested in company.

These kids have grown up, of course, but their friendship meant so much to me, Casey and Rob.  The fact that both kids still talk about them shows how important they were to our family.  They came to birthday parties and played in the pool with them.  Were these “typical” friendships?  Yes – and no.  They reached out to Casey and Rob and were friends to them.  Did they all go do things together?  No, Casey and Rob weren’t able or interested in that.

All of this made me think.  How is friendship defined?  When we think of our friends, we think of people who like the same things we do – people that we want to spend time with – people we can talk to about anything.  If we think of friends like that, Casey and Rob don’t have any.  It makes me so sad to think about that.  They have Mandy and Cory, of course, but still….

But then Casey tells me Elmo is her friend.  And Rob says Bob is his friend.  Tory is someone else they both call “friend.”  A while ago, Rob said Grandpa Mack was his friend.  Tracie, Bud, Amy, Jessica, Adam, Rita, Doug, Scott, Andrew, Tyler, Brandon, Seth – they are all people Casey and Rob say are their friends.  The thing is, only Adam and Tyler are near their age.  Some are staff at the workshop they work at.  Others are a little older than them and they don’t see them away from work.  They haven’t even seen Bud and Amy in years – but still, they are their friends.

They don’t hang out with them.  They don’t have long phone conversations.  But Casey and Rob say they are friends.  They go on outings together.  They go out for breakfast or lunch.  Do they sit and visit for an hour?  No, but they are excited to see each other – isn’t that what real friends do for us?

So maybe it’s my definition of friendship that needs to be changed.  Maybe my vision of the friends I want my kids to have needs adjusted.  I want them to have people in their lives that they can count on.  Someone to have fun with.  Someone to go places with.  After all, how many young adults want to be with mom all the time?

I realized – they have that already.  Rob was excited to tell me he jumped in the pool with Andrew.  Casey giggles when she talks about Adam.  I may not hear a lot of the details, but it’s enough to know they are with friends.  Maybe not the kind of friends I have, but friends none the less.

It’s hard to think your child may be lonely.  For some people with autism, friendships are important and they hurt when they feel as if they don’t have any.  We need to do everything we can to help those people find someone to be their friend.  Their friendship may not be like what we picture a friendship to be, but if your child is happy, isn’t that enough?

If your child wants a friend, invite a child to do an activity with your child that he/she enjoys.  Keep the activity short and see how it goes.  You don’t want your child to become overwhelmed.  Invite the child to ask questions about why your child might do some of the things he/she does.  Talk to your child’s teacher and ask if you can speak to the class when your child isn’t there.  Explain to the kids what autism is and that it is hard for your child to make friends.  Most children want to help others and might be excited to make a new friend.

You may need to redefine your idea of what a friendship is, just like I did.  You may find that your child is perfectly happy to have someone play Legos in the same room without interacting.  Maybe they just want someone to splash around in the pool with.  Watch your child for clues on what they really want.

As for me, I’m going to be thankful for the people my kids consider friends.  I’m going to enjoy every smile and every giggle as they tell me about their adventures in one or two word phrases.  (sometimes, it takes weeks to hear the whole story, but it’s still great to hear!)  I’m going to pray that their friends know how important they are in Casey and Rob’s lives.  And I’m going to pray that they always have people they call friend in their life – even if it is a collection of stuffed toys!