Category: friendships

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Friends without Autism – and That’s Okay!

Friends without Autism - And That's Okay!

Any one who lives with autism has probably made a comment about not having any friends who don’t understand autism.  I do understand that statement – and I’d never consider anyone a friend who was cruel to my kids or anyone else with special needs – but I think, sometimes, we are too hard on those who don’t live with autism.

I’ve written before about a special group of ladies in my life.  I don’t get to see them often (if you think trying to make plans with one person with autism is difficult, try 6 – 8!) but when I do, it’s as if we’ve never been apart.  We do talk about autism and how it affects every single, teenie tiny part of our lives, but that’s not the only thing we talk about.  And sometimes, it’s the not talking about autism that helps as much!

I don’t know about you, but sometimes, I’m tired of autism.  I am in no way saying I’m tired of my kids – I’m saying I’d like to make simple plans – or watch TV without “Long Black Train” being sung in the background – or be able to eat my supper while it’s still mostly warm (I’ve pretty much given up on hot meals!  🙂  ).  I want to talk about anything but autism.  I’m lucky – I have Tracie.  She’s used to the sound effects in my house (even if she giggles while I grumble!  🙂 ) and we can have a long conversation that would probably be boring to anyone but us.

And this brings me to my point.  Thanks to Facebook (if you ignore the drama and trash, it can be a great way to find old friends and stay in touch with far away family!) I’ve been able to reconnect with some women who were a huge part of my life many years ago.  Mandy and their daughters were in Brownies and Girl Scouts together and the group of us moms became friends.  We took the girls places and worked on the PTO together.  And we didn’t talk about autism.

I never hid autism from them, but when I was with them, I could just be Mandy’s mom.  I could be a Brownie mom or a room mother or a PTO volunteer.  I wasn’t trying to handle meltdowns or sensory issues.  I was simply laughing and enjoying being a mom.  After reconnecting on Facebook, I started thinking about how much fun I had during those meetings.

I’m sure there were days these ladies wondered about Casey and Rob – and I’m sure we even talked about it at times, but those moments are not the ones that stand out to me.  What I remember most was the fact that they were so supportive of me and how much they helped me when getting Mandy places was going to be difficult.  She didn’t have to miss anything because I couldn’t find someone to stay with the other kids.

Cathy knew a lot that happened in our house because she and I were close friends before we had kids – she and Tracie were some of the first people I told when Casey got her diagnosis.  And they were both with me as I worried about Mandy and Rob and whether they may eventually be diagnosed, too.  But when we were with this group, autism wasn’t the topic.  Just being a mom was.

Kristi, Rhonda, Cathy, Stacy and others didn’t live with autism.  They didn’t know much about it.   And they were my friends.  Being friends with them allowed me to just be Mandy’s mom and that is one of the most precious gifts they could have given me.  I hope they understood what they did for me so many years ago, but I doubt it.  We were just having fun.

So many people only want friends who understand autism.  I get that.  Life is easier if your friends accept your children.  I’m only saying that it’s okay to have friends who don’t “get” autism.  Let yourself just be you and not an autism mom or dad.  We don’t get many breaks from autism – don’t ignore those chances when they come your way.

I wouldn’t be friends with someone who refused to ever listen to me if I was having a hard time with the kids.  But because someone doesn’t understand autism is not a reason to never be friends with that person.  Some of my closest friends have never met the kids – we were friends as children and now distances keeps us apart.  Just because they don’t know Casey and Rob is no reason to discontinue that friendship!  Many times, during tough days, a text from one of them brightens my day more than they can imagine.

Sometimes, I just don’t want to talk about autism or what affect it has on us.  I just want to grumble about bills or laundry or the never-ending list of things that need done around the house.  I need friends who understand my life – who are a big part of the autism parts, like Tracie – and friends who understand, but don’t live it, like my awesome co-workers.  And I need friends who truly don’t have a clue, but they care about us.

Don’t believe the memes you might see that say only people who understand autism can be your friends!  Yes, they need to have compassion for those with special needs, but they don’t  need to live it.  Let yourself enjoy an “autism-free” hour or two once in a while.  You will be shocked at how much better you will feel.

Hopefully, each of you will have a huge group of autism and non-autism friends – a big group that supports and loves you and your children.  We need friends to call when we need a shoulder to cry on – and when we need to vent – and when we need to try and think through a new plan – and when we just want to talk about the latest episode of The Walking Dead – and a new restaurant we tried.  Don’t limit yourself to people who live with autism – you might miss out on a most amazing friendship.

And don’t forget about online friends.  Sometimes, people you will never meet become close friends, simply because for some people, it’s even easier to be completely open and honest with those who don’t know you.  The fear of judgement is gone and you can just be you.  Message me anytime!  🙂  🙂

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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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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 a New School Year

Autism and a New School Year

Even though my kids are well beyond school, we still talk about it every August.  Rob wants to be sure he doesn’t have to go back and Casey wants to know how soon she can watch the school bus go by our house again.  A child with autism and a new school year can be so stressful for everyone!

My family was lucky.  With just a few exceptions, Casey and Rob had amazing, wonderful teachers who are still friends today.  These ladies went above and beyond to help them – to learn, to grow, to become the awesome young adults they are today.  Saying thank you will never be enough to any.  I can only hope that the people who helped us will always know how grateful we are.

Letting your little one head off to school is so hard, especially when they have special needs.  You have to wonder if they are happy – safe – hungry – tired – thirsty – you name it.  Can they ask for help?  Will the teacher love them and see how special they are?  At times, it may seem easier to just homeschool and keep your child safely with you.

Believe me, there were years I considered that.  I got so tired of dealing with it all.  Their teachers were so good, but their hands were tied at times.  The government made the rules and even if the rules were stupid, they had to be followed.  So many times, I wanted to be a politician, just so I could have a say in the laws that were made.

The reality was, I knew the kids needed to go to school as much as I needed a break from them.  They needed to be around children their own age and have a chance to make friends, if they wanted them.  Rob had a big group of buddies.  Casey was a loner.  It’s funny, because now, those roles are reversed.  She has the group of friends and he sticks with a few close ones.

There are so many things you can do to help your child’s school year go well!  Communication is so important!  When my kids were little, texting didn’t exist, yet, but each of them had a notebook that went back and forth every day.  Their preschool teachers started this habit and we continued for years.  I love going back and reading them – their entire elementary years are in those books.  Sometimes, it makes me cry.  There were some black times.

Meet your child’s teacher as soon as possible.  Take your child to meet them – or invite the teacher to your home so they can meet in a “safe” place.  Don’t force your little one to spend a lot of time with the teacher – just let them get comfortable.  Trust me, this will make your first days of school much easier.  Set up a way to communicate with the teacher.  Perhaps you could send a quick text if your child didn’t eat or sleep well or if something happened that may affect their day.

For longer concerns, send an email.  But remember that the teacher is busy during the day and don’t get upset if you have to wait till evening or the next day for a response.  Would you rather the teacher answered your email or spend time with your child?  For immediate concerns, call the school.  But make sure it is a true emergency.  Remember – every minute the teacher is dealing with you is a minute they are not with your child.

I’m sure notebooks are a thing of the past for communication, unless your child has a one on one aide who might have time to write each day.  Maybe the teacher could text you a smile for a good day.  It won’t take them long and your mind will be at ease.  You have to discuss these options – or others – with the teacher.  Don’t wait for the teacher to bring it up.  Again, you are preparing one child for school – the teacher is trying to prepare for an entire class of students (and their parents!) that all have different needs.

If you can, take your child to visit the school.  Even if it is the same school, show them their new classroom.  Take pictures of everything and make a picture schedule for your child to carry.  When Casey started elementary school, she had pictures of her desk, of her backpack on her hook in the classroom, of the bathroom, of all of the staff at the school.  Anything she might need during the day was included in her little book.

Make a social story book to help your child understand situations they might encounter, such as waiting in line or riding the school bus.  Try to think outside the box – go beyond normal.  I made up silly songs to help Casey.  (she liked my singing – Rob not so much!)

Let your child pick out their school supplies as much as possible.  Making choices gives them a little control over a world that is out of control much of the time.  Buy the clothes your child is comfy in.  Rob wore striped t-shirts with no pockets from Walmart for several years.  He chewed on the fronts of them, but he was happy and relaxed so I let him wear what he wanted.  I still do that.  Fighting over fashion is a huge waste of time and energy!

Consider your child’s sensory needs and be sure the teacher is aware of them.  The fire alarm could send both Casey and Rob into hysterics.  They were taught to cover their ears (though Rob had so many issues with noises, we eventually bought him a set of hunter’s ear protection to wear at school every day.  Not only did they block noise, but they gave him pressure on his jaw to ease anxiety) and the school informed their teachers before the alarms were pulled so they could warn the kids.

Try to be patient.  Remember that nothing gets done quickly, especially when there is testing that needs done, that can only be done after a certain paper is signed, after a specific amount of time has gone by.  Be patient, but be informed.  Stay on top of what needs done.

Teachers, please be patient with your parents.  You have the children 7 hours a day and you think about them more than that.  But – those children are not keeping you awake all night or refusing to eat or screaming and breaking things.  Your parents are more tired than you are and are doing the best they can.  Sometimes, a simple smile can do more for an exhausted parent that you can imagine.

Respect each other.  No bad mouthing – no criticizing. Understand you are both doing the best you can.  If there truly is a problem. talk it out.  Find a mediator to ease the discussion.  Say thank you.  Treat each other the way you want to be treated.  It’s simple.

Parents, I’m all for being nice.  But when it’s time to not be nice anymore, don’t be afraid.  You are your child’s best advocate.  You have to stand up for them.

Good luck this year!  I hope everyone has an amazing school year.  There were many times I wasn’t sure we would make it, but Casey and Rob both have high school diplomas and I couldn’t be more proud of them.  They worked hard and struggled many times, but they did it.  Casey even participated in her graduation ceremony!

We made it because of the love and dedication of so many people.  Karen, Stacey, Polly, Beth, Ruth, Donna, Wendy, Jerri, Cinda, Barb and so many others.  Know that the kids still talk about each of you and you  changed their lives.  We love you!

I hope each of your has a wonderful first day of school and an even better school year!

 

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Circle of Autism Mom Friends

Autism Mom Friends

It finally happened.  After many months of crazy schedules, we finally had our “Autism Mom” lunch today.  We weren’t all there, as it was a last minute plan (sometimes those work best for autism families!) but it was wonderful – relaxing – strengthening – and so many other words.  I truly love these ladies!

Yesterday was not an easy day.  Casey was sick and needed to go to the doctor.  We had a family emergency that Rob somehow found out about and his anxiety went over the moon.   Last night, I was as stressed as I have been in months and on the verge of tears.  I couldn’t handle his yelling.

I tried everything I could think of.  When he went to bed, I knew there was no way he was going to sleep as he was still yelling his “anxiety song.”  Most of the time, if I lay with him, he will calm down enough to sleep.  Last night, it took over two hours for him to calm down to sleep.  And I lay there thinking I was done.  I was so tired.

What got me through it was knowing that today I would have lunch with my autism mom friends.  They would know exactly what I meant.  They would completely understand that I love my kids more than anything in the world, but sometimes, I’m just so tired.  The worries of the day had caught up with me and I just wanted to sleep.

A few weeks ago, I wrote about the friendships my kids have and how special they are.  Today was special for me.  I have known most of these ladies for more years than any of us want to think about – more than 20 years for most.  Today, I met one for the first time.  I can only hope that we didn’t scare her too badly – we tend to laugh and carry on at times.  I was excited to meet her as she has a little girl and I know Casey would be thrilled to see another girl at autism mom suppers.  She is always the only girl.

Anyway – we haven’t seen each other for months and it was as if we talked yesterday.  We talked about autism, of course, and the challenges we are all facing.  Each of our kids are completely different.  Brandon is very high functioning.  Adam is blind, as well as having autism.  Riley is worried about his little brother going to college.  Alaina is just starting 5th grade.  And, of course, my sweeties.  Each one has challenges.  And every one of them has special talents that we love to brag about.

We laughed about the crazy stuff our kids have said.  We talked about Social Security and guardianships.  We talked about teachers and the sheltered workshop that some of the kids go to.  We talked about our county board of DD programs and Special Olympics.  We talked about the lack of much to do in our area for people in our situation.  After all, there are only so many times you can visit Wal-Mart or the Dollar Tree.

Then autism wasn’t the topic anymore.  Our other kids, our lives, our families were all covered.  Autism does effect all of that, too, so even if we didn’t say it out loud, we all understood it was there.  Talking about siblings leaving for college is different when the brother with autism feels abandoned by the brother leaving.  Summer jobs take on a different feel when your son has autism.

Anyone around us would have no idea what brought us all together.  I’m sure we looked like every other group of women in a Dairy Queen (ok – maybe a little louder!) but we are closer.  Drama and tears have forged a bond within us that time can’t change.  We have been the shoulders to lean on and the hugs to cry into.  We have seen each other at our best – and our worse and it doesn’t matter.

I’m still giggling about some of the stories we shared today.  I can picture Rob and Brandon walking down the hall in elementary school holding hands.  They took care of each other.  I can picture Riley as he told one of his stories in preschool and I wrote it down as fast as I could write.  I’m an expert at the Chicken Dance, thanks to Adam.  Sweet Alaina loved wandering through the quiet halls of the church.

I’m laughing to myself at the worries we share that no one who hasn’t lived with autism understands.  Food obsessions and pants that won’t stay up.  How to deal with stares of strangers.  I love that as much as autism as changed our lives, we are all still reaching for our dreams.  I love that we can laugh till we cry – or just cry and it’s all good.

I hope that each of you reading this has a chance to find an autism mom friend.  Or dad, of course!  Reach out to the parents of a child who is in school with your child.  They may be as lonely as you feel.  Join Facebook pages for parents with children with autism.  You don’t have to actually meet people to become close and be able to lean on each other.  Message me – I am always looking for new friends.

I know making new friends is hard, especially when your life is crazy, but a group of autism parent friends will change your life.  Having someone to call who completely understands the trials you are dealing with is wonderful and can help relieve your stress in ways that venting to other friends might not.

Our next lunch can’t come soon enough.  Thank you, Audrey, Lillie, Cherie and Mary Jo!  I needed the laughs today and you provided them, as always!

 

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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!