Tag: friends

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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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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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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!