Category: parenting and autism

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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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Time for Summer Camp – Autism, Excitement and What did we Forget?

Summer Camp - Autism

It’s that time of the year again – a week of summer camp at Echoing Hills.  Casey and Rob are excited, I think, and I am, too – mostly.  It’s just such a weird time around the house without the constant thinking about what they are up to.  It’s so quiet.  It’s a time to realize just how much time I spend thinking about them.

That probably sounds odd.  I know so many families where autism is an incredibly difficult journey – every day.  I thank God that Casey and Rob are able to do as much as they do.  I don’t think about how much I still take care of them.  I’m told it’s because I’m used to it and just don’t think about it.  There’s probably a lot of truth there.  Autism is just our life.

It’s a different life than most people, but it’s not a bad life for any of us.  I hear people say they couldn’t live my life, but I couldn’t handle theirs, either.  Constant running their kids from place to place.  Late nights with the car.  Paying for car insurance.  Our life is just a different set of worries.

Worries for summer camp are the same, for the most part, I think.  Did we pack the right clothes?  Did I remember to pack the sun screen?  Will they get homesick?  Will they make any friends?  And every day, I wonder what they are doing and if they are thinking about me.  I’m never sure Rob really wants to go for the whole week.  I know he loves the weekend respites, but I also know that he’s a homebody and a few days away is about all he can handle.

He always seems happy to go, but he isn’t able to say he doesn’t want to.  The volunteers and staff of the camp never tell me he’s unhappy and I’m sure they would call or text me if there was a problem.  But, still, I worry.  Casey will just tell someone she wants to come home.  Rob won’t.  I don’t know how often they see each other at camp.  I know it would help Rob to see her and I’m sure she thinks about him. They watch out for each other when they go anywhere. (and that’s the coolest thing to see!)

I know when I get there Friday, they will both be waiting for me.  The camp is so organized that I can gather all of their stuff and sign them out before they see me.  That makes it so much easier!  Then, when they see me – oh!  The smiles!   Casey runs to me and gives me a real hug with her sweet smile.  She won’t let go of me as we walk to the car.  Rob will jump up and will probably ask for the van as soon as he sees me this year.  He will lean on me for a second, but it isn’t until we get home that he really says “hi.”

When they get home Friday, she will run to her room, turn on music and fold her socks.  He will grab his iPad, turn his AC on and hit the recliner in his room.  I will hear his giggles for a few minutes, then he will come to me and lean his forehead to mine or press his cheek against mine.  He does hug, but this is his preferred way to say he missed me.

It’s a strange week for me.  The quiet at home is interesting and it’s really strange to just go somewhere and not worry about being home when they get home from the workshop.  It’s strange to be able to go to sleep whenever I want and to not have to guard the food constantly.  It’s odd to be able to watch TV without the evening bath/shower ritual.  I’m not sure what to think.

It’s a freedom I don’t have often, but I’m not sure I can say I miss it.  It’s not something I ever had, so I can’t really miss it.  I think about the kids the whole time.  I know they are fine and I know they are having fun.  But, it’s just a mom thing, I guess.  I wish they could tell me what they did when they get home.  I wish I could hear about the friends they made.  I wish they could tell me what their favorite part of camp is.

The break is wonderful.  I have some projects that I want to do around the house that I don’t want to attempt when Casey and Rob are here, simply because it will stress them too much.  I plan to go to bed early some nights, just because I can.  I plan to spend time with Mandy and my friends.  I know I need the break.  You need one, too.

Hopefully, there is a summer camp near you for people with special needs.  We are blessed that Echoing Hills is only about 20 miles from our house.  Look on the internet or talk to your county board of developmental disabilities for possible camps.  Don’t worry about the cost right now – just search for one.  Ask other parents if their child attends camp and what they think of it.

Visit the camp before your child goes.  You won’t feel comfortable leaving your child until you have visited and asked every question you can think of.  Talk to the staff about specific issues your child may have.  Talk to the volunteers.

While you are visiting, ask the camp about possible scholarships to help pay for camp.  Many local service clubs offer to pay for camp for kids with special needs.  If your child has a waiver, the waiver may pay for it.  There are several ways to pay for camp – don’t let cost stop you from checking into it!  Every child deserves a chance to go to summer camp – your child’s autism shouldn’t make a difference.

You may think that the staff will never understand your child’s quirks.  You may think your little one will have meltdowns and then what will happen?  Trust me – I had those thoughts!  But – the application you fill out will be extremely detailed (and if it isn’t, consider another camp) about your child’s likes and dislikes.  You will also need to supply the camp with your child’s IEP or ISP.  You will have a chance to talk to the staff when you drop your child off.  At Echoing Hills, they are trained on each person in their cabin.  Safety is always the main concern.

It will be very hard to leave your child with strangers.  Trust me – the first time I dropped the kids off for a weekend, I cried all the way home and worried the entire weekend.  I couldn’t tell you anything I did except think about them.  I was early to pick them up – and they weren’t ready to leave.  They had fun and couldn’t wait to go again.  Hopefully, your child will have as much fun!

Even if you don’t think you do, you need a break.  Just a few days to feel like you – instead of an autism mom, dad, grandparents, whatever.  A few days to take a breath and watch TV or sleep the time away. (I’ll admit – a few weekends they went, that’s about all I did.  Rob wasn’t a good sleeper for many years!)  Explore summer camp options for your child and get the break you need!  Time to pack their bags – tomorrow is the big day!

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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!

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Autism Parenting Magazine Articles

If you haven’t had a chance to check out Autism Parenting Magazine, you need to.  It is a great resource for parents, teachers and families who are living or working with someone on the autism spectrum.

I have been lucky enough to be published in their magazine twice and now I can share these articles with you.  I am not receiving any compensation for this – just excited to help as many families as I can!

My articles are Autism Times Two: Double the Fun, Twice the Love and 5 Tips to Finding New Love When you Have Children with Autism.  I hope you enjoy both!

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Autism and the Person Inside

Autism and the Person Inside

An autism memory popped up on my Facebook page yesterday of a day that I remember clearly.  When I got up that morning, I discovered that, during the night, Rob had gotten into the refrigerator and all of the cardboard boxes (waffles, pizza, etc) had disappeared.

The liquid soap that usually sat on the bathroom sink was gone – only the empty bottle remained and the lovely smell of coconut filled the room.   I could feel the irritation getting a better hold on me.  Why couldn’t he just sleep?  I was tired and I just needed a break.

When I went into the kitchen, I found the dish soap bottle had also been emptied and there were a few bubbles left in the bottom of the sink.  I was ready to explode and trying desperately not to get angry at Rob or to say anything that would hurt his feelings.  I knew it was all sensory issues and he couldn’t help it, but still, some days, I just didn’t care.

I went about starting my day, grumbling under my breath about autism and writing a list for the store.  I packed lunches and got Casey up (she always needs more time than Rob to get ready!).  When it was time, I went in Rob’s room and watched him sleep for a few minutes.  He looked so peaceful and I wondered again why he couldn’t just sleep through the night and stay out of stuff!

He rolled over with a smile on his face.  I said, “Hey buddy – you need to sleep during the night.”  He jumped out of bed and ran into the bathroom.  At first, I thought he was getting sick and I followed quickly.  But he was standing at the sink and grinning ear to ear as he pointed to it.  I said, “I know – the soap is gone.  I wish you wouldn’t do that.”  He kept smiling and said “clean.”  Me – “I know, Rob, I need to clean it.”  He pointed again and suddenly, I realized – he wasn’t telling me to clean – he was proud  because he had cleaned it for me!

All of the irritation was gone in an instant.  I remembered saying the night before that I needed to clean the two sinks.  So, Rob did it for me.  Maybe not in the way I would have, but he used what was available to him (cleaners are never in sight at our house) and helped his mommy.  All I could do was hug him tight and say, “Thank you, Rob.  You helped me so much!”

His grin was huge and he ran off to get ready for school.  When he went into the kitchen he looked in the sink and laughed again.  He danced off to school, happy that he could help, while I sat at the table and felt like the worse mom in the world.  My little guy was trying to help  me and instead, all I saw was the sensory issues and the autism.  I didn’t think about his need to help me.

I wondered why it seemed that I always jumped to the conclusion that autism was the reason Casey and Rob did anything.  I thought about some of their “quirks” and knew that some could very well be because they are my children and not because of the autism.  We all pass on traits to our children – hair and eye color, height, temperament – why not some “quirks” too?

I’m guilty of not trying some foods because they look funny.  Some smells make me sick and there are certain fabrics that I don’t like.  The main difference is, I don’t have a meltdown when confronted with sensory issues.  I can say, “No thanks” and move on.  Who knows what I would do if I couldn’t verbalize what was bothering me?

So I try not to blame everything on autism.  Rob was helping his very tired mom and I got irritated and blamed autism.  I was wrong.  Maybe some of the things we get so upset about aren’t autism at all.  Maybe it’s just the way they see the world – maybe partially because of the autism, but maybe because we all see the world differently.

We all need to try to remember that autism is just a part of who our kids are.  Sure, it may be a big part, but it’s still just a part, just like what they look like.  It’s hard, but please – look at the person first and the autism second.  Some days, this is nearly impossible, I know, but it’s so important.

Our kids may not be able to communicate very well, but they understand what is going on around them.  Rob knew I was stressed about getting things done, so he decided to help me.  I still feel bad that it never occurred to me that he may be helping.  I just assumed he was looking for sensory input and making more work for me.

There are days when you will just hate autism.  You will hate that your child has to deal with something that most people can’t even begin to understand.  You will be discouraged and you will cry.  But autism should never be what you see first when you look at your child.  See their bright, curious eyes.  See their smile.  See the love they have for you.

 

 

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Autism and New Experiences

Autism and New Experiences

As many of you know, trying new things is not a favorite activity for people with autism.  Whether it’s a new food, new clothes or a new way to drive to school, new experiences are often stressful and can bring on sensory meltdowns – if you can even get your child to try!

When Rob was little, he wasn’t a picky eater.  There were things he didn’t like, but for the most part, he would try anything to eat.  Now, it’s hard to remember when that changed, but I know when he was in elementary school, he decided he would only wear striped t-shirts with no pockets.  It didn’t matter what  brand, but I soon bought all of them at Walmart because he decided to chew the front of every shirt.

Even though I had been living with autism for 10 years by then, it still never occurred to me that chewing on his shirts was a sensory thing.  He squeezed his jaw when he was anxious, so obviously he needed that deep pressure to calm himself.  It was natural for him to look for something to give him what he needed and chewing his shirts gave him that pressure.  It cost me a fortune to keep him in shirts and I finally gave up – he could go to school in chewed shirts.

Casey never chewed her clothes, nor did she care what she wore.  She would eat anything (even some combinations of food that would make the strongest stomach turn) and still does try anything.  However, she is afraid of water and heights.  The scary part is, even when she is scared, she will often still go in the water.  When she is scared, she squeals “Help” in a high pitched voice.

Rob finally pays attention to his fears.  He never had a fear of water.  He went into lakes or jumped off boats with no thought. (I caught him by the life jacket on more than one occasion)  We had a pool and he swam like a fish.  Unfortunately, a few years ago, he jumped into a pool with a friend who is several inches taller.  He couldn’t touch, got scared and water was no longer something he enjoyed.

He still loves watching water flow – he could sit for hours and watch a creek or waterfall.  You can see the anxiety drain out of him as he sits.  He enjoys hot tubs and, again, his anxiety levels drop.  Casey will slowly go into water where she can see the bottom, but no rivers or ponds for her.

Yesterday, we tried something new as a family and I’m so excited to say it was a huge success!  Mandy and Cory bought kayaks last year and Cory’s family has a campsite by the river that they have given us access to (It takes a village to raise a child – thank you so much to extended family!).  I thought Casey would probably go by the water and maybe sit on an inner tube, but I doubted Rob would.

Casey doesn’t care if her clothes get wet, but Rob does.  Your clothes are simply not supposed to get wet and he refuses to wear swimming trunks.  When he goes for aquatic therapy, he has a “special” t-shirt and shorts to wear so I decided that’s what he would wear yesterday.  He wasn’t happy about wearing shorts instead of pants, but he did it!  Score one for mom!

My dad had life jackets for both of them and, again, I doubted Rob would wear one.  I was wrong again.  He had no problem with putting it on and couldn’t wait to get to the kayak.  One of the kayaks is for 2 people and Mandy was going to take each of them.  Rob was careful not to get his shoes wet as he stepped onto the kayak and he wanted a paddle like hers.  He never figured out how to paddle correctly, but he tried.

Casey decided to wade in the river while she waited her turn.  Of course, as soon as she stepped in, she slipped and squealed “help” but she stood up and kept going.  I was so proud of her!  She slowly made her way to the middle of the river (where we were the water is only waist high at the deepest point – we didn’t let her go far and never without her life jacket on)

We brought another kayak and a tube down to the river.  We attached ropes to each and Rob climbed into the boat all by himself.  Casey hopped on the tube and for the next hour or so, Mandy and I held the ropes and let them float away and then pulled them back to us to float away again.  I wish we could have had cameras with us to capture the complete relaxation and small smiles on Rob’s face and the huge grins on Casey’s.  I am surprised that I’m even able to move my arms today but I couldn’t stop.  It was just too amazing to experience something new with them and to know they both enjoyed it!

Living with autism is hard on the whole family.  Too many times, there is something you want to try, but it just isn’t possible with the child with autism.  Then, if you do go, you feel terrible guilt because you didn’t include that child.  Many years ago, I finally realized that Casey and Rob don’t look at it as being left out.  They know how much I love them and would much prefer to stay with Grandma and Grandpa or Tracie instead of being taken somewhere that may cause stress.

Casey is able to go anywhere now.  She has made it through experiences that even a few years ago, she couldn’t have done.  She will go to movies, to shows (we’ve seen Elmo Live 3 times!) and anywhere to eat.  I don’t know why she can, but my guess is that she matured enough to try something and realized different things could be fun.  Now, she wants to go everywhere.

Rob is my homebody.  He is able to tolerate crowds for short periods of time, but is still picky about where he goes.  But – this is finally changing, slowly but surely.  His ability to get into the kayak yesterday without thinking twice is the perfect example of that.  At their day-hab, he is showing interest in activities that are outside those 4 safe walls and is even volunteering at a few places.

Again, I don’t know what changed.  He is still unpredictable about what he’ll try, but while he still hates new clothes, he is willing to wear them for short periods of time.  He will nibble at a new food.  He will go places, but I make sure it is for short periods of time until I know he’ll enjoy it.  Maybe he is maturing, too.

Never give up on trying things with your child.  Temple Grandin, a woman with autism, has said that we shouldn’t let our children stay in their worlds – that we need to help them join ours.  It’s not easy and it’s a slow process.  A turtle’s pace slow and sometimes, it’s one baby step forward and two big steps back.  I know you are discouraged and tired.

I know that taking your child out is scary and it’s exhausting. Bring all the supports you may need – snacks, fidgets, favorite books, iPads – and plan a short visit.  Only you can choose the best place to visit as you know your child better than anyone else.  Try to relax – your anxiety will feed theirs.  When your child starts to get anxious, pack up and go.  Make sure to tell your child how happy you are and how proud of them you feel.  You may not get a reaction, but they are listening – never doubt that.

Enjoy every baby step your child takes.  Cheer for them (and yourself – you deserve it, too!) and don’t worry about the next step.  Just like “typical” kids, your child will make his/her next step when they are ready and you can’t force it.

Never give up!  I completely understand that feeling and there were many time I felt like that, too.  When you do, just breathe.  Don’t think about the next month, the next day or even the next minute.   Just breathe, slowly and deeply.  You will get through it!

As for us, our next adventure will be taking a short kayak/tube trip down the river!   I’m not sure who is more excited – Casey, Rob, Mandy or me!

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Autism and that Helpless Feeling

Autism Anxiety

A few weeks ago, I wrote about Rob’s anxiety level and how even small things can make that level soar.  This week, I decided it was time to sell our van – it’s been ours for 13 years and Rob is having such a hard time with it.

At first, he took the For Sale sign off of it.  I wasn’t sure if he knew what the sign meant or was only protecting Grandpa Mack’s sign (he brought it home for me).  He likes our new car so I had hopes that maybe… just maybe…  he would adjust.  As long as the van was here, he was ok.  I took it to my parent’s house yesterday and last night was rough.

He asked about the van as he stepped off the shuttle.  He asked as he walked in the door.  He asked as he took his pills.  He asked as he ate his snack.  “Get da van?  Get da van?”  I told him it was at Grandpa’s house and that calmed him for about 2 minutes.  I tried to explain I was selling it, but trying to explain that concept without using too many words is nearly impossible.  Rob has a hard time processing words, so the fewer you use, the better.

Rob was ok for a while, then his “weather man” yells started and soon, it was storming.  Casey wasn’t yelling, but she wasn’t in a much happier mood.  She doesn’t care about the van, but she does care about ” funder (thunder!)noisy, hurts ears.”  I gave her a heavy blanket and gave him a pile of magazines and hoped for the best.

He came out of his room every 5-6 minutes and asked for the van.  I tried different words – it’s gone, we have a new car, it’s at grandpa’s house – but he couldn’t let it go.  I felt so helpless that I couldn’t help either of the kids with their stress.  Thankfully, the thunder storm passed quickly, so at least Casey felt better.

Rob seemed a little better at supper.  He didn’t mention getting the van at all, but soon after, he started again.  I don’t want to guess how many times he said “Get da van” during the evening.  I’m sure a few hundred, at least.  I tried distracting him, I tried ignoring him, I tried more magazines.  Nothing worked.

By bedtime, I had little doubt that it was going to be a long night.  He was tired and yawning, but couldn’t let the thought of the van go.  I was exhausted and falling asleep watching TV hoping that he would sleep soon so I could go to bed, too.  He lay in bed and talked and made his noises and every time I reminded him to use a quiet voice because Casey was sleeping, he asked for the van.

I don’t know what time he finally went to sleep, but it was way after midnight, I’m sure.  I simply couldn’t stay awake any longer and he had gotten quieter.  The first thing he said to me this morning?  “Get da van.”  He just can’t handle the change in his life.

Most of the time, changes cause him anxiety, but he gets over it quickly.  People with autism often have a terrible time when their routine changes, especially if it was unexpected.  Some will scream and have meltdowns, as Casey used to do when she had a snow day from school, while others will just become seriously stressed with no idea how to handle it.

As parents, we want to be able to help our kids through everything, whether that’s a change in their routine or a move across the country.  When I can’t help my kids, I feel so helpless. I know he needs something, but, unless I bring the van back, I don’t know what I can do except hope that he lets it go soon.

Last summer, my mom and I took the kids to Virginia for a few days.  Rob literally asked for Hopewell (the sheltered workshop they attend) the entire trip.  He repeatedly asked for “Tomorrow’s Hopewell?”  I hadn’t even thought about his anxiety about that, as I knew he would enjoy the hiking, swimming and the hot tub at the hotel.  Worrying about going to Hopewell never crossed my mind.

I felt so bad for him.  I had assumed that since he was with us, he wouldn’t worry so much about the change in his routine.  I was so wrong – and I was mad at myself for once again letting my son down.  I knew changes could bother both of them, but he’s a momma’s boy and I just thought he would be ok as long as he was with me.

Autism has taught me to expect the unexpected, but I still forget at times.  I knew Rob would have a hard time with the van being gone, but I hoped that he would like the new car so much, he would be ok.  So now I have to find new ways to help him understood this major change in his life.  It’s so easy to forget that the decisions we make every day can adversely effect the ones we love the most.

Some times, I get so tired of trying to think about every single way my choices can mess with my kids’ autism.  Their sensory issues can mess with the simplest things in life – what he will eat and wear, how long she can be in a store.  I know it’s impossible to think about every little detail, but I try – and then I get mad at myself for missing some thing that causes anxiety.

My advice to each of you is simple.  You will never be a perfect parent – to your child with autism or your typical child.  Your kids don’t need perfection.  They only need you and to know that, no matter what, you got their backs.  Let go of the helpless feeling and the “mom/dad” guilt.  It’s not easy, trust me, cause I have to remind myself almost every day, but life is too short.  Just let it go.

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Autism and the Mama Bear

An Autism Mom Defends her Children

I have always tried – really, really tried – to control my nasty temper.  I used to wonder why God gave me a bad temper – then I had kids with autism and that temper comes in handy at times to get my point across to people who just won’t listen.

One of my favorite movies is “Roadhouse” with Patrick Swayze.  In one scene, he is explaining to bouncers that they always need to be nice – until it’s time to not be nice.  And that’s what I do.  I’m as kind as anyone for as long as I can be.  And then Mama Bear comes out.

Anyone who has a child knows there are times when the child needs something that isn’t being provided to them.  Whether the school is refusing to listen or a doctor ignores your gut instinct, sometimes, you need to be demanding – and maybe loud.  It isn’t easy.

I hated being the parent that the school dreaded seeing.  But my kids were more important than anyone’s opinion.  I knew what they needed and I was determined that they would have every chance to be successful.  I learned the laws of our state and I made sure the district knew I knew them.  And that I wasn’t afraid to make phone calls if I needed to.

It wasn’t just their schools that made Mama Bear show up.  I remember one day when the kids were in their early teens.  We enjoyed going to our favorite craft store and looking around for ideas of things to make.  Casey’s obsession with socks was going strong at this point and she dropped in front of strangers all the time to jerk up their pant leg and check out their socks.  Even when it shocked people, most laughed.

As luck would have it, we got in line behind a jerk.  When Casey dropped and grabbed his leg, he freaked out.  I apologized and tried to explain about her autism.  He told me I needed to “Control that kid.  Freaks should be kept at home.”  And I saw red.  I calmly turned to Mandy, handed her the keys and told her to take Casey and Rob to the van.  As soon as they were out of hearing, I lost it on that jerk.  And I mean, full-on, out of control Mama Bear.

My exact words are lost in that red cloud of anger, but I do remember calling him a few names, telling him he was the one that needed to be locked up and then I told him exactly where he could go.  A large crowd had gathered by then, but I barely noticed them.  He just stood there – probably shocked – as I yelled.  A manager came over and the cashier explained what had happened.  When I stopped to take a  breath, she told the man he wasn’t welcome in their store and to please leave.

He mumbled something and left.  I calmly pushed my cart to the counter and paid for our items.  The cashier told me I was amazing and another mom said I did what needed done.  I said thank you and left.  I am not proud of losing my temper that day – but I doubt that man ever told another mom her child was a freak that needed to be kept at home. Or if he did, I hope he thought of me.

All of my kids have graduated, but the defending doesn’t end.  Casey and Rob can’t speak up for themselves, so I continue to do so.  Last week is a perfect example.  The details are not important, but what is important is that when I felt they were not being treated right, I went straight to the problem.  Unfortunately, the true problem isn’t one that can be resolved easily and even more unfortunately is the fact that the people who were only the messengers caught the brunt of my anger.

I did apologize to each of them and explain that I wasn’t angry with them, but the situation, despite many promises, was ongoing.  I hope they understood that I truly have nothing against them – the kids like them, so I know both are kind women.  But, Mama Bear was angry and someone was going to listen to me.

If you are like me, you will find yourself defending your kids for many years.  I doubt it will ever be your favorite thing to do, either, but if you don’t get your kids what they need, who will?  If you can’t speak up at meetings, write your thoughts down and read them.  It will help you concentrate and focus.

When I am really upset, I have a hard time truly hearing what is being said.  I have gotten into the habit of taking my best friend, Tracie, with me to meetings.  I can turn to her when I’m getting upset and she helps keep me calm.  Or she jumps in and offers the solutions we have talked about previously, but in my anger, I have forgotten.  You are allowed to take supports into any meeting.  Never forget that.

Whether it is a parent mentor who is trained to mediate meetings or it is your best friend, taking someone with you can help you during meetings.  Don’t be afraid to take notes.  Don’t be afraid to ask questions if you don’t understand.  Don’t be afraid to be a Mama or Papa Bear if you feel no one is listening to you.

I still hate being the parent that people dread seeing.  I want to treat others like I want them to treat me.  But what I really want is for people to treat my kids in the same way.  Respect and kindness go a long way.  Be nice until it’s time to not be nice.  Then let out your inner Mama and Papa Bear and get your kids what they need.

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Autism and Respite Care

Autism and Respite Care

I will be the first one to admit that asking for help is not easy for me.  I don’t like admitting that I am not a super-woman that can handle all that life tosses at me.  I don’t like admitting that I like a break from autism once in a while.  I feel like saying that means I need a break from my kids.

I know – it’s crazy.  We all need breaks from each other at times.  Typical parents need breaks just like special needs parents.  Spouses need breaks – siblings need them, too.  Being away from someone makes you appreciate them even more, right?  Absence makes the heart grow fonder and all that.

This weekend was one of my breaks.   Every few months, both kids spend the weekend at a camp about 20 miles from our house.  They also go for a week in the summer.  I’ll admit, the first time they went, I was terrified.  They had never been away except Grandma and Grandpa’s house and I was leaving them with complete strangers?  God was watching over my drive home that first night because I cried the entire way.  I just knew they would be upset and lonely all weekend and wonder why I left them.

As it turns out, I was wrong.  Very, very wrong.  They loved camp.  The counselors are all volunteers and are trained for the needs of each camper.  Casey and Rob made new friends and gained an independence that I could never teach them.  And I learned that, as important as we are to each other, we need to be apart, too.

The first time they spent a week away, I worried all week.  I enjoyed the time with Mandy and we did lots of fun things.  I have always tried to make sure she knew that she was just as special and important as her siblings and that week was wonderful for us.  Just watching TV and eating junk food was special because it was just us.  My biggest fear for Mandy has always been that she would somehow feel she wasn’t as important as Casey and Rob.  I won’t say I succeeded all the time, but I tried.

This weekend was a camp weekend.  I dropped them off at Echoing Hills  on Friday evening and picked them up early Sunday afternoon.  I thought about them the whole time they were gone, but I knew they were having fun.  They were going to the zoo with their friends and coloring eggs on Sunday.  The house was so quiet and I missed them.

But – I have finally realized it’s ok to miss them.  It’s ok to admit that I want to watch a movie without interruptions.  It’s ok to for me to want to go shopping with Mandy and not take Casey or Rob.  It’s ok for me to be me instead of “Mommy Jen” for a few nights.  It’s still hard for me to admit that – but sometimes, I get tired.  I love all of my kids more than anything, but I can’t be the best mom for them when I’m tired.

So, I enjoyed my lunch out.  I enjoyed shopping with Mandy and watching two (yes – two!) movies with Steve.  I crocheted this morning and watched TV in my PJ’s till noon.  I played on my tablet and I thought about them.  When it was time to pick them up, I was ready.

Like many parents of kids with communication problems, I’ve wondered if they love me.  I knew they did, but still, you know what I mean… that thought is always there.  After being away a few days, the kids are so happy to see me.  They are watching out the door for me to pull up and they run to me.  Casey’s eyes are twinkling as she hugs me tight.  Rob has a smile as he leans down and puts his forehead against mine.  The world is right again – Mommy Jen has come.

I ask about the zoo and Casey tells me she saw “da biggest tiger” and giggles.  Rob waits a few minutes, then says “turtle.”  I’m so glad he saw one – that’s what he really wanted to see.  We crank up the music and sing as loud as we can on the way home.

I doubt it will ever be easy for me to ask for help or admit I’m tired.   I know everyone needs it – no one can do everything alone.  When you are feeling alone, reach out, no matter how hard it is.  You are strong – asking for help won’t change that at all.  But the strong need to rest and if you wear yourself out, you won’t be the person your child needs.  Think about that.

Asking for help doesn’t mean you are weak.  It means you are smart enough and strong enough to know you aren’t perfect and you need help.  I know it can be hard, but ask for help and take the breaks you need from autism.  Taking breaks makes you stronger.  Take it from someone who has taken years to figure it out.