Tag: autism new experiences

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Autism and Little Tiny Steps Forward

Autism and Little Tiny Steps Forward

Yesterday, I heard about a Fountain of Dogs that a city not far from us has and decided to take Casey and Rob today. Casey had already asked about going for a long hike and I knew it was just too hot, so we went to the fountain instead. I knew she would like it just because we went somewhere and I thought he would because it’s water.

It is just as it’s described. A fountain with dogs in and around it – all spraying water at the center where a giant golden bone is displayed. She was laughing as soon as she saw it. He walked quietly to it and just stood there. I could almost see his shoulders relax as he watched the water sprays. Soon, he was sitting on the edge. He didn’t smile. He didn’t touch the water. He just watched. And his body became even more relaxed. When a bench in the shade became available, he moved to it and again, he was the picture of complete relaxation.

Casey, of course, had to get her picture taken with several dogs and had to try the drinking fountains (they were off because of the virus, I am assuming). She had to walk all the way around the fountain. I sat on a bench near Rob and enjoyed the fountain. As I watched them, though, it occurred to me that it wasn’t too long ago a trip like this would not have been a good idea.

For one thing, keeping Rob out of water has never been easy. He is drawn to it (aren’t many of our kids??) and can’t resist putting his hands in. He did dip his fingers this morning, but he made no effort to jump in the fountain. When he was little, I would have been sitting on him to keep him out – and Casey, too, probably. Visiting the fountain would have been an epic failure.

And – I let Casey walk around by herself. The fountain is on the corner of two busy streets (but, it’s Sunday, so not as much traffic) and even a few years ago, I wouldn’t have let her get that far from me – especially near streets. She has a history of bolting when she sees something she wants. But, today, I sat in the shade and watched her wander around and check out all of the dogs. She got right down beside a few of them and looked right in their eyes. (She even sat on a few!) Rob watched the water and never said a word.

As I sat there, I wished that the other people who were there had a clue just how huge this was for us. I wished someone else could see them enjoying something so simple – and that I was enjoying it, too. I wasn’t trying to keep her from bumping into people (she really doesn’t watch where she is going!). I wasn’t fighting to keep him out of the water. I wasn’t trying to keep him quiet. I was sitting – just like the other parents. It’s an odd feeling.

I thought of the many, many times we had to leave somewhere before everyone was ready because of autism. Whether it was a sensory overload or a meltdown from hunger or heat that they couldn’t communicate to me. Maybe it was just too much for me to keep fighting to keep one safe while the other wanted to run. Maybe I just didn’t want to deal with the stares. There have been lots of reasons why we didn’t try (or didn’t stay long!). But today – all of those little, tiny steps forward were obvious.

And that’s one thing about autism. There are always steps forward. They may be incredibly small, but they are there. Maybe your son hung up his coat or your daughter took her dishes to the sink. Maybe someone learned to put on their socks or grab their backpack as they left the house. Everything that so many other parents take for granted – we celebrate! Because, we all know, for every step forward, there will be one back. Sometimes, it feels like you are just stuck in the same place – no progress, no improvements, no reason to celebrate. I’ve felt that way – many times.

The funny thing is, I remember one particular rough time. It seemed like neither was making any progress – that we had been working on the same darn things forever and a day and weren’t getting anywhere. I was tired – fed up – discouraged – done. I just didn’t have the energy to care about those baby steps anymore. But, my aunt and uncle were visiting from Minnesota and we went to my mom and dad’s house to see them. (Honestly, I was ready to say “nope, ain’t coming” but I really missed my aunt and uncle, so I dragged the kids out of our house.) Anyway, while we were there, Rob was upstairs doing Rob stuff and Casey was sitting in the chair, smiling.

I was flopped on the couch next to my aunt when she said she just couldn’t believe how different they were from when she had seen them several months ago. I remember just looking at her wondering what she meant. She went on and on about the differences – how calm she was – how she was willing to talk a little more – how he looked at her when my aunt said hi to him – how quiet he was upstairs. And I was ashamed of myself. I couldn’t see the forest for the trees, apparently. Once someone else pointed out their progress, I could easily see it. Sometimes, it takes an outsider to show us just how much progress our kids make – every day!

When you are living the slow, steady path with all of the setbacks we see, it’s hard to see that your child is going forward! It’s happened to me, many times. You get so blinded by the long lists of what they can’t or won’t do, you forget there is a long list of what they can do! (Personally, this is one reason I hated IEP meetings so much. They were always about what Casey and Rob couldn’t do – not what they could! I thank God that their teachers always started with the list of awesome things they could do to start off. I wish all teachers could do that!) You forget that last week, he couldn’t make his bed or she couldn’t rinse her hair.

You forget that you couldn’t let go of their hands for fear they would take off. You forget that they can shower on their own and fold their clothes. You forget that they say “Hi” and name the person they are talking to. You forget that they stand for the flag and the National Anthem. You are too busy remembering he can’t tie his shoes and she can’t count money.

I encourage each of you to stop thinking about the can’ts for a few minutes and look how far your child has come. Enjoy every single one of those baby steps forward – shout it from the rooftops! Brag on Facebook! Send out texts – let everyone know about the steps forward! Those little steps are just as important as the big ones – and acknowledging those steps will keep you going during the rougher times.

Maybe one day, you will be able to sit by a fountain as your daughter explores the area and your son quietly relaxes in the shade. Nothing is impossible! 🙂

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Typical Week of Autism – What’s Next?

Typical Week of Autism - Whats Next?

This was a typical week of autism.  High highs and some lower days, too, but not super bad low so we’ll count it a good overall week.

Monday, we finally got to visit a state park about two hours from us.  Casey has been asking to go since last summer (it was one of those, yes, we’ll go and then ran out of summer days!) and she was thrilled.  However, despite being happy to  go, I was worried.  She had had major sinus issues all weekend and I had even told Tracie we would probably be at the doctor for a sinus infection instead of hiking.

She shocked me, though, and seemed better Monday morning.  She got out of breath a few times because her nose was stuffy but she laughed and giggled all day.  We had a picnic lunch before we began our hike and they both enjoyed that.

We visited Old Man’s Cave in Hocking Hills State Park.  The caves aren’t actually caves, but giant rock overhangs that people used to live under many, many years ago.  It’s so pretty and the trails are easy to follow.  Rob enjoyed looking at the creek and the little waterfalls – until we got to the “cave.”

He was walking with Tracie and seemed okay walking in at first, but he quickly decided he wasn’t staying.  There were a lot of people (but not super-crowded) and he turned to go back up the trail.  Nothing we could say would convince him to walk farther to see a bigger waterfall.  It wasn’t a big deal, so we turned around.

He stayed well ahead of us to make sure we wouldn’t try to make him go back and it wasn’t till we were back near the car that we both had an idea of what the problem might have been.  It hit me that he is severely claustrophobic – maybe the overhang (which was barely enough clearance for him to walk) was just too close for him.  Tracie remembered it was supposed to rain/storm later and we knew either reason could be right.  Or he was hot.  Or he had to go to the bathroom.  Or… or… or….  who knows?

Because it was so hot, we decided to drive to different parts of the park instead of hiking the entire path (several miles).  He jumped out of the car at the next place and happily started the hike.  Even when we had to walk down many flights of steps, he was fine.  He looked around and laughed.  Again, it wasn’t until we got close to another overhang that he got anxious.  He stood still (sort of!)  for one picture and then took off up the path again.  We had to keep telling him to slow down, as this was rocky and we were both afraid he would fall.

There was another spot nearby that had a waterfall and the hike wasn’t too long.  As soon as we got into the woods and looked down at the pool of water and the falls,  both kids got big smiles on their faces.  When we finally got down to it, there were several people wading in the water (it was clearly marked no wading or swimming…. but…  🙂  )   So I took my shoes off and asked Casey if she wanted to go wading.  She immediately took hers off.  I knew Rob would never go wading, but I had to try.

And he sat down, yanked his shoes and socks off and came right to me!   To say I was shocked is an understatement!  He never goes wading – ever.  I don’t remember the last time I saw him do it – not since he was little, I’m sure.  He walked through the cool water, found a big rock to sit on that he could still keep his feet in the water and he let the waterfall hypnotize him.  It was the best part of the day!  He looked so happy and relaxed!

Unfortunately, after our fun day of hiking, Rob and I both woke up with stuffy noses and coughs.  I thought it was allergies, but then we both had no energy.  He asked for the doctor one night, but then changed his mind.  So we took it easy all week – coughing and resting.  It’s just way too early to be dealing with this stuff!

We also had to deal with another issue that had both kids anxious and upset.  While I do share a lot on this autism blog, there are things that I believe are too private to the kids – or that may make the problem worse if I write about it.  It’s nothing I can change, fix or fight about – nor can I explain it to them to make them understand what is going on.  So besides not feeling good, they are both upset about this problem.  A low point of the week – trying to explain that they are not the problem.  Rob takes things like this very personally and is having a harder time than Casey.  She just keeps asking.

On Friday, they were supposed to go swimming with a group of friends from their workshop.  I had a feeling it wouldn’t go well, as this was the pool that Rob got stung at last year and he never forgets things like that.  But,  he wanted to go and I want him to try whatever he’s comfortable with.  I told staff that I would be available all day so I could go get him if needed.  He wasn’t there long before the anxiety got to be too much.  So I brought him home and wondered why exactly he was anxious.

Was it the weather?  (more storms coming!)  The bee sting?   The fact there aren’t any fountains to stand under in the pool?  Not feeling good?  The stress he was already feeling?  As a mom (thank you, Yvette!) commented on our Facebook page (and I LOVE this – it’s perfect for autism!) it’s like the Tootsie Roll commercial – how many licks does it take?  The world may never know!  I’ll never know why and he can’t tell me.  And I’m left thinking that sometimes, autism just isn’t fun for any of us.

So this week has been up and down with autism.  I am so proud of the things they accomplished this week!  I can’t imagine having a head full of thoughts and not being able to express those thoughts easily.  But every day, they keep trying with smiles and giggles.  If only we could all face our troubles like this!

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Autism Moms and the Need to Just Chill Out

Autism Moms and the Need to Chill Out

As soon as Mandy sees this post, I can imagine the look on her face – she told me to do just chill out several times today.  I know I need to do that, but you know how hard it is!

She called me this morning and asked if I wanted to bring Casey and Rob to a cookout at her in-laws camp site and then take a long kayak trip.  Oh man!  I haven’t been on the river yet this year and I wanted to go so badly, but the autism mom kicked in.  Who will be there?  Do they know about autism?  What if Rob gets loud?   That was the first time she told me to chill out.  “we got it covered, mom.”

Okay, she thinks no one will be bothered by the loudness, what about taking them on an hour long trip?   We hadn’t tried that, yet – only playing by the camp site.  “I got it figured out, mom,” she said.  Her plan was to tie their kayaks or tubes to ours.  And I wanted to go so much.  I still wasn’t sure about Rob, but I could just take him home if he got anxious.  So I asked them if they wanted to go and Rob was so excited he changed into his swimming clothes right then.  (We weren’t leaving for a few hours!)  I was amazed, as he hates to wear shorts.

As I was driving, I thought about how many times I wanted to do something and really wasn’t sure about the kids so I backed out.  It’s just easier to stay at times – you all know that.  And, really, there are things that I know one or the other won’t enjoy and I either take just one or we stay home.  I did that yesterday – we were all invited to a graduation party and I knew Casey wanted to go.  I thought about taking Rob, just for a few minutes, but he said “No, fanks!” as soon as I mentioned it.  He went to Grandma and Grandpa’s house and Casey went with me.

So we get to the camper and I’m getting nervous.  Rob started singing his anxious song, but he was doing it quietly and only once.  He wanted to see the water, so we sat on a bench where he could watch the river flow by and he got quiet.  He asked for the boat once or twice, but I told him we were going to eat first and he was okay with that.  Casey just watched everything and rocked a little.

When it was time to eat, I asked Casey to wait for Mandy to get her plate and again, I got the “chill out, mom” look from Mandy.  So Casey fixed her own plate (she’s perfectly fine doing that – I was just trying to keep her out of everyone’s way – course, no one was paying attention anyway – they were fixing their own plates!)  They both ate (I was impressed – you can never be sure Rob will eat – especially when he is excited about something).

As soon as we finished, Rob started getting wiggly.  He was ready to get in the boat.  Mandy and Cory got the kayaks ready while I wondered if Rob would actually step down into it.  The water was a little higher than when we were there before and he refuses to get his shoes wet.  Casey got into hers first – squealing “help” a few times – she thought we were going to send her down the river alone.  She calmed down as soon as she saw me get into my kayak and the rope holding us together.

I got us out of the way and turned to see if Rob would get in.  And was amazed when he stepped right in and settled down with his paddle.  Soon, he and Mandy were beside Casey and I and we were off.  We had decided to take them to the end of the campground and see how they were doing.  If either was anxious, it would be easy to get out there.  They both wanted to keep going.  Rob looked half-asleep – he was so relaxed.  He even splashed his hands in the water!

Now that we are home, Casey said long trips are fun, but about halfway through the trip, I had serious doubts about her.  She kept taking big breaths and sighing.  But she never got upset.  She didn’t relax as much as he did, but she seemed okay.

I looked around at the beautiful blue sky, the green trees along the river and the kids doing something together and wondered why I ever thought about not coming.  We would have missed spending a gorgeous day outside with family and friends.  It’s just that autism mom way of thinking.  And I know we all need to just chill out and go places.

Trust me, here – I am not saying you should take your child everywhere.  You know there are places that your children won’t enjoy – just like I knew Rob wouldn’t like the graduation party.  But we owe it to our kids to try new things!  We owe it to them to show them as much of the world as we can.  It may not be easy, but life rarely is – even without autism.

My advice is to try not to be scared at the thought of trying new things with your child.  It’s not that I’m afraid of trying new things – more that I overthink what might happen and worry about ruining other people’s good times.  Like today – if Rob had gotten anxious, we would have just come home.  It wouldn’t have been a big deal as Casey could have stayed with Mandy and Cory.  But I let autism into my head and it’s hard to get out sometimes.

Autism dictates so much of our lives.  It’s a simple fact that we will never be able to change.  What we can change is our reaction to it.  Even typical people have issues sometimes, so why do we worry so much about taking our children with autism into the world?  Take whatever you think might help and go.  Stay a minute, stay an hour – whatever you and your child can handle.  Only by experiencing the world can your child want to more a part of it.  If he/she has no idea kayaking exists, how would you know if they enjoy it?  You might have a star ball player or expert piano player – but only if you let them try.

Take a deep breath, chill out and go!  It won’t always work out, but at least you tried!

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Autism and the Unpredictable Speed of Change

Autism and the Unpredictable Speed of Change

When you live in a house with autism, you become adapt at keeping things the same – the same foods, the same schedule, the same clothes.  That’s why Rob’s changes in the last few weeks have pleasantly shocked me – and made me wonder “WHY?”

Rob doesn’t like new foods, new clothes or new places.  New people make him nervous until he gets a reading on them (Both Casey and Rob sense the true person inside – if they don’t like/trust someone, I watch that person closely!)  But, last week, he put a new shirt – all by himself.  Now, yes, it was the same brand that he loves, but that has never mattered before.  Even a new shirt that was exactly like an old one was something to avoid.

He used a hammer to hang up signs in his room instead of telling me to do it.  He made pancakes.

He ate canned fruit a few weeks ago.  Not because I asked him to try, but because he saw it in the refrigerator and asked for it.  (apparently, it has to be canned pineapple, not the little snack packs, because he refused to eat those – but, hey!  He tried!)   He also tried a blackberry (and it flew across the room when he spit it out!)  I can put different things in his lunchbox.

He has been coming home and not running for his iPad immediately.  He has been playing with his Legos, lincoln logs, trains, and magnetic blocks again.  He does still get excited about ripping up magazines and cardboard, but isn’t actively searching for it.  He lays on his bed and just chills out.

The staff at their workshop said he has been joining in activities more at the shop.  I heard stories about his laughter and how silly he can be.  A few weeks ago, a strap on his sensory swing broke and he fell (not far – thank God he was just sitting in it and not swinging widely!).  I was so worried about him not having his swing.  When it was installed, it was to help him with the out of control anxiety he was dealing with every day.  I also worried that even if it was fixed, he would never use it again – he tends to remember when painful things happen and can’t understand that just because it happened once, it may not happen again.

So I filled out the paperwork and the part was ordered.

And now, he acts like he doesn’t need or want it.   HUH??

Last week, he went to play Bingo at a nursing home.  (WHAT?)  A staff member asked anyone who wanted to go to get their coat and he did.  While we have played Bingo at home, he loses interest quickly.  He even played while there!  A new activity in a new place?  The autism mom in me was suspicious.  What’s going on?

The moon isn’t full.  The weather is as crazy as it’s been for weeks.  His meds haven’t changed.  The people around him are the same.  Our schedule is the same.  I wracked my brain trying to figure out why he was so willing to do new things.

After Bingo, he went to aquatic therapy, which he loves.  On his way home, he stopped a staff member to show her his swimming bag.  It has Mighty Morphin Power Rangers (the first ones) on it and he named them all for her.  He started a conversation!  Rob talked first!  Can I be any happier??

The next day, he went to a care center to do crafts with residents.  He talked more about the power rangers.  He sat and did as he was supposed to.   And as happy as I am, I want to know why?  What changed and what can I do to keep him excited to try new things?

He went to play basketball. He went to a gym and walked.  He came home and got sick later that night and even that was different.  He’s always been too scared and upset to be alone when he is sick.  This night, he took care of everything on his own.  I didn’t even know he was sick.  I did stay up with him, as he never went to sleep that night (or until early evening the next day, even though he was feeling much better).

His schedule changed Friday evening and he didn’t care.  He played with his blocks and went to bed.  The weather changed quickly last night and he hasn’t seemed to notice.

I am over the moon happy for all the positive changes.  I am so proud of him for trying things that truly stress him beyond anything I can imagine.  But, I still want to know why?  Has he just matured?  Was he spending too much time in the swing at the workshop?  But how can you tell, cause it wasn’t that long ago that he couldn’t get through his day without that soothing him.

Something like this happened to Casey several years ago.  She wasn’t always the social butterfly she is now.  She much preferred staying away from stores and restaurants and to only go to familiar places.  After she graduated and moved to the workshop every day, she began to open up to the idea of trying new places.  Now, it’s a struggle to make her understand that money doesn’t grow on trees (or in my purse – she thinks it just magically appears there) and she has to pick and choose what she does.  For the most part, she is doing awesome with that.

Maybe that’s all that’s happened with Rob.  He matured enough to handle stress and the idea of new places and people.  I hope that’s all it is.  I worry that someone was bothering him and that person is no longer near him.  I worry that he hasn’t felt well and I didn’t know it.  Don’t you love autism mom guilt?  I just need to let it go and enjoy the changes in him!

I’m excited about all the changes and I’m loving every minute of it!  I hope it continues and that he might learn to enjoy new things – or at least to try them with proper supports.  Both of them are going to a planetarium tomorrow – neither even know what it is (Casey thinks she is going to a star!) but he’s willing to try.  I can’t wait to hear how it goes!

I hope reading about the changes in Rob helps you remember that our kids are constantly changing and growing and maturing.  Your child may not like new things now, but maybe that will change.  They are learning more every day – even if we don’t see immediate results in the hard work we do with them.  Keep the faith – and keep trying, even when you don’t think it’s doing any good.  It is – I promise you!

 

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Autism and Halloween – Fun or Too Much Stress?

Autism and Halloween

Halloween is almost here again and Casey has asked several times about trick or treating.  The funny thing is she always answer herself with “Trick or treating is for little kids.”  I know lots of parents of adults with special needs take their kids trick or treating and I think that’s great. For me, autism and Halloween have never been much fun.

I think there was one year that Rob wanted to wear a costume.  He always wore one because his sisters did, but he truly couldn’t have cared less.  Trick or treating wasn’t fun for him – again, he did it because Casey and Mandy did, but he didn’t like being in crowds of people, especially when they were in costumes.  He didn’t like talking to people – “Trick or treat” or “Thank you.”  He didn’t care about the candy.

Casey liked dressing up, but she rarely said what she wanted to be.  She wanted the candy that came from trick or treating.  She didn’t care if she appeared rude as she grabbed candy.  Taking the three kids trick or treating was so stressful for me.  If given the option, I would stay home and pass out candy.

In the last few years, Casey has chosen what she wanted to be.  One year, she was a mermaid – another a unicorn.  This year, she wanted to be Dorothy from the Wizard of Oz.  This completely shocked me because that movie was never her favorite.  Mandy and Rob were obsessed with it – Rob still is.

Mandy and I decided if she wanted to be Dorothy, we would all be Wizard of Oz characters and go to the County Board of DD dance together.   Casey and Rob love the dances and I’m so thankful our county holds dances several times a year.

We really weren’t sure Rob would get into the whole costume thing.  I talked to him about it and asked who he wanted to be.  He wouldn’t answer, so Mandy decided to be the Cowardly Lion and I would be the Scarecrow.  Rob loves wearing hats, so we thought we would get a funnel for him and be happy with that.

My dad actually made a neat funnel hat for Rob and he was thrilled with it.  He couldn’t stop giggling when he saw it and tried to wear it over his headphones.  We talked about the dance for a week or so and I kept telling him he could be the Tin Man.  He just laughed.

The night of the dance, I hoped he would wear a gray shirt, but knew the chances weren’t great.  I cut out a heart for him and made an axe.  When he saw us getting ready, he jumped up and put his shoes on.  I asked him to please wear a gray shirt – and he immediately pulled off the red shirt he was wearing.  I put his t-shirt on inside out to cover the logo a little – and he left it that way!

He even asked to paint his face!  (Mandy had painted a lion face on herself and given Casey a little make up)  I never dreamed he would sit long enough, but he let me paint his face and asked for his arms to be gray, too.  I told him we’d better not paint his arms and he was ok.  He grabbed his axe and put his hat on and was ready to go.  (A word of caution – paint and beards do not go well together.  I never thought about that.  His beard was like a brillo pad and he was not a happy guy as we tried to get the paint out later!)

We posed for pictures and headed to the dance.  We got several compliments about our outfits and Casey took off dancing after tossing her basket and Toto at Mandy.  Rob climbed to the top of the bleachers in his usual place.  Casey danced her figure 8’s around the floor and he watched the flashing spinning lights.

Soon, he got up and actually danced with me!  He asked for “The Twist” but he was willing to dance to other music.  He has his own style of dancing, but I was so excited to see him willing to try something new!  Casey even slowed her dancing ( I use that term loosely – she tends to gallop back and forth and jump up and down) to dance with Mandy.   We had so much fun dancing together – and his hat stayed right on his head.  He was so proud of it.

I know how hard holidays can be for your little ones with autism.  I don’t miss the stress of trick or treating at all.  I don’t miss Halloween parties that I didn’t enjoy because Casey and Rob didn’t.  I don’t miss struggling to find ways for them to enjoy Halloween, too.  But, I have learned that just because something has “always been done this way” means it can’t be done differently.

We make our own traditions – ones that we can all enjoy together.  I remember the first year that all three kids carved their own pumpkins and how proud Casey and Rob were. (For the next several years, their pumpkins always looked exactly the same.)  Last year was the first time Casey didn’t ask to carve a pumpkin.  She hasn’t mentioned it yet this year.  I can’t decide whether to be happy to avoid the mess or sad that she is growing up.

There is more awareness of autism now than when my kids were little.  Hopefully, you won’t meet as many people who make nasty comments about your child’s lack of communication or the fact they aren’t wearing a “real” costume or are trying to grab too many pieces of candy.  If you do meet any, educate them, if possible.  Ignore them otherwise.  Some people will never be aware of the needs of others.  Don’t let them ruin your fun.

Dress your little one in whatever they can handle.  If it’s not a “real” costume, who cares?  Your goal is to help them have a night of fun – not to worry about the ignorance of others.  If your child is non-verbal, print a card that says “Trick or treat” on one side and “Thank you” on the other.  You can easily help them flash the words to people.

If your child only wants to go to one house, visit one and go home.  No one needs that much candy, anyway, and you’ll hopefully prevent a meltdown from sensory overload.  You may have to adjust your expectations to fit your child and that’s ok.  You can’t force your child to enjoy something and the possibility of a meltdown just isn’t worth it.

Adapt your plans as you need to.  Do what your child needs to do.  Ignore the people who have opinions on how they would handle Halloween – they are not experts on your child like you are.  I hope that your Halloween is a fun and happy time for you and your family.  I’m still so excited that Rob joined in this year and am hoping you have a wonderful time, too!

 

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Autism, Sensory Issues and Fun

Autism, Sensory Issues and Fun

In our house, the last weekend of September/first weekend of October is a time to be thought of all year.  That’s the week that the fair comes to town with all of the spinning, dropping, swooping rides that Casey and Rob just adore.  Their autism sensory issues enjoy the most amazing times on those rides.

Rob loves anything that will swing him.  His absolute favorite is a giant boat that swings back and forth.  While most people want the end seats so they go higher, Rob doesn’t care.  If the end is open, he’ll sit there, but he’ll take any seat, as long as he gets to swing.  He was on this ride at least eight times this morning.

Another favorite is one that swings side to side.  He giggles as soon as he sees it and smiles through the whole ride, even when it goes high.  It always amazes me that he is scared of heights (won’t even think about riding the Ferris Wheel) but he’ll happily jump on rides that go just as high.

He refuses to go on anything too high.  Or anything that will go upside down.  He likes to go in circles.  Casey will ride anything, at least once.  She has to ride the Ferris Wheel, even though she is terrified of heights because she has rode it every year.  It’s routine and you can’t break routine!

We plan to get to the fair early on Sunday mornings, because there is never a crowd.  The kids can run from ride to ride without stopping.  By the time the crowds come, they are ready for French fries and to head home.  Rob doesn’t like crowds at all and after a few hours, both of them begin “shutting down” because they are over-whelmed.  What was a dream time turns into a difficult situation for them.

The swinging calms Rob down.  I’ve often told our neighbor I was going to buy a huge boat swing for our backyard.  She was completely agreeable, as long as she could ride it, too.  While I am joking about the giant boat, I desperately wish I could find something else that makes him so calm and happy.  He loves his swing, but it can’t swing him as far and as high as he wants.

Many families I’ve talked to don’t go to the fair.  The noises, the lights, the spinning, the people – it’s just too much for many people with autism sensory issues.  I understand that completely.  While the kids enjoyed the fair when they were younger, it wasn’t nearly as much as now.  Today, they can tell me what they want to ride.  They can tell me when they have had enough.  (usually by asking for fries – that’s always been the last thing we do and as you know, you can never break the routine!)

Casey and Rob rode constantly for a few hours.  I don’t think Rob was completely ready to stop, but when Casey asked for fries for the third time, we knew it was time to go.  I can always tell by the look in their eyes when they are becoming overwhelmed and shutting down.  The happy, sparkles that they start the day with are gone and dull eyes are looking out.  They both withdraw when they are overwhelmed.

When Casey was little, she didn’t give me any warning that she was overwhelmed until the meltdown happened.  She wasn’t able to say she had had enough.  Thankfully, she can now.  Hopefully, your little ones will grow into that skill, too.  Rob never had those meltdowns.  He would just withdraw into himself until he felt better.

I’ve always been willing to leave when the kids let me know it’s time.  It’s hard to do that, sometimes, when it costs so much to go to the fair, but at the same time, we have beautiful memories of a day spent together laughing and having fun.  It’s hard to put a price tag on that, especially since for so many years, Mandy and Cory were far away and not able to go.  Having them all with me today was so special and a day I’ll never forget.

There was one minute today that I felt a little melancholy.  When Casey and Rob are at the fair, someone is with them all the time, except when they are riding. (I watch them get on and then go to the exit and wait – it’s awesome to be able to do this!)  I saw some women sitting on a bench, enjoying each other’s company while their kids ran around the rides.  For just a second, I wondered what it would be like to come to the fair and be that relaxed.

It’s not that I was jealous.  More that I was curious about a life like that.  But, as Cory pointed out, I could do that, if I wanted to – just go to the fair without the kids sometime.  He was grinning and I had to laugh, but he’s right.  I may wonder about the lives of others, but in reality, they have problems, too.  Maybe not the same issues that we have as a family, but something.

I hope that each of you can find ways to enjoy family time together.  It’s never easy (But I doubt it’s all that easy for “typical” families, either!) but go for it!  Stay a few minutes.  Leave when you want.  It won’t work out all the time, but when it does, you will feel like I do, right now.  Happy, relaxed and so blessed to have the kids that God gave me.

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Autism Mom Takes a Break – and That’s OK!

Autism Mom

Every year in August, I take a few days and get away from real life.  And every year, I think “why am I doing this?”  It’s such an effort to make plans for the kids and so much worry.  Sometimes, it seems it would be easier to just stay home.  But every autism mom (and dad!) needs to get away from autism for a while.

The crazy thing is – I’m so lucky!  I have plenty of help with the kids.  Their behaviors are minimal and no health concerns.  It should be simple.  It is simple.  And the autism mom guilt hits me.  As I’ve told you before- I absolutely hate to ask for help.  I mentioned that to Tracie and she told me to get over myself.  She’s right.  But still… the guilt lingers.

In all honesty, Casey is thrilled I’m going away.  She loves seeing the schedule for the weekend and she asks for a present (preferably sweet tarts) when I come home.  She uses a calendar and understands when I’ll be back.  In the meantime, she giggles that Tracie is coming!  She laughs about Grandpa and Grandma spending the night here.  She can’t wait to sleep at Mandy and Cory’s house.  And she knows that she can smile her sweet smile and try to get her way, since mean mom is gone.

Rob isn’t as excited.  It used to be really hard on him when I left.  He would say “Mom’s here” every few minutes the entire time.  He wouldn’t look at the schedule and didn’t care who was staying where.  I had disrupted his world and he needed to know when I would be back.  Thankfully, he only asked once or twice while I was gone this time, so things are improving.

When I got to Mandy’s to pick them up, Casey smiled her beautiful smile and came for a hug.  Rob jumped up and yelled “Get da van!”  (yeah, he’s STILL doing it.  Over and over and over.)  Once he was home, he came for a hug.  Few things feel as good as a bear hug from my big guy!  He doesn’t hug easily – and often, he backs up to whoever wants a hug and lets them hug him.  I love that he wants to hug me as much as I want a hug from him.

So I made my schedule.  I packed his lunch for Friday.  I put them on their shuttle Thursday morning and tried not to cry.  I made notes for everyone.  Why, I have no idea, since it is about the same thing every year.  I separated their pills.  I made sure they had plenty of clothes.  Yes – I get obsessive at times.  I just want everything to be fine while I am gone.

The second time I went away for a few days, I made a schedule for the kids.  Every thing they would be doing was on a separate slip of paper so they could pull it off the door as they finished it.  This seemed to really help Casey and she loved pulling the papers off.  I wrote everything down – come home and take your pills, Tracie will take you for supper, take a shower and your pills, etc.  Everything they would be doing was on a slip.  I made a schedule for Tracie, my parents and Mandy that was much simpler – just who would be where when.  They all got copies and I hung one on the pantry door.

The last few years, I haven’t made tiny slips of paper.  I just typed the schedule and printed it and Casey was ok with that.  Rob began to read the schedule.  He may not have been happy with my leaving, but he doesn’t get too stressed about it.  I am assuming every time I leave and disaster doesn’t strike that it will get easier to go.  I doubt it, though.

Part of the problem with this autism mom is that whole asking for help thing.  But another part is just a typical parent. I know Casey and Rob best (though Mandy is pretty darn close!) and I worry.  I want the kids to be able to be with others without problems and I know the only way that will happen is if they are with others.  But I worry.

But I got things ready.  I double-checked plans. I triple checked plans. I packed my clothes.  And I left.

My destination was about 6 hours from home.  Since I was driving, I had plenty of time to wonder what I forgot.  And remind myself that everyone here could handle anything that happened.  I wondered where they would pick to go for supper.  As I drove through the mountains, I thought about how much Casey and Rob loved the mountains and playing in the streams (or watching the water).

Every  parent that leaves thinks about these things, I’m sure.  It’s not an autism mom thing.  But, it is different when your child has special needs.  Especially if there is a medical concern or verbal difficulties.  You need to go, though.  You need to take a break.  I usually leave on Thursday and am back Sunday afternoon.   That’s long enough.

You may not be able to get away for that long, but you do need to get away.  If money is an issue, see if you can visit a friend or family member.  You have got to have time to recharge yourself to be the parent your little one deserves.  They may not understand why you leave, but that’s ok.  They will still love you when you get back.

I know how hard it is to go.  I know that you think no one can care for your child the way you do, but that’s ok.  Part of teaching our kids with autism is to teach them to try new things – to be around new people.  Your child needs that.  They need to know that even if you are gone, they are safe.  You can do this!  Make your schedules, check and double check your lists.  Leave notes everywhere.  And then – GO!

You need time to take a deep breath.  You have to be able to sit and listen to nothing.  I sat in a lounge chair and watched people one afternoon.  My biggest decision was whether to have a candy bar or a cookie.  It was wonderful!  I had a book with me, but never opened it.  I just sat.  And yes, I text home about the kids and was always told how much fun they were having.

Let go of the guilt.  I try, but it usually shows up.  But – I go and I have fun and I know that’s ok.  I am allowed to have a life beyond autism mom.  You are, too!  You deserve time away.  And your child needs it, too.

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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.