Tag: respite camps

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Home from Camp – Back to our Normal

Home from Camp - Back to Normal

Thank you, Camp Echoing Hills for another amazing week of camp for Casey and Rob.  While I’m still only hearing bits and pieces, from the smiles and giggles that accompany those few words, I’m sure they had fun.  Casey has already mentioned that camp is in July 2019 and wants to write it on a calendar. (Luckily, we don’t have next year’s calendar, yet!)

Casey sang in the talent show and one of the staff was sweet enough to record it for me so I could enjoy it, too.  (The fact that Rob is asleep on the floor behind her just adds to my love of the video!  🙂  )  She chose to sing Baby Blue – the same song she sang at the other talent show a few months ago.  I wish she would sing more – she truly has a beautiful voice.

Rob told me the pool was the best and he got wet.  He said he saw a cross and he saw a fish.  He said Donald is his friend (and another name, but he’s saying it so quietly, I can’t quite tell who he is talking about).   Casey said Bert liked camp and that he snored (for those who don’t know, Bert is a stuffed toy from Sesame Street!)  She went swimming and she went fishing.  When asked what she caught, she said a hot dog.  I’m a little lost about that because she’s insistent that she caught one.  Maybe they use hot dog as bait?

Mandy was actually getting off work as I got there to pick them up, so they got to see her, too.  They were both waiting on the porch.  Casey’s eyes were twinkling and she came right to me for a hug and a sweet smile.  Rob was a little farther away and he let out one of his loud yells before he came to me.  (Maybe he didn’t want to leave, yet? 🙂  )  More likely, he was singing his storm song as the weather was crazy that day.  Either way, I got my super sweet hug from him as soon as we got home.

They were both surprised when we got home.  I had given both rooms good cleanings when I didn’t have them to help me decide what to keep and what to throw away.  Casey laughed and laughed that her Sesame Street stuffed toys had gotten baths.  She had to arrange them perfectly – apparently, they go in a special way that I never thought to look at before I took them off the shelves.

Rob was concerned because I threw away a bunch of his magazines.  I really try to not throw anything of theirs away without talking to them first, but he had too many.  There were two stacks and each stack was close to 5′ high.  One fell the night before they went to camp and we talked then that he needed to get rid of some before they fell and hurt him.  Once I gave him some card stock to rip up, he was fine.  I still felt guilty, though – even knowing it needed to be done.

My week didn’t turn out quite like I had hoped.  Every thing I tried to do seemed to take four times as long and nothing went right.  The cans of paint for the living room didn’t match and the floor wouldn’t go back together.  I was close to tears by Monday evening and ended up having to make another trip to the home improvement store to have them remix the paint and buy a new floor.

Believe it or not, even the third can of paint didn’t match. (Only someone as lucky as me would take the “mistake” can back to be matched!)  Still, after bumps, bruises and a few tears, the living room was finished.  I still don’t have everything put back or things on the walls, but at least we can sit and I didn’t bring the kids home to everything piled in the dining room!  Rob would have really been flapping at that, while Casey would have giggled because I messed things up.

As much as they love camp, they are happy to be back home.  Rob has asked for Hopewell 15-20 times today, just making sure he gets to go tomorrow.  Casey has happily refolded her huge collection of socks for hours and both are happy to have their iPads back.  Card stock has been ripped and they got to spend time yesterday with Mandy and Cory.  Later today, they are going to Grandma Rose and Grandpa Mack’s house and they are both excited about that.

Life has returned to the normal we know.  It may not look anything like your normal, but that’s okay.  We do our own normal and it works for us.  I didn’t get as much free time as I had planned while they were gone, but at least they weren’t here for the mini-disasters!   🙂   And they had so much fun with their old, both new and old ones.  Thank you again, Camp Echoing Hills, for giving Casey and Rob a week of fun and for giving me a week to do what needed done without the added stress of autism!

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Summer Camp Time – How to Spend the Quiet Time

In about an hour, I’ll be loading the kids and all their stuff into the car and heading to Echoing Hills for their week of summer camp.  Casey can’t stop giggling, while Rob just keeps asking for camp.  And autism mom will be wondering what to do first.

They are packed and ready to go.  Casey finally made the biggest decision of the summer and chose Bert to go to camp with her.  She was trying to choose between Grover and an Elmo that haven’t gotten to go, yet, but apparently, at the last minute, she decided Bert needed to get away.  Her eyes were twinkling as she packed him carefully into her suitcase with a soft towel to keep him safe.

Last night, I heard Rob in his room, but I couldn’t tell what he was up to (and isn’t that scary, autism parents??).  When I went to check, I found him carefully packing his clothes.  He was folding each item neatly and putting all of his pants in one corner of his suitcase and his shirts in another.  I was so proud of him!  He even thought to put his towels and underwear in, too!

It was so cool to see him take such an active interest in packing.  Usually, he just makes sure I pack his favorite clothes (is it terrible that I wouldn’t mind if some of them didn’t come home?  🙂  )  But, if he lost something precious to him out there, I’m sure it would cause anxiety the next time, so I guess I’d just better hope it makes it home.   I’m sure he was packing for two reasons – because he was excited and to make sure I didn’t put any new clothes (God forbid!) in his suitcase.  He wants his comfy stuff and that’s all we packed.

I know lots of families take advantage of the kids being cared for for a week and take trips, but I like being home.  It sounds silly, but it’s so cool to not have to think about helping with baths/showers for a few nights and to watch TV at 8:00 if I want (that’s usually bath time)  I can go to bed at 9, if I want and not need to wait until they go to sleep.  I can have some junk food without them trying to sneak some, too.  (By the time I have a snack, they have already had theirs and I really watch how much they eat)

So, this week, I’m painting the living room and fixing the floor.  I could do it with them here, but it’s so much easier not having to worry about Rob’s anxiety when he comes home to discover Mom has destroyed the living room and moved everything.  I can take my time and not kill myself trying to get it done in one day while they are at the workshop.  Anyone else know what I mean?  🙂

As happy as they are to go, I have mixed feelings every time.  I know they are happy and having a great time and I do enjoy the break from autism, but they are such a part of me, that sometimes, it’s hard to separate us.  Maybe that doesn’t make much sense, but being a autism mom is me – the main thing in my life.  Not having someone to take care of is odd to me.  Enjoyable for a few days, but then I’m ready to get back to our routine.

The week will go so fast, but I’ll be one of the first moms to be at the camp Friday.  I can’t wait to see them.  I will wonder on the drive out if they will react like usual – Casey running for a hug with a big smile and Rob barely acknowledging me until we get home, when he leans his forehead to mine and smiles his sweet smile.

This year, I have a better understanding of what they will be doing doing the week.  I’ve volunteered at the camp on Mondays this summer and I’ve seen what they get to do.  I’ve always heard about it, of course, but seeing is even better.  And I’ve seen the same counselors week after week, happily helping whatever group is there that week.  (Each week is a different group – children, teens, young adults, older adults, autism, etc)  I’ve seen them go without their own lunch to follow a wanderer around the room to be sure that camper is safe.  I’ve seen them help campers eat and laugh at the silly jokes of others.

I’ve seen them dance silly dances because a camper asked them to.  I watched them carefully wipe faces of older adults and children.  I’ve seen them deal with difficult behaviors with a smile on their face and comfort a homesick camper.  To be honest, I could be a counselor for a week, but I’m not sure I could do it for the whole summer.  Maybe because care taking is a full time thing for me, while for the counselors it may not be.  Either way, the love I’ve seen makes this summer even easier to drop them off.

It also helps that Mandy works at the camp, now.  If there is an emergency, she can be with Casey or Rob in minutes.

So I’ve been thinking about what else I want to do during the week.  I’ve got my plans for the living room laid out, but I want some fun, too.  Walks with Blue and my friends, maybe?  Maybe I’ll read a book all day.   Maybe see a movie – or just watch a movie at home in my PJ’s.  Maybe I’ll go to the pool with my friend and not have to worry about watching the kids – can you imagine just sitting on a chair and catching some sun instead of chasing kids?

Maybe I’ll eat popcorn for supper one night and French fries for lunch.  Maybe I’ll sit in the porch swing for hours and watch the birds.  Maybe I’ll take a nap every day and stand in the shower for as long as I want.  Maybe I’ll get groceries.  Maybe I’ll write.  Maybe I’ll finally catch up on the list of stuff I wanted to get done this summer.  Maybe I’ll spend the week crafting.  Maybe I’ll go through their clothes and get rid of what doesn’t fit anymore.  Maybe I’ll just watch the ceiling fan blades go around.  The whole plan right now is to not have a plan.  Walks early in the morning and workouts in the afternoon, maybe?  Yoga on the patio as the morning warms up.  Who knows?

Casey is still giggling and saying camp every few minutes.  She apparently is worried that I’ll forget that today is the day!  The day she has been waiting for since last July.  They both love the weekend respites, but summer camp is extra special.  She is asking for certain counselors and talking about the talent show.  Rob is just watching me and waiting for me to say those magical words “It’s time to go!”

** Update – when I said it was time to go, Rob ran to car and refused to get out for a picture so Casey got as close as she could.  😊

When I was leaving, Casey barely looked up from her color by number, but Rob stood up, gave me a real hug and said “Wuv you, Mommy Jen” all before I said anything to him.  I had tears in my eyes – first time he has ever said that unless he’s repeating what I said to him.  💙💙💙💙

 

 

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Autism and Being Thankful for Little Things

Autism and Being Thankful

Thanksgiving is only a few days away and for the last two weeks, Casey has been patiently reciting everything she wants to eat that day – turkey, mashed potatoes, cranberry sauce – and on and on.  When you ask what she is thankful for, she is as likely to say Elmo as family or friends.  And that’s ok.  Sometimes, the things I’m thankful for may not make sense to anyone else, either.

For several years, I was thankful for unlimited texting and minutes on my cell phone.  Mandy and Cory were in Texas and we missed them so much.  It helped Casey and Rob to hear their voices.  Skype was another thing to be thankful for – the pictures of Casey and Rob smiling when they saw Mandy are priceless to me.  The absolute love they have for Cory and Mandy disproves the whole “people with autism don’t feel emotions” stuff.

I am thankful for camp weekends.  I just picked the kids up from Echoing Hills.  They had another great weekend there and enjoyed going to the local Lions Club Minstrel Show (who would have ever imagined Rob would like that?).  When they saw me, they smiled their beautiful smiles and leaned for hugs.  I got tears in my eyes when I saw a volunteer from the camp to go the car and say goodbye to the kids and ask for hugs.  The volunteers and camp employees are blessings to our family – I just hope that they know how much we love them!

I am thankful that, despite terrible meltdowns and way too much head-banging, Casey never got hurt.  She put her head through two glass windows  and never got a scratch.  I am thankful that my “no fears” son never did any permanent damage, despite stitches, broken bones and a helicopter flight to the children’s hospital.  I am also thankful for hair coloring – I am not ready for all those gray hairs to show!

I am thankful for the friends and family who support me and the kids.  Some, I haven’t seen for years and some I’ve never met.  But, thanks to the internet and Facebook, I’ve met people who know exactly what I mean and understand without judging.  I know many families who pull apart when a person has special needs – my family is close and I lean on all of them (and that includes the ones who live far away!)

I am thankful that Mandy doesn’t resent her sister and brother.  Growing up between two siblings with autism wasn’t easy for her, but she is still their biggest defender and one they run to when they need something.

I’m thankful for a best friend who lets me vent, cry on her shoulder or threatens to kick my butt when I need it.  Casey and Rob love spending time with Tracie – and ask for her when mom says no!

I’m thankful for a job and co-workers that support us.  When there is a problem with the kids, I’m able to go deal with it without repercussions at work.  My co-workers know that sometimes, I just need a hug and they are always willing to do that for me.

I am thankful for the day hab where the kids spend their days.  They enjoy being there and have made friends.  I am also thankful for the staff that doesn’t show their frustration with Rob or Casey when they are having a bad time.  (Rob’s obsession with paper clips is also causing my gray hair!)

I am also thankful for Sesame Street, ipads, Mighty Morphin Power Rangers, wind pants and muscle shirts, heavy blankets, head phones, Wizard of Oz, Willy Wonka, legos, color by numbers, cardboard, bubble wrap, slippers, wonderful doctors, coloring books, crayons, clay, socks, ice cold coke, snickers bars, dark chocolate and cheese crackers.  Without these, our days would be very long!

Sometimes, life with autism makes it really hard to find anything to be thankful for.  Between sensory issues, meltdowns, therapies, doctors, school, work and home, sometimes, getting through the day is all you can think of.  Been there, done that.  Sometimes, downing a coke is all that kept me going.  I know it isn’t good for me, but I figure it’s better than other options.

Maybe you can be thankful your child didn’t get hurt during their latest meltdown.  Be grateful for the silence when they finally wear themselves out.  Be thankful that they are willing to eat something – even if it is the same things day after day.  When you are exhausted, look for the smallest things to give you hope and strength to go on.  Be thankful that no matter what, your child loves you more than anything – even if they can’t say the words.  Look in their eyes – you will see it.

One last thing I am very thankful for – for the opportunity to share our lives with each of you.  My greatest hope is that readers can find laughs and hope in our journey- to know that they are not alone and that life does get better.  Only through sharing awareness can we get the acceptance our kids desperately need.

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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!