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How to Explain Death to your Child with Autism

How to Explain Death to your Child with Autism

Telling your child someone they loved has passed away is never easy.  When that child has autism, it can be even more difficult.  I’ve had to tell the kids before about a death, but those were elderly people.  Today, they had to hear that their grandpa was gone.

They knew he had been sick and in the hospital.  Casey has been talking about Grandpa Bill and Heaven for a few days, but last night, she was saying he was going.  She always smiled when she said it.  She often smiles or giggles when she is nervous or isn’t sure how to react.  But then I realized she was smiling because she was happy for him.  She knew he was going to see Grandpa Jones (his dad) in Heaven.

I got choked up.  When their great-grandparents passed away, we talked about Heaven and being with Jesus.  During our lessons for church, we talked about Jesus and how good people go to Heaven when they die.  She firmly believes in Heaven and Jesus, even if she can’t go there.  It’s a real place to her – like the state she lives in.  She may not completely understand death, but she isn’t scared or unhappy about it.

Rob hasn’t said much, but he rarely does.  He knows about Heaven, but I think he sees it as a place like Oz.  It’s beautiful and some people go and others don’t.  He will ask for Grandpa Bill at times, I’m sure – probably when he visits his house.  He is a little anxious today, but I don’t know how much is from Grandpa and how much is the weather and the long weekend.

Casey is laying on the couch now reciting everyone she knows how has gone to Heaven – Bonnie, Grandpa Hopkins, Grandma Hopkins, Grandpa Jones, Bingo.  She is laughing and giggling.  She isn’t crying, but I am.  She asks “Mommy sick?”  I tell her I’m not sick, just sad.  Now, she is confused, because Heaven is a good place.

So I tell her again that yes, Heaven is good.  I tell her I am sad because I miss the people who are there.  She says “talk?”  Yes, Casey, I want to talk to them again.  Now she says “Talk!” – not a question, but a statement.  Because, when Casey and Rob want to talk to someone, they talk.  I can’t count the number of times I’ve heard one or the other talking to Grandpa Jones or Grandpa Hopkins.  It is so simple to them.

I can’t tell you exactly how to explain death to your child with autism.  The best advice I can give is to say to know your own feelings before you begin.  If you believe in Heaven, then share that with them.  If you have other beliefs, then share those.  And get ready for questions you may not want to answer when you are upset yourself.  The questions may not end for months.

I would caution you not to use phrases like “went to sleep” or “gone away.”  People with autism are so literal that hearing someone went to sleep and will never be seen again is just asking for sleep issues.  Would you go to sleep if you thought you would disappear?  I doubt it.  Avoiding sleep could become an obsession.  The same with saying “gone away” – your child may wonder if every time they can’t see you if you have left forever.

Tell your child the truth.  They may not understand the concept completely, but at least they won’t develop other issues because you took the easy way out.  Tell them what you believe and let them take the lead about questions.  I didn’t take Casey or Rob to any of the funerals and I won’t.  I want them to think of Grandpa in Heaven, not laying so still in a building they drive by all the time.

I am in no way saying my way is the right way.  You have to do what’s right for your child and your family.  Much of it depends on your child’s abilities.  Some people with autism understand death and can handle funerals.  Casey and Rob are not those people.  They won’t understand why Grandpa doesn’t talk to them.  They won’t understand why they never go back to that place to see him.

Explaining death is hard for anyone.  There are books for you to read to your child if that would be easier for you.  Before you do anything, please decide what you believe and follow that belief.  If you are confused, you will never be able to help your child through this difficult time.

Don’t be upset if your child has little or no reaction to losing someone they love.  That doesn’t mean they didn’t love that person – it simply means they don’t understand.   Or maybe they understand and believe in a happier place where we will all be together some time.  Don’t try to force your child to show emotion.

If attending the funeral will be too hard, find someone to stay with your child.  You need time to grieve without trying to take care of your child, too.  You will become upset quickly if your child doesn’t sit quietly in the service.  Save yourself some stress and leave them home.  Or find someone to stay in a quiet room at the funeral with them.

Let your child see you upset.  Let them know it’s ok to cry.  Or laugh or whatever emotion they feel.  Be ready for more behaviors or anxiety.  Make sure you tell their teacher or aides what has happened.

As for me, I’m going to try harder to follow Casey and Rob’s lead.  I’ll try harder to keep the simple faith that no matter how much I miss someone, they are in a happier place and I will see them again some day.

 

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Autism and Celebrating Another Birthday

Autism and Birthdays

It’s hard for me to believe that tomorrow, my “baby” will be 25!   Unlike Casey, Rob doesn’t seem to care about his birthday.  When asked what he wants, his answer is always “presents.”  Trying to ask for specific things, all the while trying to use a statement (tell me what you want) instead of a question is difficult for both of us.  But, that doesn’t matter because it will his day and I’ll do everything I can to make sure he knows how special he is.

When I think back to when the kids were little, it’s amazing to me just how different they were.  It seems I should have seen the autism in Rob earlier.  I was concerned and even talked to Casey’s neurologist and our family doctor about him.  They both agreed with his history, I needed to wait before I panicked.

For the first three years of his life, Rob managed to end up in the ER every six months or so.  As soon as I would get a bill paid off, he would end up there again.  He tumbled as a toddler and split his forehead open – stitches.  He had pneumonia. He fell down the basement steps and got to ride on a helicopter to a children’s hospital (he wouldn’t wake up).  He had a seizure after getting a set of vaccinations.  He jumped down the steps and broke his collar bone.  Need I go on?   I often said that had he been first, there wouldn’t have been another.

So, when he didn’t talk much, no one was very concerned.  He didn’t have routines that he needed to follow.  He didn’t have sensory issues when he was a toddler.  However, since he was language delayed, our school district put him in their preschool when he was 3.  It was the same one both girls had gone to and he was so proud to be there.  He played beside other kids, but rarely played with them.

But, he followed Mandy everywhere at home.  She would tell me what he wanted, so he never needed to use his voice.  She was the ultimate big sister to him and he still leans on her.  The years she was in Texas were especially hard on him.  Casey knew Mandy would come home and would watch the calendar for those dates.  He just knew she was gone.

Since he didn’t show many signs of autism, we waited.  He was going to preschool and getting speech.  There wasn’t much I would have done differently had he had a diagnosis.  When it was time for Kindergarten, though, the signs were becoming more obvious.  He went to our county board of DD Kindergarten and had a one on one aide that he adored.  I also made an appointment with the neurologist for him.  It didn’t take the doctor long to agree that he had autism, too.

I wasn’t surprised.  I didn’t feel much of anything, really.  It was what it was and a diagnosis didn’t change any of us.   It wasn’t till a few days later when Casey had one of her hours long meltdowns that it occurred to me he may start doing that, too.  And I cried.  I wasn’t strong enough to handle two screaming, kicking kids.

God was watching over me.  While Rob does have his issues, meltdowns have never been one of them.  He rarely gets angry and when he does, he tends to cry (like his mom!).   Rob was happy to go to school with Casey and his teachers were awesome with him.  His aide, Beth, went with him and stayed with him through elementary school.  He still talks about “My Beth” – that’s what he always called her.

Sensory issues were Rob’s biggest obstacle.  He hated most shirts, but jeans and tennis shoes were no problem.  He wore a hat everywhere he went.  He had hunter ear protection that he wore through his school day to add pressure to his head and block unexpected loud noises.  He had a huge platform swing in his classroom that he used all of the time.  Beth discovered while he was laying in his swing, he could spell and read and recite math facts much easier.

When he became stressed, he squeezed his jaw or flapped at his ears.  He still does the flapping, but now it’s by his jaw and it doesn’t happen often.  In some ways, his sensory issues have gotten better.  He is willing to try new foods, new places and new clothes, for short periods of times.  In others, it’s become harder for him.  Crowds bother him more.  Being hot is extremely uncomfortable.

Rob is a grown man now, but that little boy is still inside him.  He still loves Dr. Seuss and his Power Rangers.  Willy Wonka and The Wizard of Oz will always stop him in his tracks.  He still builds trees and power poles with his Legos.  “Where did Robbie go?” will always get a smile and giggle from him.  He is still Mom’s boy and still leans on Mandy.

He doesn’t like to get dirty like he used to.  He hates anything gooey on his hands.  He doesn’t like to wear jeans (though part of that is trying to find a pair that fits well!) and doesn’t always have a hat on.  His interests are not those of a grownup, but he is a happy guy.

To him, the best part of his birthday will be that Grandma Rose and Grandpa Mack, Mandy and Cory will be here and we will have Long John Silver’s for supper.  He’ll grin as we sing to him and blow out his candles.  He’ll open presents and say thank you.  And then he’ll be done with being the center of attention and disappear into his room.

I know many of your reading this have little ones.  I know you have days when you wonder how you can keep going because you are so darn tired.  I had those days and I can tell you, it does get easier.  It may not be a perfect life, but no one has that.  You will always have hard times, but you are strong enough to handle it.

I didn’t always believe in myself, but we are making it, day  by day.  I can sit and remember how far the kids have come and some day, you will do that same.  Your journey won’t look like ours at all, but it will still be a good one.  The ups and downs average out – even when the downs seem to never end.  Always believe in yourself and your child.

As for me, I’m going to go wrap Rob’s presents and hope he likes them.  I’m going to look at his scrapbook and know that little boy is still around – as cute and as ornery as ever.  I’ll be grateful he doesn’t climb to the roof and jump anymore and that he finally seems to have a small awareness of danger.  Some day, you will look back and be proud your child has come just as far.

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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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Autism and a New School Year

Autism and a New School Year

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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Autism and Sheltered Workshops

Autism and Sheltered Workshops

I just read another post that stated every sheltered workshop and day hab center needs to close and everyone who attends should find a “real” job.  I’m not a happy mom.

I understand the reasoning behind possible laws stating every able-bodied person should be working and earning a minimum wage.  Don’t they think that I would be pushing for that for my kids if I truly believed either one would benefit from it?  Casey and Rob need Hopewell – it really is that simple.  Does everyone that goes there need it?  No, of course not, but everyone has different abilities.  I just don’t understand why that is so hard for some people to understand.

Casey might…  maybe… possibly… be able to go to a “real” job – with supports, for a short amount of time.  If she wants to and is in the right mood and doesn’t decide that going to see Norma (a senior citizen she has developed a special friendship with) would be a better idea.  Casey doesn’t care about money.  She understands she needs money to buy things, but not where money comes from.  (Mom’s purse!  How it got there, she doesn’t know or care.)

Rob could not, at this point in his life, handle a job.  It’s that simple.  He doesn’t like noises, crowds, strange people or a different routine.  His anxiety levels are finally leveling out (and by that, I don’t mean it’s gone – I mean he isn’t humming, flapping, squealing and stealing paper clips all day long!)  He could not do it.   However, if any politician wants to prove me wrong, by all means, message me.  You can take him for a day – or a few hours – or an hour – whatever you can handle.  Ask the people who work with him every day what they think.

Rob doesn’t care about money, either.  The only thing he wants is to have 3 quarters in his pocket every morning when he leaves.  He never spends them, just likes having the ability to buy a pop if the need arises.  He understands that money is needed to buy things, but he doesn’t care where it comes from, either.

I do understand that there are many people out there who desperately want a “real” job and to make their own money.  There are people who need that job to live on their own or help support their families.  For those people, keep fighting!  Demand your services and what you need.  But, please, do not lump my kids into your needs.  We have our own needs.

Sure, it would be great if Casey and Rob were making money and could pay for the things they want or the places they want to go.  Who wouldn’t want a little extra money?  But it isn’t going to happen any time soon.  Maybe in a few years, they will both want jobs and I’ll move mountains to see that they get what they want.  Until then, don’t take away the place we all need.

Neither of the kids have brought home paychecks in months.  But – they are happy!  They are going places with their friends.  Rob is even interested in exploring new places and new experiences.  Casey can volunteer to her heart’s content.  She can have breakfast with the “girls” club (that Rob always seems to invite himself to!) and paint rocks to make others happy.

She can visit the nursing homes and see Norma or play wii or sneak a drink of pop.  They are going swimming with friends.  Rob will be going back to aquatic therapy soon.  All of this and more is available to them because of the workshop they attend.  I couldn’t do it for them.  I can’t take Casey every where she wants to be and leave Rob at home and he doesn’t want to go.  It just doesn’t work.

What about my job?  As much as I wish I was rich, I’m not and a job is a necessity.  If their lose their day hab services, what am I supposed to do?  They can’t be alone and I can’t afford to pay (their waiver will pay for some hours, but not nearly enough).  So where does that leave us?

I do understand what people are saying about minimum wages and the need for people with disabilities to be accepted into our communities.  I fight for that acceptance every day.  What I don’t understand is why it has to be an “all or nothing” situation.  Why do sheltered workshops or day habs have to disappear so people can have jobs?  It just doesn’t make sense to me.

We stress all of the time about looking at a person’s interests and abilities when making a plan for them, but someone who has never met my kids can make a major life decision?  Yes, please, no fanks as Rob says.  We would never take away a person’s therapy or medication without something to replace it – why in the world does taking away their secure, happy place make any sense?

My prayer is that all of the talk floating around is just that – talk.  Rumors or half-truths that have no bearing.  But, I hear about sheltered workshops closing and families being desperate for help.  I know they are expensive to maintain and finding quality staff can be an issue.  Casey and Rob need Hopewell – and so do I.

Keep fighting for what your family member needs.  Never, ever stop doing that – but just keep in mind that our needs are different.  This can’t be a “one size fits all” decision.

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Autism and the Difficulties in Speaking

Autism Verbal Difficulties

It happened again.  A day that could have been so much fun for Rob was ruined, simply because he couldn’t ask for help when he needed it.  As much as he is able to talk, there are times when his autism and the verbal difficulty he has flare up and he gets frustrated.

Rob and Casey were going swimming with friends from Hopewell – the workshop they attend every day.  I was already a little concerned because they were going to a different pool – one that was just a pool and had none of the activities that Rob really enjoys (mushroom fountains are his absolute love – all the water pouring directly on his head is heaven to him!)

He was so excited to think about going swimming.  I’m sure he was a little disappointed that it was a new pool, but he jumped right in the pool.  Staff told me he got right back out and soon began pacing and yelling.  Tory tried to help him, but he was unable to tell her what he wanted or needed.  He wouldn’t even talk to Casey.

I got a message that he was upset and decided to go get him.  I didn’t want his anxiety to ruin the fun for the others in the group.  When I got to him, he started asking “get the van?  get the van?” so I knew his anxiety was sky high and not likely to come down any time soon.  He didn’t want to leave with me, but he didn’t want to go in the water, either.  I think he probably did want to swim, but since he wouldn’t, I told him to grab his stuff and we would just go home.

As we were driving home, Rob had his hand laying on the open window of the car.  That’s the only way I knew what really happened to him at the pool.  I saw the bee sting.  When I could pull over, I asked him to show me his hand.  “Let me see!  Let me see!” he said and held his hand out to me.  When Rob is sick or hurting, that is how he asks for help.

The stinger was out, but the hand was red and slightly swollen.  I noticed he sounded congested when I picked up him, but thought he was having sinus issues.  Nope – he was having a reaction to the sting.  He and Mandy used to be severely allergic to insects, but he hadn’t had a reaction in a long time.  He had gotten stung at the pool and he simply couldn’t tell Tory he needed help.

Instead, the pain got him worked up and he paced.  And he yelled.  And his anxiety grew.  All because of autism and verbal difficulty.  Can you imagine being in pain and not being able to tell anyone?  Not being able to ask for help?  Imagine the frustration and anxiety you would feel.  And I hated autism again for ruining his fun.

Had he been with Mandy or I, he probably would have said “Let me see” and we would have known something was wrong.  He just won’t (or can’t) say that to others.  So, because of autism, he suffered.  And I thought about the other times he was unable to ask for help when he needed it.  When he jumped down the steps and broke his collar bone.  When his foot issues start to flare up (if I can get ibuprofen in him early enough, the pain doesn’t get too bad).  When his head hurts.  And I think it just isn’t fair!

I know – life isn’t fair.  But it’s so hard to watch someone you love in pain because of verbal difficulties.  He can say so much of what he needs, but not always.  Sometimes, he just yells and gets anxious.  Sometimes, he cries.  Sometimes, Casey screams.  And I’m left trying to read their minds and find the issue.

Autism has taught me so much.  I am a better person for loving kids with autism.  I have met so many amazing people and learned about myself.  Autism has also taken things from me.  For me, the worse thing taken is the kids being unable to ask for help.  When I do finally realize the problem, the guilt comes.

Why didn’t I figure that out quicker?  How could I not realize they are in pain?   My parents tell me that’s crazy – it’s impossible for me to know everything about them.  My head understands that – my heart feels the guilt.  And you know guilt is harder to get rid of.

I’ve learned to “read” them – just as every other autism parents has learned.  I can tell by their eyes if something is wrong, if they are sick, if a tantrum is coming.  I can tell when they are happy or sad or mad.  I can see Rob’s anxiety and when Casey is getting overwhelmed.  I know all of this, but I still feel guilt when I don’t know it soon enough.

Thankfully, Rob’s hand is fine.  While he did cough a little, he didn’t have a bad reaction to the sting.  He will probably never go back to that pool as he will always associate it with a bee sting.  But, that’s ok.  We’ll go somewhere else.  Casey will be happy going anywhere.

We’ll always struggle with verbal difficulties.  I will be thankful for what they are able to tell me.  I will keep asking questions and hope to learn more about each of them.  We’ll keep hugging and laughing.  I’ll read stories to them and enjoy the giggles when Elmo saves the day again.  That’s what parents do.

And I’ll try to push the guilt away when I don’t know what’s wrong.  I’ll try to remember the good things about autism when I’m so sick of it I could scream.  Try to do the same.  Life isn’t always about bee stings and ruined pool trips.  Sometimes, it’s bear hugs and twinkling eyes and McDonald’s fries.

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Circle of Autism Mom Friends

Autism Mom Friends

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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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!