Tag: autism parents

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Autism and Respect for Others

Autism Respect

Today was a good day.  Our whole family gathered to celebrate my parents’ 50th anniversary.  As we sat and laughed together, I couldn’t help but watch Casey and Rob as they enjoyed the day, too.  I was even more proud to hear them say “yes, please,” “no, thank you,” and “excuse me” as needed.

It may seem like respect and manners are the last thing our kids need when they have so many other issues.  I completely disagree.  I can’t count the number of people who have complimented me over the years on how polite all of the kids are.  It wasn’t easy, but it wasn’t any harder than teaching them other sentences.

All kids model what they see.  If you use manners and show respect to others, your children will follow your lead.  When Casey was little and just learning to talk, we used PEC cards to make sentences for her to practice.  “I want a drink, please.”  “I want a cookie, please.”  It was no big deal to add please to her models.

When I started using sign language with her, I signed please and thank you and she followed my example.  She still signs please at times when she is talking.  Rob didn’t use the PECs cards until he was older.  He was more willing to verbally mimic what was said to him.  I always added please and thank you.

I insist they answer when someone says “hi” to them.  Is it easy?  Of course not, but they need to show respect for others.  Many times, I have to say “What do you say, Rob?” when someone says “Hi” to him.  I don’t let either of them ignore friendliness.  Saying “Good bye” and “Thank you” when they leave somewhere is not negotiable.  They are capable of saying it.  Again, I often have to remind them, but that’s ok.  That’s what moms do.

You have to remember that I started all of this when they were young and I still have to remind them.  Having autism is not an excuse for being rude.  Is it a huge deal when you are trying to handle so much else?  Of course not.  But – you can model the words for your child.  Show them the signs for please and thanks.  Or give them PECs cards to flash.

Your child wants to feel like they belong, even when their own little world is so important to them.  Show them respect – let them see the way you act and they will model it.  In their own time, of course.  Teaching manners isn’t an hour long project.  It is a lifetime of reminders and verbal cues.

Manners aren’t just polite words.  Manners and respect include sharing and taking turns.  Your child will probably find these incredibly hard.  Rob will share some things easily – others are his and we have to work on sharing.  Casey is less likely to share what is hers.  Constant reminders do little good some days, but she is never mean when asked to share.  She just says, “No, thank you” and turns away.

Taking turns and sharing are valuable parts of being a friend to others.  You don’t want your child’s inability to do either scare away potential friends.  The funny thing is, you also have to teach them not to always give in to others.  What a fine line to walk.  Share, but not always.  No wonder kids get confused.

I often have to remind Casey and Rob to say “excuse me” when needed.  At times, the words come out spontaneously and I cheer!   They are not perfect with their manners, but we keep at it.   Sometimes, their manners come out at funny times.  Last year, Casey was having a meltdown and I told her to go in her room until she could get control.  She screamed “No thank you mommy!” at me.  I had to laugh, which angered her, but she calmed down quickly when I couldn’t stop laughing at her.

It seems so many parents are letting their kids get away with no manners and no respect for others.  We all see it in stores – children who demand things and threaten to scream if they don’t get it.  No respect for the word “No.”  I refused to let any of my kids act like that.   Casey had a few meltdowns in stores when she was little.  Usually, I could see it coming and we left quickly.  Of course, her meltdowns were sensory issues and not because she wasn’t getting what she wanted.

For Mandy and Rob, a mean mom look was usually enough to remind them to behave.  Casey often needed to hear words as she rarely looked into my eyes.  I think that had I had any clue what autism really was when Casey was little, she wouldn’t have come as far as she has.  Autism wasn’t well known 27-28 years ago.  I remember being grateful she wasn’t “sick” when we got the diagnosis and thinking “How bad can it be?”  (yes – I have learned many times over just how bad it can be!)  I was young and naïve.

But being naïve also gave me a strength and a stubbornness I may not have had.  I had no clue they may never be potty trained until she was already trained.  I didn’t know she may never talk, until we had already found ways to communicate.  I never thought about manners being something they wouldn’t need until I had already begun to teach them.

Please – don’t assume your children can’t be taught or that they don’t need to learn manners and respect.  Everyone needs these.  Your children may take longer to learn or need to be shown in different ways, but they can learn.  They may need a communication device or another way to say “hi” but it can be done.

I know you are overwhelmed at times and teaching your kids to say please and thank you and way down on your list of things to do.  You don’t need to make this a priority.  Just model the words and your child will follow your lead – in their own time, in their own way!

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Autism Mom is Tired – Why Taking a Nap Won’t Help

Autism mom is Tired

Some days, I’m tired.  Like super, can’t think about moving off the chair, don’t care about anything tired.  It’s not just a “take a nap and feel better” tired.  It’s a tired of worrying, thinking, planning, handling things tired and no amount of sleep will help that.  And I know every one of you knows exactly what I mean about autism tiredness.

And I’m one of the lucky ones.  For many, many years, Rob couldn’t sleep through the night.  While he just played in his room (after sneaking a snack some nights) I heard him and often laid in my room listening for him to go back to sleep.  Most nights, he would open my bedroom door, then Casey’s – and he never shut them quietly.  I think he was checking on us.

Finally, he has either matured enough to sleep or we’ve found the perfect bedtime routine and meds to help him sleep.  Though there are nights when it’s late before he sleeps, most nights, he is asleep by 10:30 or so and sleeps till I have to wake him up the next morning.  Casey has an occasional night that it is hard for her to go to sleep, but those are finally rare, too.

So even though I get to sleep each night, I’m still tired.  I’m tired right now.  I spent three hours today taking an online continuing education course for the kids’ guardianship in addition to everything else that needs done on the weekend.  I’m ready to watch TV and relax.  And Rob is “Singing.”

By singing, I mean he is repeating the same sounds over and over in a loud voice and as been for the last hour.  There isn’t a room in the house that he can’t be heard in.  His iPad is on his lap – he has a pile of magazines and still he sings.  Every time I go in to ask him to use a quieter voice, he says “GET THE VAN!” in the same loud voice.

Yep, he is still saying that.  It’s the first thing he says to me every morning.  And every time he sees me.   When he comes home from the workshop or gets out of the shower.  Every time he is in the car with me, I hear it over and over.  Last week, we drove to a park less than 5 minutes from our house and he said it almost 50 times.  I’m tired of it.  I wish he could at least use a quieter voice.

My kids are the most important people in my life.  I feel so bad that I get tired of autism.  I’m tired of packing the same things in their lunches.  I’m tired of helping them shower every night.  I’m tired of wondering how people treat them when I’m not around.  I’m tired of wondering what the future will be like for them.  I’m tired of second guessing myself for the decisions I make.

I’m tired of his picky eating and her eating everything she can get her hands on.  I’m tired of having to adapt every plan we make.  I’m tired of financial worries for them.  I’m tired of people telling me to take a nap and feel better.  I know they mean well, but while sleep does help a little, I’m still tired.

I’m tired of hiding that I’m tired.  I am supposed to be strong and capable, not tired.   People tell me that all the time – how they could never do what I do.  I don’t believe that.  I think we all can do what we need to do.  It’s just exhausting.

I know everyone of you reading this has days like this.  It’s hard to be “on call” at all times – even when you are away from your child, you are still thinking and planning and wondering.  A break from a special needs child is wonderful, but it is rarely truly a “break.”  You are still worrying about them.

What I’m most tired of, though, is feeling guilty about being tired of autism.  Autism has brought a lot of good into my life.  I’ve learned so much – about disabilities, about friendships, about who I am.  Autism has given me many opportunities that I would have never had.  I’ve learned patience, tolerance, acceptance.  I’ve learned to defend myself and my kids.  But, I still feel guilty for being tired of it at times.

I worry that people will think I mean I’m tired of my kids or that I’m not proud of them.  That is never my tiredness.  I am so proud of all they have accomplished and can’t wait to see what else they do with their lives.  I’m never tired of being with them – I just get tired of autism’s “quirks” sometimes.

When you get that tired, please take a break.  Find someone you can trust to stay with your child – even if you are just going in the other room and take a long, hot bath.  Try to stop thinking about the future and all of the “what-if’s” that we can’t possibly know.  Believe me, I know how hard that is to do!

Think about all of the amazing things your child has learned to do – and remember that you worked just as hard as your child.  Every little accomplishment should be celebrated!  Shout it from the rooftop when your child tastes a new food or wears a new shirt.  You both deserve the applause.  Remember – those accomplishments are why you are tired!

Be tired of autism at times – that’s ok.  Try not to feel guilty about being tired of it.  (yes, Mom – I am still working on that part!)  Know that you are not alone and you are doing an amazing job raising your children.  Tell everyone when your child reaches a new goal.  Jump, clap, shout for joy!  Those will be the times that will help you the most when you are exhausted!

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Autism and Your Child’s Safety

Autism and your Child's Safety

I’m sure every one of you has safety precautions in place.  Your doors stay locked for the wandering kids.  Your windows are permanently closed to prevent falls.  Your cupboards are latched, toilets are closed, cleaners locked away.  Your home is as safe as autism will let it be.  But have you thought about your child’s safety in the event of a car accident?  As you travel?  What about a house fire or natural disaster?

Where I live, tornadoes are possible but rare.  I had always wondered if the weather turned terrible at night if I could get both kids to wake up enough to get to the basement with me – and would they stay there?  A few years ago, our summer was one threat of tornado after another and terrible thunderstorms.  The first time the tornado warning sounded, I jumped up and ran to Casey’s room.  She is a deep sleeper – one that rarely moves during the night and the one I was most worried about waking up.

She was sound asleep, but when I ran in and started shaking her, she woke right up and got out of bed.  Mandy was on her way from her room as I walked out of Casey’s and she took Casey and the dogs to the basement as I went to get Rob.  He woke easily, grabbed his blankets and went to the basement with me.   The kids crashed on a mattress as I watched the TV and cried with relief that I would be able to get everyone safe during a weather emergency.

Every time I had to wake them up that summer, they jumped right up.  You need to consider what you will do if your child won’t move fast enough and you can’t carry them.  Make more than one plan in case the first one doesn’t work like you think it will.  Consider purchasing camping lanterns for light as lit candles are too dangerous for our kids.  Make sure you have water and snacks in your safe area.  Think about packing a backpack with medicines and fidgets to help calm your child while you wait for the storm to pass.

In my case, my first plan was to try to wake Casey first, then go to Rob.  If she struggled to wake up, I was going to take him to the basement and turn a power rangers movie on – I knew he wouldn’t leave the movie to come looking for me.  If neither would wake up, I was going to toss water on them.  Yes, I know that sounds mean, but I knew it would wake both of them up enough for me to get them moving.

Being in a car accident is one of my biggest fears.  If I am unable to help them, I don’t think either will try to leave the car.  I desperately hope I am wrong, but I just don’t think they will.  I have stickers on my windshield stating that there are occupants with autism who may not respond as expected.  I have information in the glove box for each of them – contact info, name, address, their diagnosis and what they might possibly do.

My list includes the fact that Rob may run away and that neither understand danger and may wander into traffic.  It says that both have moderate autism and that communication is difficult.  Casey may be jumping and screaming, while Rob may be pacing and yelling.  I want every first responder to know what they may be doing and to not try to touch them.  The kids need to be given space to calm down and for people to use statements such as “Tell me your name” instead of saying “What is your name?”  My lists explain that questions are confusing and that they need time to process the words.

Rob is a big guy.  I don’t want anyone to think he is being aggressive when he is simply overwhelmed, scared and trying to calm down.  Casey’s screaming and jumping is scary to see and if someone tries to touch her, it will only get worse.  First responders need this information.  I’m sure their adrenaline levels are sky high when they respond to emergencies and they need to make split second decisions for their safety and that of my kids.  The more information available to them, the safer we will all be.

As for home safety, Casey and Rob both know they are to leave the house if they hear the smoke detectors.  They are never alone, but I have drilled this into their minds.  They are to leave and go sit in the garage (our garage is unattached) and wait for someone to come.  Will they do it?  I doubt it.  The smoke detectors have gone off and they have no response to them at all.  Again, I have made my plans for leaving the burning house.

In the middle of the night, I will get Rob first, as his room is right beside mine.  Once he is on his way to the garage, I’ll get Casey.  We can get out one of her windows without much of a drop, if needed.  Of course, as soon as I see the danger, I’ll be screaming both kids’ names and hoping they come to me and we can all leave together.  Maybe I overthink things, but I want a plan in place, just in case.

It’s just like learning CPR.  You pray you will never have to use it, but if you do, you want your movements to be instant and not have to stop and think about anything.  Plan ahead – think about all of the ways your children might react (like that’s even possible to do with our kids!) from hiding to running to having a meltdown.  You have to consider how you might move a person that is bigger than you and get them to safety.  Keep a treat they won’t refuse where you can get to it easily and bribe them if necessary (though I like to call this positive reinforcement instead of bribery!).

Contact your local emergency services and see if you can have your phone number highlighted with additional information.  This means that when 911 is dialed from your home, the fact that you have a person with special needs will automatically pop up on the operator’s screen.  Add as much information as possible, such as how your child may be react or how they communicate.  I did this a few years ago with our local 911 system.

A friend of mine at our local board of DD is working on a project for first responders and emergencies with people with special needs.  This could be a great suggestion for your local boards – or something you could work on.  First responders need training in helping our families and this doesn’t always happen, especially in rural areas.

My thoughts and prayers are with the families affected by Harvey, in the path of Irma and near the terrible wildfires out west.  These are terrible situations, but when you have a person with autism, it can be so much harder.  Please say a prayer for them, too.

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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 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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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.