Tag: autism mom

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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 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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Why am I an Autism Mom?

Why am I an Autism Mom

As you can imagine, I follow many pages on Facebook and Pinterest that deal with autism or being an autism mom.  So far, I haven’t found any others written by a parent with adult children with autism, but I’m sure I will.  Most days, these posts make me laugh – or cringe as I remember some of the things my kids did.  One I read today really got to me.

This mom was having a terrible day.  Her son attacks her when he is frustrated and her entire day had been trying to calm him down and avoid getting hurt.  You could tell by the post she was exhausted and was at the end of her rope.  What she was really ranting about, though, was what a “friend” said to her.

Honestly, I’m sure the friend meant well.  She said to the autism mom, “Well, God only gives special children to special people, so you are lucky.”  And autism mom was ticked off.  She didn’t want to hear stuff like that when she felt like her world was falling apart.  Been there, done that.

It was a Sunday morning.  Even though I was exhausted beyond belief, Casey wanted to go to church.  Rob did, too, but only so we could go to McDonalds afterwards.  At the time, the church had a ministry for people with special needs, so they had their own class to go to while I attended the service.

I took the kids to their classroom and waited for my parents.  As soon as I saw them, I started to cry – and spent the next hour in my friend’s office, crying to my parents.  You know the story – too tired, too stressed, tired of dealing with everything.  I just wanted some sleep.  Of course, had I let on to any of this before I had my meltdown, mom and dad would have taken the kids and I would have gotten sleep…. but… there’s that whole asking for help thing.

Finally, I got myself under control and we were leaving the church.  A woman came up to me, saw what a mess I was, gave me a hug and said, “God only gives special needs children to very special people.  You are chosen.”  Hmmm… yep…  and that woman about got a smack in the mouth.  Who the heck did she think she was?  I stood there, praying, “Please, God, don’t let me slap her.  Please let me get out of here.”  Luckily, Casey and Rob had left the building and I could leave quickly.

Now, I know she was just trying to help.  She didn’t know what to say and was only trying to make me feel better.  Now, I can appreciate the effort.  Then, I seriously wanted to smack her.  She had no clue what my life was like and she had no clue what God wanted to do.

Most of the time, hearing that special people quote doesn’t bother me.  I can smile and nod and go about  my business.  Sometimes, though, I really wonder why I was chosen to be the mom to these amazing kids.   I am told God knew what he was doing.  Sometimes, I ask God if He is sure He knows who I am.  And I laugh, because laughing is better than crying.  I know God knows what He is doing – it’s just our little joke.

Maybe God brought autism into my life because I was a shy kid who was incredibly stubborn and who had a bit of a temper.  Maybe He knew that fighting for my kids would bring me out of the shyness and let me find my voice.  Maybe He knew that my stubbornness and temper would come in handy.  When people said the kids wouldn’t do something, I made them keep trying.  Will they always accomplish every goal?  Of course not!  Who does?

But their stubborn mom won’t let them quit.  When I was told they would probably never be potty trained, I couldn’t imagine changing diapers forever and stubbornly kept at it.  I’m quite sure it wasn’t my stubbornness that got them to understand using the bathroom – it was their own ability, given a chance to mature.  As difficult as it was to potty train them, I wish this was something all kids learned.  So many people with autism are unable to do it.  Personally, I think this inability has more to do with sensory issues than not understanding.

I will never know why God chose to make me an autism mom.  I will never know if I’m doing the right things for Casey, Mandy or Rob.  I’ve done the best I could – and prayed a lot.  I’ve admitted when I was wrong, but I also stubbornly stood up to professionals whenever any of the three kids needed me to.  I refused to take no for an answer at times.  I didn’t back down.

I have been told that I’ve helped many families with decisions for their children.  I’m not sure about that.  I told them what I thought – and I told them how to fight, if they needed to know that.  The truth is, my autism mom friends have taught me just as much.  We learn from each other about fighting, about services, about grace, about school, about relationships.  Sometimes, all we need is someone who understands obsessive eating or sensory meltdowns to listen to our problems.  I know none of my friends will say the special children quote to me.  I know which friend will get mad along with me.  I know which will be a reasonable voice in my anger.  I know which will say she doesn’t know what to do but she’ll do it with me, whatever I decided.

I wish I knew why God blessed each of you to be an autism mom or dad or family member.  It can be a blessing, as much as a challenge.  I know about black days.  I know sometimes black days are black weeks or months.  I wish those days wouldn’t happen, but even people who aren’t dealing with autism have dark days. Don’t let yourself become completely focused on autism.  Focus on your child and remember, he/she is a child/person first.  Autism is just a part of them.

Be angry when you need to.  Cry.  Ask for help.  Talk to friends – talk to God.  He might not tell you why you are on this road, but He will walk with you.  And if you need a sympathetic ear, I’m always looking for new autism mom/dad friends.  Message me!

 

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A Proud Autism Mom

A Proud autism mom

Every parent loves to brag about their children.  You want everyone to know about the awards your child has won or how well they are doing in school.  You want to share the details of their latest accomplishment with anyone who will listen.  I’m a proud autism mom.

When you have a child with a disability, you are no less proud of your child.  Pride comes even easier when you know how hard your child has struggled with even the simplest things.  Unfortunately, not everyone understands why you are so excited because your child ate a new food.  They don’t get why it’s amazing that your little one slept through the night or actually wore a new shirt!

I get it – and so will thousands of other parents like me.  I laugh about some of the phone calls I made to my friends or parents because I was so excited that Rob wore a shirt that wasn’t striped (when he was in elementary school, every t-shirt had to be striped with no pockets.)  I remember texting Mandy when she lived in Texas just to tell her that Rob tasted a new food!

I remember being close to tears watching Casey sing in her first talent show.  She was so excited (I thought I was going to get sick from nerves!) and she did it!   Or how about the time they both told the waitress at the restaurant what they wanted – after reading the menu!  Only another special needs parent would understand my celebration – and celebrate I did!

Our milestones may not match what others do, but who cares?  They are milestones – and we made it!  All of the stress and tears were worth it  because our kids reached for the sky and touched the stars.  Who knows just how far anyone of them will go?  Think about how far your child has already come and dream away!  Never let anyone tell you not to dream.

Your dreams may be of a full night of sleep or of a child who is finally potty-trained.  You may dream of watching your favorite TV show without sound effects from the child beside you.  Maybe you dream about watching your child graduate from high school.  Go for it!

There were many days (and I’m sure that the kids’ teachers knew this) that I just wanted to give up on school.  I was tired of fighting for what they needed (and I mean for Mandy, too!) and just wanted to give up.  We made it, though – Casey and Rob both graduated with diplomas, not just certificates of completion.

Yesterday, I was lucky enough to be able to watch Casey and Rob compete in a track and field day for adults with special needs.  For the first time, Rob RAN his entire race!  I couldn’t hold back the squeals – I was so excited for him.  He was having fun and I loved seeing that.  My heart was bursting as I watched each of them win 4 ribbons of different colors.  Casey is more excited about the ribbons than Rob is, but I did catch him looking at his once with a smile on his face.

So, yes, I’m one proud mom.  What makes me proud may not be what other parents brag about, but I don’t care – and you shouldn’t, either!  Brag about every little accomplishment your child makes!  You both deserve it!  Enjoy every minute – take tons of pictures and relax!  You got this!