Tag: autism famlies

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Autism, Mood Swings and a Helpless Mom

Autism and Mood Swings

I have shared before that when Casey was young, meltdowns were a big part of her life.  She started having them at school long before they occurred at home (probably because demands were placed on her at school and home was her “safe” place).  While we rarely see those hours-long meltdowns anymore, we do still have mood swings once in a while.

I know many people with autism experience mood swings and I wish I knew why.  Anger, tears and happiness all cycle and most of the time, you have no idea why and they can’t tell you.  This happened to Casey the other night.

We had supper and she was fine.  I was having a rough week, so when she flopped down on the couch, I was happy to just chill out, too.  She had her hand over her eyes, so I thought she might have headache.  As bath time approached, she keep peeking at me from under her hand (They always think I’ll forget bath time!) and giggling.  (I’m not nearly as crazy as they think I am – I do remember baths!)

So I told her to go start her bath water, she said “no” like she always does as she jumped up to get her PJs.  I heard her giggle as she ran to her room and back to the bathroom.  A few seconds later, the screams started.  I mean screams that, unless you have heard, you can’t imagine.  I don’t know why it doesn’t hurt her throat to scream like that.  She wasn’t having a meltdown – just a scream every few seconds.

I ran to the bathroom with no clue what was happening. Rob came out of his room, so I knew he had nothing to do with whatever set her off, but he wasn’t helping the situation as he yelled “Casey, no FITS!” and set her off again.  I told him to go in this room and rip paper and shut the door.

By then, she was crying – tears flowing down her cheeks.  I tried to hug her, but hugging is not something she wants unless she initiates it.  She leaned on me for a sec, pushed away and screamed in my face.  And screamed and screamed.  And then she was crying again and leaning on me for a hug.

I kept telling her she was ok and to tell me what was wrong.  I try never to ask the kids questions – they have a hard time processing them.  I say “Tell me what’s wrong” instead of “What’s wrong?”  I told her again as she cried to tell me, but again, she pushed me away and screamed “BATH!”

So I started her water and asked if she wanted Elmo bubble bath.  She said yes and started giggling.  I was desperate to get her mind off whatever was upsetting her so we talked about going to Grandma Rose’s and Grandpa Mack’s house the next evening and seeing Mandy this weekend.  Suddenly – another scream.  (do you have any idea how screams echo in a small, tiled bathroom?)

I sat back and let her scream.  When she calmed down again, I started talking about needing a Christmas list for her and how she could write that when she got out of the bath, if she wanted to.  Yes!  She did and she started giggling again and finally, she started talking a little about Elmo and Christmas.  I took a deep breath and prayed it was over.

She was drying off when the next screams started.  By now, Rob is working himself up to a anxiety attack – humming, pacing, telling her “no fits” (which, by the way, really ticks her off!)  I ran into the other room to get him a pile of magazines and pulled his door shut again.  And now she is standing in the kitchen sobbing her heart out.  I feel so bad – I just can’t figure out what is wrong and I’m almost in tears, too.

We get her pills and orange sherbet.  As she ate her snack, I got Rob’s shower going and waited for more screams.  He was worked up and I had a bad feeling there would be little sleep that night.  He was yelling, even as he took his shower.  I got his pills and snacks ready and sat on the kitchen floor.  My dog came to lean on me and I cried on her shoulder.  Feeling helpless is one of the most terrible feelings in the world.  I couldn’t help either of my kids that night and I knew that Casey wasn’t done, yet.

She was laying on the couch again.  When I went in, she held her hand out and I went to sit beside her.  She asked about her Christmas list and we wrote down several things she wanted.  She was giggling and smiling, but I knew the mood swings weren’t over, yet.  Soon, she threw back her head and screamed again.  She pushed me away and started crying again.

So I sat on the floor about three feet from her and kept begging her to tell me what was wrong or what she needed.  Finally, she jumped up and ran to her room.  I waited for the screams to start again and when I didn’t hear anything for a few minutes, went to check on her.  She was in bed with her blankets over her head and Elmo cuddled against her chest.

I went back downstairs and checked on Rob.  He was just finishing his pile of magazines and seemed happy.  So I went in my room and had a good cry.  Life is just not fair, sometimes.  I hate feeling helpless – especially when I can’t help my own child feel better.  Sometimes, I hate autism and the pain it causes them.  I hate not being able to fix the problem and help them feel happy.

I know you have felt the same way.  Parents of “typical” kids have the same issues, at times, but at least those kids can tell their parents what is wrong.  Casey and Rob have words, when they aren’t too stressed.  When anxiety and stress hit, their words disappear and there isn’t anything I can do but wait it out.

I still don’t know what happened that evening.  She woke up the next day like nothing had happened.  I thanked God we made it through another autism mood swing and prayed He would keep giving me the strength I need.  I guess that’s all any of us can do, isn’t it?

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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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Family Dinners and an Autism Mom Worries

Autism Worries

In a few hours, my family, plus my brother’s in-laws, will be gathering to celebrate the birthdays of my two beautiful nieces, Lacey and Anna.  I want to go.  I want to see everyone and I want to have fun.  But, as an autism mom, family dinners are something to be enjoyed – and worried about.

In my head, I know it’s silly to even worry about it.  I know that everyone who will be there loves and understands Casey and Rob.  I know everyone will help me watch them (the party is at a campground and close to a river).  I know that Casey is so excited about celebrating their birthdays she can’t stop giggling about it.  (Casey loves birthdays and firmly believes everyone’s birthday needs to have cake, presents and balloons – whether the birthday person wants them or not.)

Rob isn’t as excited about going.  He’ll go and he’ll be excited to see Uncle Jeff and Grandpa Mack.  But he probably won’t enjoy it like Casey will.  He will be in a strange place, with people he doesn’t know well.  If the campground is busy, there will be lots of strangers around.  He won’t want to eat anything and he won’t want to sit for long.

So, autism mom’s head is racing with crazy thoughts.  Should I take his iPad, even without WiFi?  Don’t forget his spinners and his fidget cube.  Don’t forget chairs.  Will he yell when he is stressed?  Will she try to eat before it’s time?  Will she grab at people’s shoes to see their socks?  Don’t forget their birthday cards.  Maybe I should have asked Tracie to go, just to have someone else.

What’s the weather going to do?  The crazy storms of the last few days have not been good to him.  (and the fact he is STILL asking for the van!)  Will Casey be careful on the playground with smaller children running around?  And on and on and on.   Anyone with a child with autism knows exactly how I’m feeling.  I want to go to the party.  Everyone loves the kids so if they do have issues, it won’t be any big deal.  I want to see everyone and I want to relax.

But… there’s always a “but” isn’t there?  Sometimes, it just seems like too much work to go new places.  I know they need to do it – I know they will probably be fine.  And I know I get so tired of worrying about it.  Sometimes, autism is not my friend.  Sometimes, I just want to toss chairs in the car, grab birthday cards and go.  Especially to a family function – what easier place is there to go than with people who love you?

No place, but sometimes, it’s still hard.  I’m lucky –  my family has always been supportive of the kids.  I’ve never had to deal with family members who say autism isn’t real or that if I spanked them enough, the autism would disappear.  I’ve heard stories from other families.  It’s insane, but true.

If Rob yells, others will help him calm down.  It won’t have to be me.  But I feel guilty and autism guilt sucks worse than plain mom guilt.  If Casey grabs at socks, she will be reminded she needs to ask first.  I may not remind her, but someone will.  They are both loved.

We could stay home tonight.  I could just put my comfy clothes on, pick up my book and kick back.  I could tell Casey the party was canceled.  If I write cancel on her calendar, she’ll be ok with it.  The sky is getting cloudy.  Rob is a little loud.  We’ll just stay home.

But – I miss my brother and want to celebrate with my nieces.  I don’t want autism to rule our lives.  So, we’ll go.  And Casey will grab socks and sneak food.  Rob will rock and squeal.  I’ll sit close and try to relax.  Jeff will tell me to chill out.

Decisions like this may sound silly to anyone who doesn’t have a child with autism, but they are all too real to our family.  Staying home isn’t fair to Casey, but Rob may not enjoy it.  Every day, little decisions that other families make without a thought are major decisions.  Whether to go.  What to eat.  Whether to attempt a trip to the store.  Believe me, I understand your thoughts.

So here is my advice.  Go.  Take whatever you think you may need and ignore people who say you are coddling to your child.  Do what you need.  Take food they like – if the hostess doesn’t like it, too bad.  Take their fidgets.  Take their headphones, security blankets and whatever else they need.  Don’t let what might happen keep you from experiencing life beyond your home.

Really – what’s the worse that can happen?  A meltdown?  Been there, done that – and you know what?  I’m still here.  The kids are still here.  They are happy.  We all survived.  I may have had a crying meltdown when we got home, but no one had to deal with that but me.  Meltdowns may never go away – mine or theirs!

So grab your supports.  Take a deep breath and go.  Experience the world and help your child do the same.  If it doesn’t go well, have a cry and move on.  I need to go pack a big bag of tricks – we’ve got a birthday party to go to!