Tag: autism

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How to Keep Friends Close when Autism is Your Life

How to Keep Friends Close when Autism is your Llife

This week seemed to be the week of missing friends – both in my life and in discussions I’ve had with other autism parents.  I have read stories on several autism Facebook pages I follow about missing friends and losing friends because autism is taking over their life.

I wish I could say this never happens.  But, it does.  Maybe a friend doesn’t know what to do around your child.  Maybe they get tired of listening to you talk about the issues that surround autism.  Maybe they just don’t know what to say or do when you are crying.  Maybe it was just time for that friendship to fade away.

I don’t think I’ve ever actually “lost” a friend because of autism.  I know I don’t see so many people that I think about often and I miss talking and laughing with.  I want to pick up the phone and call, but some nights, I’m just so tired.  It’s too much effort to try. And I feel terrible about that.

I am thankful for Facebook and texting. As impersonal as they may be, sometimes, that’s all the contact I’m able to do.  I found one of my best friends from my childhood on Facebook and am loving seeing Terri’s life in pictures.  A quick message from her is enough to brighten my day.

Other friends will send me texts, just to say hi or to check on us.  We may text a few times over the course of a day, but again, those texts bring a smile and often laughter.  I have amazing friends who know just what to say to make me laugh.  It may be weeks between times we talk, but I know how busy we all are.

But I feel guilty that I don’t see them more – or that I don’t pick up the phone to call.  Of course, some nights, calling anyone would treat them to an earful of whatever Rob’s phrase is for the evening.  Lately, it’s been “long black train” – only he draws it out into a long sentence and in a loud voice.  It wouldn’t be the relaxing phone conversation I want!

The funny thing is, even if I think I have no energy for a phone call, I feel so much better after talking to my friends.  Even if it’s just for a few minutes and all we talk about is stuff no one really cares about – just hearing a friendly voice is enough to brighten my day.

So here is my advice to you.  If you are having a bad day, call your best friend or send a text.  You don’t have to talk a long time or even about the stress of your day.  Let them vent to you and help you think about something besides autism or meltdowns or sensory issues.  Let them pull you out of the little box we all seem to live in.

Because autism can be a lonely life for parents.  We worry about our kids having friends, but what about us?  We need those friendships, too – probably even more than some of our kids.  We live our lives according to our kids schedules, no matter how hard we try to pull them into new experiences with us.

But – you know what?  We don’t have to have only friends who know autism.  Doesn’t everyone have friends that they only do certain things with?  Maybe you have a friend that you share a love of scary books with and you talk for hours about the latest Stephen King book or movie.  Maybe you have a friend who loves football as much as you and that’s your only connection.  Or co-workers that you can have a drink with.

My point is – don’t ignore the people who don’t know or understand autism.  Keep enjoying whatever it is that brought you together in the first place.  It’s ok to not think about autism every minute and that’s hard when you are only around people who live autism, too.

I have friends who have never met Casey and Rob and that’s ok.  They may not understand how different my life is at times but they are still loving, caring friends.  The only reason they don’t know my kids is the distances between where we live.  When I do get to make plans with them – finally – the last thing I want to do is take Casey and Rob, too.  I want a relaxing night of good food and lots of laughs.

You may think that people should know how busy you are and that they should make an effort to stay in your life.  But, maybe they are afraid they will catch you at a bad time if they call – or maybe, they are struggling with problems you don’t know anything about.  Don’t lose a friend over a misunderstanding.  Make a quick call and see what happens.  Send a card or write an email in the middle of the night while you watch your child bounce around the room.

You may not be able to go places with your friends easily.  Why not invite them to your house?  Plan a day of crafting or movies.  Have everyone bring a dessert and share.  While it may not be quiet in your house and a naked child may appear at any time, you will be with your friends.  They love you and – if you are comfortable inviting them to your home – they must know your kids.  Autism is nothing to be ashamed of – laugh it up!

We have to think outside the box when making plans for our kids, so why not do the same when trying to keep friends close?  No one ever said a weekly lunch date is a requirement for friendship or an hours long phone call.  Tracie has gone with me when I take the kids places – even just for a walk.  We chat while the kids run ahead.

Or we catch up in the car on the way to doctor appointments.  Invite a friend to go to the park with you.  One of my cousins and I use messenger to “chat” while we watch the same movie on TV.  Keeping the people you need close is hard, even without autism.  Busy schedules are difficult to co-ordinate.  And the guilt you may feel for not being there for your friends can eat away at you.

Let it go.  Just like I’ve told you before to let the dusting wait or the laundry waiting to be folded.  Sometimes, your kids need you  more than your friends do.  Your true friends will understand that.  Don’t let others lay more guilt on you.  Let it go.

For my friends, both near and far – ones I’ve known forever and ones I’ve never met – thank you.  Know I think of you and our fun times often and love you all!

 

 

 

 

 

 

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Autism, Sensory Issues and Fun

Autism, Sensory Issues and Fun

In our house, the last weekend of September/first weekend of October is a time to be thought of all year.  That’s the week that the fair comes to town with all of the spinning, dropping, swooping rides that Casey and Rob just adore.  Their autism sensory issues enjoy the most amazing times on those rides.

Rob loves anything that will swing him.  His absolute favorite is a giant boat that swings back and forth.  While most people want the end seats so they go higher, Rob doesn’t care.  If the end is open, he’ll sit there, but he’ll take any seat, as long as he gets to swing.  He was on this ride at least eight times this morning.

Another favorite is one that swings side to side.  He giggles as soon as he sees it and smiles through the whole ride, even when it goes high.  It always amazes me that he is scared of heights (won’t even think about riding the Ferris Wheel) but he’ll happily jump on rides that go just as high.

He refuses to go on anything too high.  Or anything that will go upside down.  He likes to go in circles.  Casey will ride anything, at least once.  She has to ride the Ferris Wheel, even though she is terrified of heights because she has rode it every year.  It’s routine and you can’t break routine!

We plan to get to the fair early on Sunday mornings, because there is never a crowd.  The kids can run from ride to ride without stopping.  By the time the crowds come, they are ready for French fries and to head home.  Rob doesn’t like crowds at all and after a few hours, both of them begin “shutting down” because they are over-whelmed.  What was a dream time turns into a difficult situation for them.

The swinging calms Rob down.  I’ve often told our neighbor I was going to buy a huge boat swing for our backyard.  She was completely agreeable, as long as she could ride it, too.  While I am joking about the giant boat, I desperately wish I could find something else that makes him so calm and happy.  He loves his swing, but it can’t swing him as far and as high as he wants.

Many families I’ve talked to don’t go to the fair.  The noises, the lights, the spinning, the people – it’s just too much for many people with autism sensory issues.  I understand that completely.  While the kids enjoyed the fair when they were younger, it wasn’t nearly as much as now.  Today, they can tell me what they want to ride.  They can tell me when they have had enough.  (usually by asking for fries – that’s always been the last thing we do and as you know, you can never break the routine!)

Casey and Rob rode constantly for a few hours.  I don’t think Rob was completely ready to stop, but when Casey asked for fries for the third time, we knew it was time to go.  I can always tell by the look in their eyes when they are becoming overwhelmed and shutting down.  The happy, sparkles that they start the day with are gone and dull eyes are looking out.  They both withdraw when they are overwhelmed.

When Casey was little, she didn’t give me any warning that she was overwhelmed until the meltdown happened.  She wasn’t able to say she had had enough.  Thankfully, she can now.  Hopefully, your little ones will grow into that skill, too.  Rob never had those meltdowns.  He would just withdraw into himself until he felt better.

I’ve always been willing to leave when the kids let me know it’s time.  It’s hard to do that, sometimes, when it costs so much to go to the fair, but at the same time, we have beautiful memories of a day spent together laughing and having fun.  It’s hard to put a price tag on that, especially since for so many years, Mandy and Cory were far away and not able to go.  Having them all with me today was so special and a day I’ll never forget.

There was one minute today that I felt a little melancholy.  When Casey and Rob are at the fair, someone is with them all the time, except when they are riding. (I watch them get on and then go to the exit and wait – it’s awesome to be able to do this!)  I saw some women sitting on a bench, enjoying each other’s company while their kids ran around the rides.  For just a second, I wondered what it would be like to come to the fair and be that relaxed.

It’s not that I was jealous.  More that I was curious about a life like that.  But, as Cory pointed out, I could do that, if I wanted to – just go to the fair without the kids sometime.  He was grinning and I had to laugh, but he’s right.  I may wonder about the lives of others, but in reality, they have problems, too.  Maybe not the same issues that we have as a family, but something.

I hope that each of you can find ways to enjoy family time together.  It’s never easy (But I doubt it’s all that easy for “typical” families, either!) but go for it!  Stay a few minutes.  Leave when you want.  It won’t work out all the time, but when it does, you will feel like I do, right now.  Happy, relaxed and so blessed to have the kids that God gave me.

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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 Celebrating Another Birthday

Autism and Birthdays

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Autism Mom Takes a Break – and That’s OK!

Autism Mom

Every year in August, I take a few days and get away from real life.  And every year, I think “why am I doing this?”  It’s such an effort to make plans for the kids and so much worry.  Sometimes, it seems it would be easier to just stay home.  But every autism mom (and dad!) needs to get away from autism for a while.

The crazy thing is – I’m so lucky!  I have plenty of help with the kids.  Their behaviors are minimal and no health concerns.  It should be simple.  It is simple.  And the autism mom guilt hits me.  As I’ve told you before- I absolutely hate to ask for help.  I mentioned that to Tracie and she told me to get over myself.  She’s right.  But still… the guilt lingers.

In all honesty, Casey is thrilled I’m going away.  She loves seeing the schedule for the weekend and she asks for a present (preferably sweet tarts) when I come home.  She uses a calendar and understands when I’ll be back.  In the meantime, she giggles that Tracie is coming!  She laughs about Grandpa and Grandma spending the night here.  She can’t wait to sleep at Mandy and Cory’s house.  And she knows that she can smile her sweet smile and try to get her way, since mean mom is gone.

Rob isn’t as excited.  It used to be really hard on him when I left.  He would say “Mom’s here” every few minutes the entire time.  He wouldn’t look at the schedule and didn’t care who was staying where.  I had disrupted his world and he needed to know when I would be back.  Thankfully, he only asked once or twice while I was gone this time, so things are improving.

When I got to Mandy’s to pick them up, Casey smiled her beautiful smile and came for a hug.  Rob jumped up and yelled “Get da van!”  (yeah, he’s STILL doing it.  Over and over and over.)  Once he was home, he came for a hug.  Few things feel as good as a bear hug from my big guy!  He doesn’t hug easily – and often, he backs up to whoever wants a hug and lets them hug him.  I love that he wants to hug me as much as I want a hug from him.

So I made my schedule.  I packed his lunch for Friday.  I put them on their shuttle Thursday morning and tried not to cry.  I made notes for everyone.  Why, I have no idea, since it is about the same thing every year.  I separated their pills.  I made sure they had plenty of clothes.  Yes – I get obsessive at times.  I just want everything to be fine while I am gone.

The second time I went away for a few days, I made a schedule for the kids.  Every thing they would be doing was on a separate slip of paper so they could pull it off the door as they finished it.  This seemed to really help Casey and she loved pulling the papers off.  I wrote everything down – come home and take your pills, Tracie will take you for supper, take a shower and your pills, etc.  Everything they would be doing was on a slip.  I made a schedule for Tracie, my parents and Mandy that was much simpler – just who would be where when.  They all got copies and I hung one on the pantry door.

The last few years, I haven’t made tiny slips of paper.  I just typed the schedule and printed it and Casey was ok with that.  Rob began to read the schedule.  He may not have been happy with my leaving, but he doesn’t get too stressed about it.  I am assuming every time I leave and disaster doesn’t strike that it will get easier to go.  I doubt it, though.

Part of the problem with this autism mom is that whole asking for help thing.  But another part is just a typical parent. I know Casey and Rob best (though Mandy is pretty darn close!) and I worry.  I want the kids to be able to be with others without problems and I know the only way that will happen is if they are with others.  But I worry.

But I got things ready.  I double-checked plans. I triple checked plans. I packed my clothes.  And I left.

My destination was about 6 hours from home.  Since I was driving, I had plenty of time to wonder what I forgot.  And remind myself that everyone here could handle anything that happened.  I wondered where they would pick to go for supper.  As I drove through the mountains, I thought about how much Casey and Rob loved the mountains and playing in the streams (or watching the water).

Every  parent that leaves thinks about these things, I’m sure.  It’s not an autism mom thing.  But, it is different when your child has special needs.  Especially if there is a medical concern or verbal difficulties.  You need to go, though.  You need to take a break.  I usually leave on Thursday and am back Sunday afternoon.   That’s long enough.

You may not be able to get away for that long, but you do need to get away.  If money is an issue, see if you can visit a friend or family member.  You have got to have time to recharge yourself to be the parent your little one deserves.  They may not understand why you leave, but that’s ok.  They will still love you when you get back.

I know how hard it is to go.  I know that you think no one can care for your child the way you do, but that’s ok.  Part of teaching our kids with autism is to teach them to try new things – to be around new people.  Your child needs that.  They need to know that even if you are gone, they are safe.  You can do this!  Make your schedules, check and double check your lists.  Leave notes everywhere.  And then – GO!

You need time to take a deep breath.  You have to be able to sit and listen to nothing.  I sat in a lounge chair and watched people one afternoon.  My biggest decision was whether to have a candy bar or a cookie.  It was wonderful!  I had a book with me, but never opened it.  I just sat.  And yes, I text home about the kids and was always told how much fun they were having.

Let go of the guilt.  I try, but it usually shows up.  But – I go and I have fun and I know that’s ok.  I am allowed to have a life beyond autism mom.  You are, too!  You deserve time away.  And your child needs it, too.

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Autism and a New School Year

Autism and a New School Year

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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Autism and Sheltered Workshops

Autism and Sheltered Workshops

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Autism and the Difficulties in Speaking

Autism Verbal Difficulties

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Circle of Autism Mom Friends

Autism Mom Friends

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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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!