Tag: autism parenting

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Autism Parenting Magazine Articles

If you haven’t had a chance to check out Autism Parenting Magazine, you need to.  It is a great resource for parents, teachers and families who are living or working with someone on the autism spectrum.

I have been lucky enough to be published in their magazine twice and now I can share these articles with you.  I am not receiving any compensation for this – just excited to help as many families as I can!

My articles are Autism Times Two: Double the Fun, Twice the Love and 5 Tips to Finding New Love When you Have Children with Autism.  I hope you enjoy both!

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Autism and the Person Inside

Autism and the Person Inside

An autism memory popped up on my Facebook page yesterday of a day that I remember clearly.  When I got up that morning, I discovered that, during the night, Rob had gotten into the refrigerator and all of the cardboard boxes (waffles, pizza, etc) had disappeared.

The liquid soap that usually sat on the bathroom sink was gone – only the empty bottle remained and the lovely smell of coconut filled the room.   I could feel the irritation getting a better hold on me.  Why couldn’t he just sleep?  I was tired and I just needed a break.

When I went into the kitchen, I found the dish soap bottle had also been emptied and there were a few bubbles left in the bottom of the sink.  I was ready to explode and trying desperately not to get angry at Rob or to say anything that would hurt his feelings.  I knew it was all sensory issues and he couldn’t help it, but still, some days, I just didn’t care.

I went about starting my day, grumbling under my breath about autism and writing a list for the store.  I packed lunches and got Casey up (she always needs more time than Rob to get ready!).  When it was time, I went in Rob’s room and watched him sleep for a few minutes.  He looked so peaceful and I wondered again why he couldn’t just sleep through the night and stay out of stuff!

He rolled over with a smile on his face.  I said, “Hey buddy – you need to sleep during the night.”  He jumped out of bed and ran into the bathroom.  At first, I thought he was getting sick and I followed quickly.  But he was standing at the sink and grinning ear to ear as he pointed to it.  I said, “I know – the soap is gone.  I wish you wouldn’t do that.”  He kept smiling and said “clean.”  Me – “I know, Rob, I need to clean it.”  He pointed again and suddenly, I realized – he wasn’t telling me to clean – he was proud  because he had cleaned it for me!

All of the irritation was gone in an instant.  I remembered saying the night before that I needed to clean the two sinks.  So, Rob did it for me.  Maybe not in the way I would have, but he used what was available to him (cleaners are never in sight at our house) and helped his mommy.  All I could do was hug him tight and say, “Thank you, Rob.  You helped me so much!”

His grin was huge and he ran off to get ready for school.  When he went into the kitchen he looked in the sink and laughed again.  He danced off to school, happy that he could help, while I sat at the table and felt like the worse mom in the world.  My little guy was trying to help  me and instead, all I saw was the sensory issues and the autism.  I didn’t think about his need to help me.

I wondered why it seemed that I always jumped to the conclusion that autism was the reason Casey and Rob did anything.  I thought about some of their “quirks” and knew that some could very well be because they are my children and not because of the autism.  We all pass on traits to our children – hair and eye color, height, temperament – why not some “quirks” too?

I’m guilty of not trying some foods because they look funny.  Some smells make me sick and there are certain fabrics that I don’t like.  The main difference is, I don’t have a meltdown when confronted with sensory issues.  I can say, “No thanks” and move on.  Who knows what I would do if I couldn’t verbalize what was bothering me?

So I try not to blame everything on autism.  Rob was helping his very tired mom and I got irritated and blamed autism.  I was wrong.  Maybe some of the things we get so upset about aren’t autism at all.  Maybe it’s just the way they see the world – maybe partially because of the autism, but maybe because we all see the world differently.

We all need to try to remember that autism is just a part of who our kids are.  Sure, it may be a big part, but it’s still just a part, just like what they look like.  It’s hard, but please – look at the person first and the autism second.  Some days, this is nearly impossible, I know, but it’s so important.

Our kids may not be able to communicate very well, but they understand what is going on around them.  Rob knew I was stressed about getting things done, so he decided to help me.  I still feel bad that it never occurred to me that he may be helping.  I just assumed he was looking for sensory input and making more work for me.

There are days when you will just hate autism.  You will hate that your child has to deal with something that most people can’t even begin to understand.  You will be discouraged and you will cry.  But autism should never be what you see first when you look at your child.  See their bright, curious eyes.  See their smile.  See the love they have for you.

 

 

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Autism and the Mama Bear

An Autism Mom Defends her Children

I have always tried – really, really tried – to control my nasty temper.  I used to wonder why God gave me a bad temper – then I had kids with autism and that temper comes in handy at times to get my point across to people who just won’t listen.

One of my favorite movies is “Roadhouse” with Patrick Swayze.  In one scene, he is explaining to bouncers that they always need to be nice – until it’s time to not be nice.  And that’s what I do.  I’m as kind as anyone for as long as I can be.  And then Mama Bear comes out.

Anyone who has a child knows there are times when the child needs something that isn’t being provided to them.  Whether the school is refusing to listen or a doctor ignores your gut instinct, sometimes, you need to be demanding – and maybe loud.  It isn’t easy.

I hated being the parent that the school dreaded seeing.  But my kids were more important than anyone’s opinion.  I knew what they needed and I was determined that they would have every chance to be successful.  I learned the laws of our state and I made sure the district knew I knew them.  And that I wasn’t afraid to make phone calls if I needed to.

It wasn’t just their schools that made Mama Bear show up.  I remember one day when the kids were in their early teens.  We enjoyed going to our favorite craft store and looking around for ideas of things to make.  Casey’s obsession with socks was going strong at this point and she dropped in front of strangers all the time to jerk up their pant leg and check out their socks.  Even when it shocked people, most laughed.

As luck would have it, we got in line behind a jerk.  When Casey dropped and grabbed his leg, he freaked out.  I apologized and tried to explain about her autism.  He told me I needed to “Control that kid.  Freaks should be kept at home.”  And I saw red.  I calmly turned to Mandy, handed her the keys and told her to take Casey and Rob to the van.  As soon as they were out of hearing, I lost it on that jerk.  And I mean, full-on, out of control Mama Bear.

My exact words are lost in that red cloud of anger, but I do remember calling him a few names, telling him he was the one that needed to be locked up and then I told him exactly where he could go.  A large crowd had gathered by then, but I barely noticed them.  He just stood there – probably shocked – as I yelled.  A manager came over and the cashier explained what had happened.  When I stopped to take a  breath, she told the man he wasn’t welcome in their store and to please leave.

He mumbled something and left.  I calmly pushed my cart to the counter and paid for our items.  The cashier told me I was amazing and another mom said I did what needed done.  I said thank you and left.  I am not proud of losing my temper that day – but I doubt that man ever told another mom her child was a freak that needed to be kept at home. Or if he did, I hope he thought of me.

All of my kids have graduated, but the defending doesn’t end.  Casey and Rob can’t speak up for themselves, so I continue to do so.  Last week is a perfect example.  The details are not important, but what is important is that when I felt they were not being treated right, I went straight to the problem.  Unfortunately, the true problem isn’t one that can be resolved easily and even more unfortunately is the fact that the people who were only the messengers caught the brunt of my anger.

I did apologize to each of them and explain that I wasn’t angry with them, but the situation, despite many promises, was ongoing.  I hope they understood that I truly have nothing against them – the kids like them, so I know both are kind women.  But, Mama Bear was angry and someone was going to listen to me.

If you are like me, you will find yourself defending your kids for many years.  I doubt it will ever be your favorite thing to do, either, but if you don’t get your kids what they need, who will?  If you can’t speak up at meetings, write your thoughts down and read them.  It will help you concentrate and focus.

When I am really upset, I have a hard time truly hearing what is being said.  I have gotten into the habit of taking my best friend, Tracie, with me to meetings.  I can turn to her when I’m getting upset and she helps keep me calm.  Or she jumps in and offers the solutions we have talked about previously, but in my anger, I have forgotten.  You are allowed to take supports into any meeting.  Never forget that.

Whether it is a parent mentor who is trained to mediate meetings or it is your best friend, taking someone with you can help you during meetings.  Don’t be afraid to take notes.  Don’t be afraid to ask questions if you don’t understand.  Don’t be afraid to be a Mama or Papa Bear if you feel no one is listening to you.

I still hate being the parent that people dread seeing.  I want to treat others like I want them to treat me.  But what I really want is for people to treat my kids in the same way.  Respect and kindness go a long way.  Be nice until it’s time to not be nice.  Then let out your inner Mama and Papa Bear and get your kids what they need.

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Autism and Respite Care

Autism and Respite Care

I will be the first one to admit that asking for help is not easy for me.  I don’t like admitting that I am not a super-woman that can handle all that life tosses at me.  I don’t like admitting that I like a break from autism once in a while.  I feel like saying that means I need a break from my kids.

I know – it’s crazy.  We all need breaks from each other at times.  Typical parents need breaks just like special needs parents.  Spouses need breaks – siblings need them, too.  Being away from someone makes you appreciate them even more, right?  Absence makes the heart grow fonder and all that.

This weekend was one of my breaks.   Every few months, both kids spend the weekend at a camp about 20 miles from our house.  They also go for a week in the summer.  I’ll admit, the first time they went, I was terrified.  They had never been away except Grandma and Grandpa’s house and I was leaving them with complete strangers?  God was watching over my drive home that first night because I cried the entire way.  I just knew they would be upset and lonely all weekend and wonder why I left them.

As it turns out, I was wrong.  Very, very wrong.  They loved camp.  The counselors are all volunteers and are trained for the needs of each camper.  Casey and Rob made new friends and gained an independence that I could never teach them.  And I learned that, as important as we are to each other, we need to be apart, too.

The first time they spent a week away, I worried all week.  I enjoyed the time with Mandy and we did lots of fun things.  I have always tried to make sure she knew that she was just as special and important as her siblings and that week was wonderful for us.  Just watching TV and eating junk food was special because it was just us.  My biggest fear for Mandy has always been that she would somehow feel she wasn’t as important as Casey and Rob.  I won’t say I succeeded all the time, but I tried.

This weekend was a camp weekend.  I dropped them off at Echoing Hills  on Friday evening and picked them up early Sunday afternoon.  I thought about them the whole time they were gone, but I knew they were having fun.  They were going to the zoo with their friends and coloring eggs on Sunday.  The house was so quiet and I missed them.

But – I have finally realized it’s ok to miss them.  It’s ok to admit that I want to watch a movie without interruptions.  It’s ok to for me to want to go shopping with Mandy and not take Casey or Rob.  It’s ok for me to be me instead of “Mommy Jen” for a few nights.  It’s still hard for me to admit that – but sometimes, I get tired.  I love all of my kids more than anything, but I can’t be the best mom for them when I’m tired.

So, I enjoyed my lunch out.  I enjoyed shopping with Mandy and watching two (yes – two!) movies with Steve.  I crocheted this morning and watched TV in my PJ’s till noon.  I played on my tablet and I thought about them.  When it was time to pick them up, I was ready.

Like many parents of kids with communication problems, I’ve wondered if they love me.  I knew they did, but still, you know what I mean… that thought is always there.  After being away a few days, the kids are so happy to see me.  They are watching out the door for me to pull up and they run to me.  Casey’s eyes are twinkling as she hugs me tight.  Rob has a smile as he leans down and puts his forehead against mine.  The world is right again – Mommy Jen has come.

I ask about the zoo and Casey tells me she saw “da biggest tiger” and giggles.  Rob waits a few minutes, then says “turtle.”  I’m so glad he saw one – that’s what he really wanted to see.  We crank up the music and sing as loud as we can on the way home.

I doubt it will ever be easy for me to ask for help or admit I’m tired.   I know everyone needs it – no one can do everything alone.  When you are feeling alone, reach out, no matter how hard it is.  You are strong – asking for help won’t change that at all.  But the strong need to rest and if you wear yourself out, you won’t be the person your child needs.  Think about that.

Asking for help doesn’t mean you are weak.  It means you are smart enough and strong enough to know you aren’t perfect and you need help.  I know it can be hard, but ask for help and take the breaks you need from autism.  Taking breaks makes you stronger.  Take it from someone who has taken years to figure it out.

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Don’t Do what I Say!

Autism and Language

How is that for a conflicting title?  But, I mean it!   How many times have I wished my kids wouldn’t have done what I said?  Because, as with many people with autism, Casey and Rob take what they hear very literally.  There is no gray – if they hear it, it’s black and white.

The first time I realized this, Casey was about 5.  I was trying to fix a bottle for Rob and Mandy wanted help with her baby doll.  Casey wanted a drink – now!   She only said drink a few times, but she was pacing around my legs as I was trying to help everyone.  So I used the phrase my mom used on my brother and I – “Hold your pants on, Casey!”

And it worked!  She finally stood still so I could get Rob’s bottle and help Mandy.  When I turned to her, I was shocked to see her standing with her hands in her belt loops – holding her pants on.  Casey had no idea why her goofy mom told her to do that, but since that’s what I said, that’s what she did.  This was lesson that I’ve had a hard time learning as it seems I am constantly trying to remember to say exactly what I mean.

When Rob was 9, a new roof was being put on our house.  My only job was to watch him.  He loved tools and he loved climbing.  You guessed it – I turned my back for 2 seconds and he was gone.  I ran to the back of the house and he was gone.  I looked up to see him sitting on the edge of the roof, gigging.  Before I could think, I yelled, “Rob, get DOWN!”  Now, of course, I meant, use the ladder right beside him, but no, he got down.  He jumped from the roof, landed in the pile of old shingles and rusty nails, did a perfect somersault and took off.

I try, I really do, to say just what I mean, but it’s hard!  How many times a day do you say a phrase that everyone around you understands, but your child looks at you like you are crazy?  How about “It’s raining cats and dogs” or that someone is the “apple of your eye?”  It’s hard and our language is full of phrases like this.

Casey used to have a bad habit of dropping all of her clean clothes on a chair in her room.  I went in and told her to put her clothes away.  An hour or so later, the clothes were still on the chair, so again, I told her to put them away.  A while later, I went back in to see she hadn’t touched a thing.  So I said, “Casey, get those clothes off of that chair, right now!” How many of you know what happened?  Yes – you are right.  When I went to check on her, the clothes were off the chair and on the floor!   I don’t want to know how many times I have said this to her – and how many times the result is the same.  You would think I would learn.

So learn from my mistakes.  Always stop and think before you speak.  Make sure you say exactly what you mean.  Remember, they hear in black and white – no gray areas.  If you say it, they will believe you mean it.  Don’t generalize because that is something that is really hard for most people with autism to understand.  Say what you want/need in as few words as possible and be clear.

And when you do tell your child something and they do exactly what you say, laugh with them.  It’s not their fault that you are don’t say what you mean – or that you say it in an unclear way.  It’s just part of the autism that we all have to be more patient with.

What phrases have you used with your loved ones?

Have a Happy and Blessed Easter!

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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!

 

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A Birthday!

Autism Diagnosis

It’s hard for me to believe it, but in just a few days, my sweet Casey will be 29!  No, it doesn’t make me feel old at all, but it is a good time to think back to how far she has come.

When I took her for her first specialist visit, I was pretty sure we would be told she had autism, so it wasn’t much of a shock.  This was in the early 90’s and autism wasn’t very well known at the time.  My mom had read a book, shared it with me and we both knew autism was causing Casey’s problems.

The worse part of that first doctor visit was the book that the doctor recommended I read.  He said it was one of the best available (remember, this was a long time ago!) and I bought it immediately.  That was simply the scariest book I have ever read.

I read that she would probably never be potty-trained or be able to communicate in any meaningful way.  I learned that I may have more children on the spectrum and that those children would always require total care.

I wish I could find the author of that book now.  I would send him pictures of my kids as they run out to the shuttle for another day of work.  I would send him videos of Casey singing in talent shows and of Rob laughing with friends.  I would show him the amazing artwork they do and the way Rob builds with Legos.

I would show him how Casey can figure out what day of the week any date has fallen on.  People love to ask her what day they were born on – even many, many years ago.  I am sure it is a math equation – which makes me wonder how she can do that in her head, but struggles with simple math. (Actually, I know it’s  because she loves dates and hates math! )

Only those who knew Casey as a little girl realize just how far she has come.  Snow days are no longer reasons to scream the day away.  Sensory issues don’t cause as much pain, as we have learned how to help her – and she has matured enough to be able to ask for help.

So in a few days, we’ll celebrate the birth of this amazing young woman with Cookie Monster cupcakes, ice cream and presents and as I watch her blow out the candles, I’ll be thinking of the little girl who tried for years, but simply couldn’t get close enough to the candles to blow them out.  I’ll remember the tears we all shed on her 9th birthday when she was finally able to do it!

Keep us in mind on your tough days.  Your little ones will have terrible days, but with your love and support, you’ll be celebrating little joys, too!

Keep smiling and laughing!
Jen