Tag: autism

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Autism and Friendships

Autism and Friendships

Casey was stretched out in the recliner last night and was saying the names of her favorite Sesame Street characters.  Elmo and Cookie Monster topped the list, but she named them all as she giggled about what color each one was.  She really started laughing when I said that Big Bird was purple.  When you have a child with autism, you make jokes however you can!

What caught my attention was that she called Elmo her friend.  She has seen Elmo Live several times and firmly believes they are real people.  She talks to each of her stuffed toys and laughs as she “hears” their answer.  For some reason, I started thinking about friendships and felt sad.  Many times, people with autism tend to have few friends.

Casey has never seemed to care about having friends.  She’s always been “like me or don’t, I don’t care.”  She is who she is and always seems to be happy with herself.  Rob is different.  When he was younger, he wanted everyone to like him.  He wasn’t sure how to make that happen and never seemed to try to form friendships.  He was lucky, though.  There was a group of boys who made sure he was never alone and always had someone to play with.

Those boys stayed with him all the way through school.  He still talks about them.  Now, he has more of Casey’s attitude but he still hates to think anyone is upset with him.  He gets really anxious until he feels they are no longer upset.  I wonder if he misses those boys – or if he thinks they are still at the school, waiting for him.

Every parent wants their children to have friendships.  People that they can play with and do things together.  People with the same interests and that they can laugh with.  When you have a child with autism, it can be so difficult.  We hurt when they aren’t invited to birthday parties or when we can’t have a party for them because it’s not something they would enjoy.

Casey and Rob were lucky.  They had cousins close to their age and Mandy’s friends always included them.  It was only a few weeks ago that Rob named the group of them – Kelsey, Kenzie, Braeden, Ryan, Britanie, Troy and Evan.  He laughed and talked about the pickles that Ryan had gotten him for his birthday one year.  Sidewalk chalk was something Rob loved to do and this group would draw with him as long as he wanted them to.  Whatever Casey wanted to do, they joined in with her as long as she was interested in company.

These kids have grown up, of course, but their friendship meant so much to me, Casey and Rob.  The fact that both kids still talk about them shows how important they were to our family.  They came to birthday parties and played in the pool with them.  Were these “typical” friendships?  Yes – and no.  They reached out to Casey and Rob and were friends to them.  Did they all go do things together?  No, Casey and Rob weren’t able or interested in that.

All of this made me think.  How is friendship defined?  When we think of our friends, we think of people who like the same things we do – people that we want to spend time with – people we can talk to about anything.  If we think of friends like that, Casey and Rob don’t have any.  It makes me so sad to think about that.  They have Mandy and Cory, of course, but still….

But then Casey tells me Elmo is her friend.  And Rob says Bob is his friend.  Tory is someone else they both call “friend.”  A while ago, Rob said Grandpa Mack was his friend.  Tracie, Bud, Amy, Jessica, Adam, Rita, Doug, Scott, Andrew, Tyler, Brandon, Seth – they are all people Casey and Rob say are their friends.  The thing is, only Adam and Tyler are near their age.  Some are staff at the workshop they work at.  Others are a little older than them and they don’t see them away from work.  They haven’t even seen Bud and Amy in years – but still, they are their friends.

They don’t hang out with them.  They don’t have long phone conversations.  But Casey and Rob say they are friends.  They go on outings together.  They go out for breakfast or lunch.  Do they sit and visit for an hour?  No, but they are excited to see each other – isn’t that what real friends do for us?

So maybe it’s my definition of friendship that needs to be changed.  Maybe my vision of the friends I want my kids to have needs adjusted.  I want them to have people in their lives that they can count on.  Someone to have fun with.  Someone to go places with.  After all, how many young adults want to be with mom all the time?

I realized – they have that already.  Rob was excited to tell me he jumped in the pool with Andrew.  Casey giggles when she talks about Adam.  I may not hear a lot of the details, but it’s enough to know they are with friends.  Maybe not the kind of friends I have, but friends none the less.

It’s hard to think your child may be lonely.  For some people with autism, friendships are important and they hurt when they feel as if they don’t have any.  We need to do everything we can to help those people find someone to be their friend.  Their friendship may not be like what we picture a friendship to be, but if your child is happy, isn’t that enough?

If your child wants a friend, invite a child to do an activity with your child that he/she enjoys.  Keep the activity short and see how it goes.  You don’t want your child to become overwhelmed.  Invite the child to ask questions about why your child might do some of the things he/she does.  Talk to your child’s teacher and ask if you can speak to the class when your child isn’t there.  Explain to the kids what autism is and that it is hard for your child to make friends.  Most children want to help others and might be excited to make a new friend.

You may need to redefine your idea of what a friendship is, just like I did.  You may find that your child is perfectly happy to have someone play Legos in the same room without interacting.  Maybe they just want someone to splash around in the pool with.  Watch your child for clues on what they really want.

As for me, I’m going to be thankful for the people my kids consider friends.  I’m going to enjoy every smile and every giggle as they tell me about their adventures in one or two word phrases.  (sometimes, it takes weeks to hear the whole story, but it’s still great to hear!)  I’m going to pray that their friends know how important they are in Casey and Rob’s lives.  And I’m going to pray that they always have people they call friend in their life – even if it is a collection of stuffed toys!

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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 New Experiences

Autism and New Experiences

As many of you know, trying new things is not a favorite activity for people with autism.  Whether it’s a new food, new clothes or a new way to drive to school, new experiences are often stressful and can bring on sensory meltdowns – if you can even get your child to try!

When Rob was little, he wasn’t a picky eater.  There were things he didn’t like, but for the most part, he would try anything to eat.  Now, it’s hard to remember when that changed, but I know when he was in elementary school, he decided he would only wear striped t-shirts with no pockets.  It didn’t matter what  brand, but I soon bought all of them at Walmart because he decided to chew the front of every shirt.

Even though I had been living with autism for 10 years by then, it still never occurred to me that chewing on his shirts was a sensory thing.  He squeezed his jaw when he was anxious, so obviously he needed that deep pressure to calm himself.  It was natural for him to look for something to give him what he needed and chewing his shirts gave him that pressure.  It cost me a fortune to keep him in shirts and I finally gave up – he could go to school in chewed shirts.

Casey never chewed her clothes, nor did she care what she wore.  She would eat anything (even some combinations of food that would make the strongest stomach turn) and still does try anything.  However, she is afraid of water and heights.  The scary part is, even when she is scared, she will often still go in the water.  When she is scared, she squeals “Help” in a high pitched voice.

Rob finally pays attention to his fears.  He never had a fear of water.  He went into lakes or jumped off boats with no thought. (I caught him by the life jacket on more than one occasion)  We had a pool and he swam like a fish.  Unfortunately, a few years ago, he jumped into a pool with a friend who is several inches taller.  He couldn’t touch, got scared and water was no longer something he enjoyed.

He still loves watching water flow – he could sit for hours and watch a creek or waterfall.  You can see the anxiety drain out of him as he sits.  He enjoys hot tubs and, again, his anxiety levels drop.  Casey will slowly go into water where she can see the bottom, but no rivers or ponds for her.

Yesterday, we tried something new as a family and I’m so excited to say it was a huge success!  Mandy and Cory bought kayaks last year and Cory’s family has a campsite by the river that they have given us access to (It takes a village to raise a child – thank you so much to extended family!).  I thought Casey would probably go by the water and maybe sit on an inner tube, but I doubted Rob would.

Casey doesn’t care if her clothes get wet, but Rob does.  Your clothes are simply not supposed to get wet and he refuses to wear swimming trunks.  When he goes for aquatic therapy, he has a “special” t-shirt and shorts to wear so I decided that’s what he would wear yesterday.  He wasn’t happy about wearing shorts instead of pants, but he did it!  Score one for mom!

My dad had life jackets for both of them and, again, I doubted Rob would wear one.  I was wrong again.  He had no problem with putting it on and couldn’t wait to get to the kayak.  One of the kayaks is for 2 people and Mandy was going to take each of them.  Rob was careful not to get his shoes wet as he stepped onto the kayak and he wanted a paddle like hers.  He never figured out how to paddle correctly, but he tried.

Casey decided to wade in the river while she waited her turn.  Of course, as soon as she stepped in, she slipped and squealed “help” but she stood up and kept going.  I was so proud of her!  She slowly made her way to the middle of the river (where we were the water is only waist high at the deepest point – we didn’t let her go far and never without her life jacket on)

We brought another kayak and a tube down to the river.  We attached ropes to each and Rob climbed into the boat all by himself.  Casey hopped on the tube and for the next hour or so, Mandy and I held the ropes and let them float away and then pulled them back to us to float away again.  I wish we could have had cameras with us to capture the complete relaxation and small smiles on Rob’s face and the huge grins on Casey’s.  I am surprised that I’m even able to move my arms today but I couldn’t stop.  It was just too amazing to experience something new with them and to know they both enjoyed it!

Living with autism is hard on the whole family.  Too many times, there is something you want to try, but it just isn’t possible with the child with autism.  Then, if you do go, you feel terrible guilt because you didn’t include that child.  Many years ago, I finally realized that Casey and Rob don’t look at it as being left out.  They know how much I love them and would much prefer to stay with Grandma and Grandpa or Tracie instead of being taken somewhere that may cause stress.

Casey is able to go anywhere now.  She has made it through experiences that even a few years ago, she couldn’t have done.  She will go to movies, to shows (we’ve seen Elmo Live 3 times!) and anywhere to eat.  I don’t know why she can, but my guess is that she matured enough to try something and realized different things could be fun.  Now, she wants to go everywhere.

Rob is my homebody.  He is able to tolerate crowds for short periods of time, but is still picky about where he goes.  But – this is finally changing, slowly but surely.  His ability to get into the kayak yesterday without thinking twice is the perfect example of that.  At their day-hab, he is showing interest in activities that are outside those 4 safe walls and is even volunteering at a few places.

Again, I don’t know what changed.  He is still unpredictable about what he’ll try, but while he still hates new clothes, he is willing to wear them for short periods of time.  He will nibble at a new food.  He will go places, but I make sure it is for short periods of time until I know he’ll enjoy it.  Maybe he is maturing, too.

Never give up on trying things with your child.  Temple Grandin, a woman with autism, has said that we shouldn’t let our children stay in their worlds – that we need to help them join ours.  It’s not easy and it’s a slow process.  A turtle’s pace slow and sometimes, it’s one baby step forward and two big steps back.  I know you are discouraged and tired.

I know that taking your child out is scary and it’s exhausting. Bring all the supports you may need – snacks, fidgets, favorite books, iPads – and plan a short visit.  Only you can choose the best place to visit as you know your child better than anyone else.  Try to relax – your anxiety will feed theirs.  When your child starts to get anxious, pack up and go.  Make sure to tell your child how happy you are and how proud of them you feel.  You may not get a reaction, but they are listening – never doubt that.

Enjoy every baby step your child takes.  Cheer for them (and yourself – you deserve it, too!) and don’t worry about the next step.  Just like “typical” kids, your child will make his/her next step when they are ready and you can’t force it.

Never give up!  I completely understand that feeling and there were many time I felt like that, too.  When you do, just breathe.  Don’t think about the next month, the next day or even the next minute.   Just breathe, slowly and deeply.  You will get through it!

As for us, our next adventure will be taking a short kayak/tube trip down the river!   I’m not sure who is more excited – Casey, Rob, Mandy or me!

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Sensory Issues and Autism – Picky Eaters and the Same Clothes!

Autism and Sensory Issues

A few weeks ago, our county board of developmental disabilities held their prom.  Casey and Rob look forward to all of the dances that are held, but the prom is special – at least to Casey.

She loves the idea of dress shopping, getting her hair and make-up done and taking hundreds of pictures.  She insists on posing the same way every year (and not just for prom pictures – I have many, many years of Easter, birthday and Christmas pictures that look suspiciously alike!) and will always ask for more if I ask her if she thinks we have enough pictures.

Rob, on the other hand, enjoys going to the dances, but dislikes new clothes or posing for pictures, most of the time.  He’ll stand, but I have to be quick with the camera.  This year, there are several pictures of him dancing out of the way as the camera snapped.  I don’t try to dress him up, but I do make him put a “nice” shirt on, for a while.

Rob lives in muscle shirts and wind pants.  I have to buy super-soft t-shirts and cut the sleeves out of them.  I can’t even remember when the sleeveless part started, but I suppose I could look back at old pictures to see.  He used to wear t-shirts and jeans, but now, even the jeans are gone.

I’m sure it’s all sensory issues for him.  He does get warm easily – even in the winter, he is wearing the same shirts.  Even knowing it’s sensory, though, it’s hard to handle at times. We don’t buy him any shirts without planning to cut the sleeves.  He likes graphic t-shirts, especially ones with cars that Cory likes or other trademark items, like Coca-Cola.  I would love to see him in a pair of jeans (the last time he had jeans on was Mandy and Cory’s wedding – almost 6 years ago!) and nice shirt.

But, it’s not worth the stress to him.  Even if the shirt is super-soft, there is something that makes him uncomfortable.  With his anxiety, it’s just silly to add to that so I can see him in a shirt with sleeves.  His happiness is more important than a stupid shirt.

The sad thing is, there are people out there that judge him for what he wears.  Or they feel that I need to make him wear “normal” clothes (as I sit here at 4 in the afternoon wearing PJ pants while I write!).  I’m definitely not the mom who insists on deciding what my kids wear.  I  never was.  Don’t sweat the small stuff, you know.

And maybe that’s something as an autism parent you need to think about.  Does it really matter if your child is wearing the same blue shirt every day?  Buy several of them, wash them and let your child be happy.  Some would say I’m feeding into an obsession and that may be.  Only you can decide if your child’s need is an obsession or a sensory need.

If it is a sensory need, you need to be understanding.  Just because you would get tired of wearing the same thing, doesn’t mean your child will.  If you think it’s becoming an obsession, you will need to work on loosening the hold.  Honestly, obsessive compulsive disorder (OCD) is often part of autism.  Rob’s OCD flares when his anxiety is out of control, which feeds the obsessive drive, which feeds the anxiety and around and around we go on a not-fun autism merry-go-round.

I know many people are anti-medication, but for Rob, his anxiety meds are a life-saver.  He doesn’t know the name of the pills, but he does know he feels better with them.  When he feels calmer, we can work on other sensory issues.

He is a picky-eater.  Anything that is gooey, like Jell-O or pudding, will never touch his lips.  He loves mashed potatoes, but only without gravy.  I can proudly say that he is finally able to taste new things!  It took years and I never forced him to finish anything that he gagged on, but he still refused to try.  About 2 years ago, he started trying and I have no idea why.  Maybe his anxiety was calm enough or maybe he just matured. I’ll probably never know why.

Now, when we have a food he doesn’t usually eat, I put a small (and I mean, really teenie tiny!) piece on his plate.  While he is eating, I ask him to try a lick.  He is to the point that he doesn’t usually fight me, but tries the food.  I won’t say he likes most of what he tries, but he is trying and I’m so excited for him!  Small, baby steps are still progress, you know.

If you have a picky-eater, you will understand this, but few others do.  Have you ever had to make a special stop at a store because that is the only store that sells the certain brand of the food your child will eat?  Rob loves pretzels – but will only eat 3 brands.  And only the small midgets of 2 of those brands and the long rods of another!  We even discovered that Mandy can have the brand he loves at her house, but he won’t eat them there.  So I guess there are certain things that can only be eaten at certain places.  Another unwritten rule of autism for the Jones house!

Sensory issues are a difficult part of living with autism.  I was lucky because both of mine would leave their clothes on.  I know some kids are so sensitive that any clothes are painful for them. I feel for those parents.  I wish I knew a magic trick that would help, but unfortunately, I don’t.  Stay patient and try to laugh it off.  I used to work with a little girl who could rip her clothes off in a few seconds and a few weeks ago, I saw a picture of her dressed like a typical teenager with a huge smile on her face.  Your child may just need maturity to learn how to manage their sensory issues.

Just remember that the more stressed you get, the more upset your child will be.  Remember that they can often “read” others and you don’t want to be part of the problem.  I know there are times when nice clothes are expected, but would you rather have a nicely dressed, screaming child (who may yank everything off!) or a calm, happy child dressed in his/her favorite clothes?  I usually chose the happy child.  And if there was an event when he needed to be dressed up, I made it as short as possible.  For Mandy’s wedding, he only wore his nice shirt for pictures.  Same goes for prom.

Take a look at the picture with this post.  Rob is wearing a striped t-shirt – with sleeves!  He asked for his black t-shirt many times, but he left this one on.  He even danced a little at the prom wearing it!   He would have worn it all evening, a little stressed, yes, but he would have left it on, had he not looked in my bag and saw his trusty black t-shirt tucked in there.   What can I say?  I’m a mom – an autism mom – and moms are always prepared!  He was thrilled to have it on and we all had a great time dancing the night away.

I know you are tired of fixing the same foods (I’m sick of packing his lunch – only certain things can be in his lunchbox!) and washing the same clothes.  I am, too, and so is every other autism parent.  I’m tired of making sure that his “sets” of clothes are always washed together (he wants his black pants with his Coke shirt, etc.) and I’m tired of only seeing him in those 5 or 6 shirts.  But – I’ll never get tired of seeing him happy and relaxed and isn’t that what every parent really wants for their child?

 

 

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Grandma, Grandpa and Kids with Special Needs

Grandparents and Special Needs Children

As parents, we worry all of the time about our kids.  We worry about their health, their education, their friends.  When you have a child with special needs, those worries don’t necessarily increase, but they do change.  But what if it’s your grandchildren?  The worries are doubled because you are worrying about your children and your grandchildren.

In some families, grandparents know how to “fix” the child with autism.  As scary as it sounds, the old fashioned theory is that autism can be spanked out of a child.  If the parents would just use firmer discipline or give the child a good old fashioned spanking, the autism would be gone.  There are still a few of these people around – I’ve met them.

Often, people with this attitude are older and grew up a long time before there were special education classes.  In those days, children who were different were kept home or institutionalized.  Just because I can justify why they might think discipline will “fix” a child doesn’t mean I agree with it at all.

One of my grandmas passed away before Casey was born.  My other grandparents were in their late 80’s before she came.  While both of them loved and doted on her, Grandpa and Casey had a special relationship.  Even when she couldn’t talk to him, he sat and cuddled with her or made faces at her in a mirror to make her laugh.  When we got the diagnosis of autism, he said it didn’t matter.  To be honest, I wasn’t sure Grandpa knew what a diagnosis of autism meant (like I knew, either!) but he still saw the beautiful little girl he loved, not that something was “wrong” with her.  I remember talking to Grandma one day about autism and wondering what I was going to do.  She smiled at me and said, “Jennifer, you are going to love her.”

Simple words – and so much truth!  When the bad days happen and you feel like you can’t handle autism anymore, there are only two things you need to do – take slow, deep breaths and love your child.  One small step at a time, your day will get better.  Sometimes, the blackest days are just before blue skies.

I’ve often wondered how my parents handle having special needs grandkids.  Of their 5 grandchildren, two have autism and one has cerebral palsy.  So they worry about Casey, Rob and Lacey, (and Mandy and Anna!) but I know that they worry about my brother, Jeff, and me is just as strong.  I tell them not to worry, but it doesn’t matter.  That’s what parents do, after all.

I don’t want to think about the number of times that I’ve called them and was crying so hard that I couldn’t talk.  I know how desperately worried I was when Mandy called from Texas crying – I can’t imagine living with the constant worry my parents do.  When I needed to talk to mom or dad, I would try so hard to calm down before I called, but just the sound of their voice would make me cry again.  Sometimes, you just need to hear mom and dad’s voice, you know!

Whether I called because I was angry about services or insurance or schools or just because I was so tired I couldn’t think straight, mom and dad listened until no more words would come.  They couldn’t fix anything.  All they could do was love me and let me cry.  I hate seeing my kids cry – the pain of watching your children and grandchildren must be a hundred times worse.

My parents are also great at making me stop and consider just how bad things really are.  Many times, after talking to them, I am calm enough to realize that the “most terrible day ever” will be funny in a few days… or weeks… or maybe never, but the day will end.  Their faith is strong enough for all of us.

Of course, some of my “emergencies” made them laugh – after making sure we were all ok.  I remember one call I made – poor dad happened to answer the phone.  When the kids were little, I enjoyed entering baked goods in our county fair and had just made the most beautiful peach pie you can imagine.  I was so excited – I knew I had a real chance at a ribbon.  I sat the pie on the cooling rack and went to the bathroom – and Casey cut the pie!   I was so mad (she didn’t even like peach pie!) and then so upset because I couldn’t make another one.  So I did what I always do – call mom and dad.  I’m sure Dad thought someone had died because I was crying so hard.  When he heard that all I wanted was a can of peaches, I’m sure he wanted to reach through the phone and smack me for scaring them, but instead, he did what my parents always do – he brought me what I needed.

I know that my kids have come as far as they have because, even when I wanted to give up, my parents wouldn’t let me.  They gave me strength when I didn’t have any – and a kick in the butt, if I needed that.  I wish all kids had grandparents who did this, but I know it isn’t always possible.  If your kids have grandparents that can’t love them unconditionally, it’s up to you to protect your kids from their negativity.  It won’t be easy, but your parents don’t need your protection – your kids do.  Life is hard enough without feeling as though they aren’t good enough for their grandparents.

As parents, we may have had to change the dreams we had for our special needs kids, but we still dream for them. Maybe some grandparents need time to change their dreams, too.  My dreams are simpler now – even for Mandy.  I dream for them a life that makes them happy, a circle of support that love them as much as I do and a faith strong enough to withstand the crap that the world tosses at us at times.

 

 

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Autism and Siblings

Autism and Siblings

Autism and siblings can make for difficult family moments. When I wrote last week about turning into a “Mama Bear” I didn’t mention that, in our family, there is also a “Sister Bear.”  Sister Bear can be even more protective of Casey and Rob than me!  This fierce protectiveness helps relieve the Mom Guilt I’ve often felt because I always worried Mandy would somehow feel she wasn’t just as important and special as the other kids.

I had read so many stories of siblings of people with special needs who resented their family because the special needs child seemed to “get everything” and they felt left out.  I was determined Mandy would never feel that way, but I’m sure she did.  After all, even in “typical” families, siblings feel left out at times.

I’m not sure how old Mandy was when she realized that Casey and Rob were not like everyone else’s siblings – or if she even cared when she did.  She has always accepted and loved them as they are.  If anything, she expected them to be more what she wanted and could find ways to engage Casey in play, if only for a few minutes.  Rob was usually willing to do whatever Mandy wanted – and still is!

Our school district has 4 elementary schools and special needs students are in 2 of them.  This meant that Casey and Rob went to one school while Mandy went to another.  While I wasn’t crazy about the idea at first, I think it helped Mandy by letting her be herself and not just the sister with “odd” siblings.  She was a freshman in high school before she was in the same school as Casey.

To be honest, I didn’t think much about them being in different schools at the time, but now, I think it was a great thing for Mandy.  She needed a break from autism, even if she was too little to understand what that meant.  We all need that break, especially siblings.

Think of how difficult it is for you to hear something negative about your child with autism.  Can you imagine how hard it is for a sibling?   Especially if that sibling is young and hasn’t learned the hard truth that people aren’t always nice to others.  Mandy’s closest friends knew about Casey and Rob, but they accepted them and my kids joined in their play often.

There were difficult times for Mandy.  Items that were special to her were destroyed and couldn’t be replaced.  She was rightfully angry and I felt terrible that she was hurting because of autism.  I tried to help her understand that Casey and Rob didn’t mean to hurt her, but how could I help her when I felt the same frustrations at times?

I felt guilty when she wanted me to play with her horses or her Barbies and I had to sit at the top of the stairs so I could hear what Casey and Rob might be doing.  I felt like she only had half my attention when she deserved it all.  There is no stronger “Mom guilt” than feeling as if you can’t give your child your full attention.

When Mandy had special events, I made sure to make arrangements for Casey and Rob so I could be at them without being distracted.  It’s impossible for parents to be at every event for their child, but it is so important that you try – and that when you are there, that child has your full attention.  Remember – you have to celebrate every child’s achievements!  It’s easy to get so wrapped up in autism that a “typical” child’s accomplishments don’t seem that special.  Never let that happen!

Make time for special days with each of your typical children.  Every child needs one on one time with you.  You may need to be creative to find that time, but it can be done.  Once in a while, I sent Casey and Rob to school and took Mandy shopping and out for lunch.  Or I might let Mandy stay up late and we watched a movie after the kids went to sleep.  It didn’t matter what we did – only that it was just the two of us and she had my full attention.

I can’t imagine how hard it is for kids to have siblings with autism.  It seems they grow up much faster than their peers.  I can’t count the number of times Mandy took Rob to her room while I tried to calm Casey down.  Or the number of times Mandy gave me a hug as I cried because I was just so tired.  Or how I often I had to say to her we couldn’t do something because the other kids wouldn’t like it.  She seemed to take it all in stride, even as I was wondering if she would start acting out to get attention, too.

She defended (and continues to do so) Casey and Rob against anyone she felt was being unfair to them.  In high school, she overheard a boy call Casey a name and she went off on him.  She could barely tell me about it through her tears later.  I had a hard time comforting her when I wanted to find that kid and smack him, but she eventually calmed down.  She just couldn’t understand why anyone would be so mean because someone was different than them.  She still doesn’t.

Siblings of people with autism are often the most compassionate, strong, kind people you will ever meet.  They have lived a life most people cannot and will not ever understand.  They laugh at the silly fights other siblings have and they are typically very close.  They grow up knowing that it’s useless to get upset over little things and have a fierce independence.

You will make mistakes – we all do.  Forgive yourself and move on.  You will be too tired to play with your kids.  You will have to say no to some things.  You will have days that you feel like you are failing all of your kids.  But – those days are few and a new day always comes.  Do what you can, whether it’s spending a day with your child or cuddling on the couch.

I pray the same prayer other parents of children with autism pray – that Mandy has always known she is as awesome as Casey and Rob and that I love them all to the moon and back.

 

 

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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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Welcome to Autism, Apples and Kool Aid

Autism and Siblings

Welcome to the first post on Autism, Apples and Kool Aid. I’m the mom of three amazing kids – and a wonderful son-in-law! My oldest daughter, Casey, and my son, Rob, both have moderate autism. Our autism journey started almost 28 years ago and what a wild ride it’s been!

I’m not here to tell you that autism is easy – but it isn’t the terrible disaster that so many seem to think it is, either. My hope for this blog is to share my circus in the hope that families who are on this journey with us will share our laughs and our tears – but ultimately realize all of our kids are our most precious gifts.

The name for this blog came from one day that is stuck in my memory. A day which has proved that, sometimes, autism sucks, but sometimes, it’s our reaction that causes more problems.

Rob was 13 or so at the time and we had just finished remodeling our dining room. I was in another room when I heard thump, rumble, rumble, crash, splash and Rob’s giggles. What the heck? As I ran towards the sounds, I heard it again – thump, rumble, rumble, crash, splash and giggles. I found Rob in my beautiful dining room with an apple in his hand and red Kool Aid running down my walls.

It took a second to see the plastic cups of Kool Aid lined up on the table and for the dots to connect. “Don’t throw that….” I shouted as he launched the apple across the table. It connected squarely with the next cup in line. The cup flew in the air, the Kool Aid went everywhere and Rob doubled over giggling. I just stood there and looked.

When he picked up another apple, I sprang into action and grabbed the apple from him. He laughed, hugged my legs and took off for his room. I was left standing there watching red Kool Aid run down my walls, off my curtains, down my windows and drip from the ceiling fans. I was furious! What in the world possessed him to do something like this? He had gone bowling a few days before and I guess he decided to make his own at home.

It took me forever to get the room cleaned up. All the while, I’m mumbling not so nice words under my breath. Steam was probably coming out of my ears by the time I got done. I mumbled about autism… about red Kool Aid… about sticky floors… about not being able to handle this anymore. I’ll admit, my anger took over. Now, this is funny. At the time, I was ready to explode.

Finally, the room was clean. I was sweating like crazy and still mad about the mess…. and I flipped the ceiling fan on. You guessed it – in my anger, I had forgotten to clean those blades…. and little spots of Kool Aid flew all over the room again. My temper exploded and I began to clean again.

But – after the anger passed, I realized that day taught me a valuable lesson about living with autism. Often, our reactions to what happens make problems worse. Had I stayed calm, I would have thought to clean the blades (I hope!). I wouldn’t have been so hot to flip the fan on. Had I just cleaned the room and laughed with Rob, I would have only had to do it once.

I’m not always successful, but I try – really hard – to make sure my reactions to my children’s behaviors don’t cause more problems for all of us. Sometimes, my reaction is simply to walk away until we are all calm. Walking away isn’t always bad.

So, welcome to my circus. Come back to soon and let’s learn together how to live, laugh and love with autism!

Jen