Tag: autism parents

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Autism and the Every Day Never Simple Questions

Autism and the Every Day Never Simple Questions

Autism is part of our lives.  A huge part – even if we don’t always consciously think about it.  I’m facing a decision  now that should be fairly easy, but autism is causing me to rethink everything.

Several months ago, I lost my sweet lab to lymphoma.  She was just a baby when we got her and she grew up around the noise and unexpected jumps, squeals and screams that occur around here.  Even with that, when Casey had a meltdown, Eve would get anxious, barking and trying to get between Casey and I.  She never tried to bite Casey or even jump on her –  just barked like crazy.

(Picture the scene – Casey jumping up and down and screaming bloody murder while the dog is barking a high pitched bark and bouncing around with Rob rocking and yelling “no fits, Casey!”  It’s a wonder my neighbors haven’t moved away!)

Losing her was one of the hardest things I’ve had to deal with.  She was my best friend – the one who listened as I vented and let me cry on her shoulder.  When Mandy and Cory lived in Texas and it was just Casey, Rob and I in the house, Eve was my buddy.  I talked to her about everything and she kept me from being lonely.  When she died, I felt like I lost part of me.  I had no idea when I would ever feel like getting another dog.

In the last few weeks, I’ve been thinking about it.  I miss having a dog around the house, but I still think about her and wonder if I’m ready for another one.  She had so many quirks (I sometimes think she “caught” autism!  🙂  )  I wonder if I could let go of my expectations of the same quirks in another dog.  I wonder if I will love another one as much as I loved her.  And I wonder if another dog could be okay living in my circus.

I thought about getting an older dog – one that may not be as adoptable because of their age.  But – what if they can’t handle the noise?  the sudden movements?  The kids’ safety is the most important thing to me and a new dog is scary.  So maybe a puppy would be better.  One that could grow up with us like Eve did.

And today I realized that once again, autism is dictating our lives.  It should be a simple decision about whether to get a dog or not.  I get so tired of having to overthink every single decision I make.  Would Rob really wear that super soft shirt?  Will Casey be mad if I switch plans from one day to another?  Even what to have for meals!  (though that isn’t as  bad as it once was – I make what I make and Rob adapts to it or makes a sandwich)

It’s exhausting to have to think through every choice I make.  The kids want to go swimming.  Simple enough, right?  No, it isn’t.  Taking them to the pool without help is not going to happen.  Neither is taking them to the lake (though that would be easier, simply because they will stay together and with me).  I can’t take them to the river alone.

They want to go hiking.  Okay – great!  Outside and exercise… except, again, it isn’t that easy.  If we go  near a creek, Rob wants to sit and watch the water and relax while Casey wants to walk as far as she can.  He will walk, too, but watching water relieves his anxiety so much, it’s hard to drag him away from it.

This isn’t to say we don’t go lots of places without an extra adult, but going to strange places or where there are possible dangers is so much easier with an extra set of eyes on them.  They don’t run off like they used to, but who knows when it might happen again?   We do lots of things, but it’s always seems like it’s a big decision to go.  I’m tired of that.

I just want to decide to do something and do it without trying to think through every possible thing that can go wrong.  I want to take the kids to the pool if they want to go.  (I have taken them, but it’s hard and not something I really like to do.  We have a large aquatic center with a kids play area and sets of water slides – too much area for me to be able to watch them easily.)  Tracie will go with me – but there again, we can’t just go.  I need to see if she’s free and wants to go and plan from there.  I wonder if families who just decide to go swimming and leave know how lucky they are?

I try not to overthink choices too much but it’s hard when Casey and Rob are so different – even without the added stress of autism.  She wants to go – he wants to stay.  She will try anything – he has to think about it and often says no.   They are similar in ways, just like siblings usually are.  But, still, don’t you think it’s exhausting to always have to think about big (and little!) decisions so much?

Don’t you wish you could just say “Yes!  We’re going!” without thinking about the possible sensory issues or meltdowns or safety or food preferences?  I know I do!  At the same time, I wouldn’t change either of the kids.  Autism is as much a part of them as their hair color.  There are just times that I don’t want to have to think about how autism will affect a decision.

Most of the time, I don’t really think about it, I guess.  Our life is autism and I don’t think about a life without it.  I make decisions just like every other parent, based on what would be best for our family.  Autism is just so unpredictable that sometimes, decisions are hard to make.  I wish I could just decide to get another dog and go pick one out.

I asked Casey what she thought about a dog.  She wants a big one.  Rob wants Eve.  So do I.  So like everything else, we’ll see what happens.  I’m a firm believer in things happening when they are supposed to.  When it’s time, the right dog will find us.  Eve will make sure of it.

 

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A Diagnosis of Autism – Now What do you Do?

A Diagnosis of Autism - Now What?

Mandy was at a craft show today and met a lady whose grandson had recently  been diagnosed with autism.  Mandy talked to her for a while and shared a little of the conversation with me.  It brought back memories of similar discussions with other parents I’ve had over the years and shows again how lucky we were with our first few months.

Casey was very healthy and got her well-baby check-ups at our county health office, so our doctor never had a chance to tell us she was behind in many areas.  The nurse at the clinic didn’t seem concerned, but did say we should see about speech therapy for her.  I started driving her to a city 35 miles from home once a week for therapy.

Her therapist suggested she might benefit from preschool, so I enrolled her in the Y.  The first day I went to pick her up, I could hear her screaming from outside.  She was under a cupboard and out of control.  She was scared to death and overwhelmed by the noise and the differences in her routine.  She eventually settled down, but it was clearly not the right place for her.  The teachers were amazing and got on contact with our local school district.

Casey started her new preschool and loved it.  She adored her teachers and they understood a little more about autism.  During her summer break, she was officially diagnosed with autism.  We were pretty sure autism was the cause of her communication difficulties and the other signs that were beginning to show up in her life so hearing the doctor say the words wasn’t a big shock.

Since she was already enrolled in a specialized preschool, we merely continued with what we were doing – speech once a week and working with her on the same things her teachers were doing.  And I also began to watch Mandy and baby Robbie for signs of autism.  I couldn’t change it if they did have autism, but I wanted to know early.  When he was old enough, he started the same preschool that the girls had gone to.  He was already getting therapy before we got a diagnosis for him.

I had an amazing support system with teachers, therapists, family and friends.  No one really knew anything, but we all learned together and same days were not good.  There weren’t as many options for therapy in 1991 as there are now and when we did find something we wanted to try, it was rarely available in our small town – or insurance refused to pay for it.  And so the fight began…

I had to argue with the insurance company.  I had to call the doctor over and over to get prescriptions for therapies and then try to figure out how to pay for it.  Social Security wasn’t an option as it is based on family income until the child is 18.  So I did what I could and kept reading.

Most of the time, I felt incapable of getting the kids what they needed.  I was just a mom – not a professional with a bunch of letters after their name.  Surely, they knew what was best – right?  No!  And that was the hardest and first lesson you will have to learn.  YOU know your child best – their needs, their difficulties, what sets them off, what makes them happy.  Yes, you need to listen to the professionals, but never be too afraid or too shy to stand up and speak your mind.

I was too shy.  For months, the special education coordinator intimidated me.  He intimidated everyone – often, in meetings, he tapped pencils or shuffled papers and seemed to be not listening to a darn thing that was being said.  At the end of the meeting, he would hand me a paper and tell me to sign it.  And for a long time, I did.  I would leave meetings in tears – from anger and sadness.  Until one day, he shuffled his papers one too many times and Mama Bear showed up for the first time.

I slammed my hand on the table and told him that she might be a number to him but Casey was MY DAUGHTER and he was going to listen to every word being said or I would go over his head and find someone who gave a damn.  That was a turning point for us – and when he retired many years later, I called him a friend.   Always, always be nice as long as you can – but, stand up for yourself and your child, too.

Find a doctor you are comfortable with and who listens to you.  You are allowed to ask questions – if your doctor rushes you out or doesn’t acknowledge your child, you may want to find another doctor.  Hopefully, your doctor is like both of ours – they are willing to do whatever they can to help the kids.

One of the first phone calls I really recommend you make is to your county board of developmental disabilities.  They will have services that can help your family and be able to point your in the right direction for other help.   Most of the time, when your child becomes a client of your county board, you will be assigned a case manager (they are called service and support in our area) who will be the person you contact whenever you need help.  We have had amazing SSA’s over the years – I’ve cried to them and yelled and told them I was just too tired to deal with anymore.  They are my friends and I’m so grateful to each!

Social Security might be an option to help pay for services for your child, but remember, until your child is 18 it is based on family income.  It’s worth a call, though.

If your child is 3 or older, call your local school district.  Just a head’s up, though – all of this takes time and you may have to call more than once to get what your child needs.  Be persistent and know that, while your child is the most important to you, the district has 100’s of kids who are just as important.  Try to be patient – but persistent.  The squeaky wheel gets the grease, after all.

Some hospitals have therapy departments that may be able to service your child.  It might also be possible for lower rates if your insurance won’t pay.  It can’t hurt to ask.  Get used to asking for things because that’s a new part of your life.

Remember that this stuff doesn’t need to be done all at once.  Give yourself time to adjust to your new life.  Your child hasn’t changed, but having a diagnosis changes you.  Before, you were just a parent, now you are a parent of a special needs child.  Give yourself time to grieve, if you feel the need.  Some days, all you need to think about is just to take deep breaths.  Take care of yourself – that’s more important than ever.

Look for support, either in a group or online.  You will be surprised at how much better you will feel just by hearing what other parents have to say.  Lean on others and let them lean on you.  Most important – remember your child is still the sweet little person you love more than anything in the world.  Autism won’t define him/her any more than their hair color!

 

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Autism and a Mom’s Fear of No Fear

Autism and a Moms Fear of no Fear

A few weeks ago, I was reminded again that even though Rob has learned to fear a few things, he still doesn’t have a clue about how dangerous some situations can be.  Just another fun aspect of autism we deal with every day.

Rob was walking with a group from their workshop and never bothered to stop at a corner to look both ways before he stepped off the curb.  Luckily, the staff was quick and there were no cars coming.  But still, I have been trying to teach both of them to look both ways before crossing a street since they were tiny and it just won’t sink in.

Casey will flip her head like she’s looking, but she’s just doing what she thinks I want.  She isn’t really looking at all.  And she’s stepping into the street as she “looks.”  Rob won’t even hesitate to walk across a parking lot or a street.  He doesn’t even pretend to be looking.  I’ve got a grip on both of them or they are close enough to grab when we walk anywhere.

Part of the reason they aren’t scared is that even though I tell them a car might hit them, it’s never happened.  They have nothing to help them understand that they could get hurt and very badly.  I think the only way for either of them to understand the danger would be for one (God forbid!) to get hit by a car.  Even then, I’m doubtful the other one would be more careful.  It’s not something they have ever seen happen, so obviously, it’s never happened to anyone.

They both understand a stop sign.  They just don’t know why it’s there.  I’ve tried saying “Look, I’m stopping at a stop sign” when I’m driving, but they don’t even look up.  When we walk, I say “Look – a stop sign.  What do we do?”  One of them will say “stop” as they walk right past the sign.

I don’t want to even think about the times I walked through parking lots when Rob was a baby.  I would be carrying Rob, with a death grip on Casey and praying that Mandy would hold Casey’s other hand (Mandy is 18 months older than Rob – hardly more than a baby herself when I was trying to get us safely to the car).  I carried Rob longer than he needed, simply because he and Casey would both dart away and it was easier to carry him.  Thank God, we never had a major issue (just a minor one with Mandy when she was older!)

When Casey was 7 or 8, we were all outside playing.  Suddenly, I realized she wasn’t in the backyard anymore.  I thought I would throw up as I ran to the front of the house and the street.  No sign of her – I ran around the house again, calling her name and wondering who to call first to help me find her.  As I was making another circle, I heard her giggle and looked up to see her legs hanging off the porch roof.  She had climbed the wrought iron corner posts and was just sitting there.  I still don’t know how she managed to climb over the edge without falling.

I stood there looking up at her while she laughed and kicked and wondered if I could get her down without both of us falling.  I was heading in to call the fire department (my dad was a captain) and ask for help when I had an idea.  I asked Casey if she wanted a popsicle – and she flipped onto her belly, stuck her feet on the posts and came down.  I couldn’t breathe until her feet were safely on the porch.  “Red!” she said and went inside.

She also jumped off my dad’s boat more than once.  She walked out into water until she had to tip her head back to be able to breathe and keep going (one of us was always thisclose to her – and she always had a life jacket one!)  She grabbed at knives and jumped off the top of their swing set.  She was crazy on the trampoline.  She ran when she had the chance in stores or at school.

Rob was even more of a dare-devil than she was.  He jumped off the roof into a pile of shingles, did a somersault and took off running.  He jumped into pools with no thought of whether he could touch or not.  He climbed scaffolding (yep – I lost him on it once – thank God I heard him giggle as he watched us run around the house looking for him!)  He tried walking down our basement steps with a blanket on his head and fell – earned him a helicopter ride to the nearest children’s hospital when he wouldn’t wake up the next morning.

He jumped down the other steps and broke his collarbone.  He fell and cut his head open – stitches.  We no sooner had a hospital bill paid off than he did something else.

Neither of them understand the danger of strangers.  They have been told more times than I can count to never leave with someone they don’t know, but I worry that if the stranger offered them the right things, they might go.  They know to find a policeman or fireman if they need help and they both know their names and addresses, but would they really look for help?  I doubt it.  Having them disappear terrifies me.

Even though they have both learned to fear some things, I still worry when we go somewhere different.  I’m more relaxed, but still know that any second, one could dart away.  Rob has a healthy fear of deep water now (he jumped into a pool with a friend who is much taller than him and couldn’t touch – scared him beyond words)  Casey is afraid of heights (she insists on riding the Ferris wheel every year at the fair, but it scares her to death when she is at the top!)

I am so thankful they are both learning to be more careful.  I know that they will probably always be somewhat fearless compared to others, but at least they aren’t jumping off the roof anymore!  And I know how lucky I am that neither of them ever tried to get out of the house.  I know several families with more locks on their doors and windows than a vault and still need alarms.

What I really want is to watch them every second of the day, but I know that’s impossible and not healthy for any of us.  They are adults and need some space from me – and I need a break from them.  But still, I think about it – the world is such a scary place – especially when you don’t understand those dangers.

My plan for the future is simple – lots of hair coloring to hide the gray hairs that pop out every time they run across the street without looking or when Rob swings so high or when Casey wants to look at coloring books in a store by herself.  And lots of deep breaths to keep from panicking at their little “thrills.”

Be safe, everyone!

 

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Autism – Never Give Up, Even When you are Exhausted!

Autism - Never Give Up!

Today, I saw more proof that no one should ever give up hope when their child has autism.  While I would never say that every child with autism will progress in the same way, there are always improvements – sometimes, so tiny that you can barely see them, but they do happen.  And maybe they won’t happen in the time frame you want, but things can change quickly.

Casey wanted to go to the Memorial day parade in our town this morning.  I was going to cover it for our local paper, so it was no big deal to go.  Rob said “no fanks” when I asked if he wanted to go.  He went last year and watched it, but I can’t say he really enjoyed it.  Besides, it was hot today!  So he went to Grandma and Grandpa’s house and Casey came with me.

As soon as we sat our chairs down, she started giggling and rocking.  She was so excited!  It made me remember her as a little girl and how impossible parades were.  Mandy always wanted to go and Rob would sit beside her and watch, but Casey wouldn’t sit.  And if I tried to hold her on  my lap, she yelled and screamed.  I couldn’t trust her to sit by herself at all because she would dart away – into the street or to grab someone’s drink/food.  We didn’t go to many parades.

When the parade got to us today, I stood up to take pictures.  As the American flag made its way to us, I turned to tell her to stand up – and she already was!  With her hand over her heart!  I looked around to see who she might be mimicking, but there wasn’t anyone with their hand over their heart.  I couldn’t help it – I got choked up.  She remembered the many times I told her to stand for the flag!

We settled down to watch the rest of the parade and she laughed her way through it.  Even when candy was thrown from vehicles, she never made an effort to get up and get it.  When the parade was over, we walked to the Court Square for the ceremony.  Here was where I was concerned.  I knew she would probably sit for a little while, but how quietly, I didn’t know.  She might add her own sound effects to the ceremony.  Or everyone would hear her announce she had to go potty or she was hungry.

Instead, when the announcer asked people to stand for the invocation, she was on her feet, her hands clasped under her chin and her head bowed.  (I had no idea she even knew what invocation meant – we always say pray.)  When the prayer was over, she loudly said amen and grinned at me.  When the National Anthem started, she spun around to look at the flag (still standing) and started singing loudly.  She and I were among the few to be singing – and the others I heard all had disabilities, too.  (Why don’t people sing the anthem??)  When the Pledge of Allegiance was said, she stood and proudly recited it, too.

I was crying.  This amazing young woman was proudly honoring her country!  She remembered what to do and never had to be reminded.  Even later, when Taps was played, she stood and listened quietly.  She stood when she felt it was the right thing to do – she didn’t look around and see what others were doing.  All I could do was hug her and tell her how proud I was.  (She, of course, looked at me like I was crazy – she had no idea why her actions made me proud.)

This is the same little girl who used to fight about going into stores – the assault on her senses was too great.  She screamed when I left the room because she didn’t know if I had disappeared.  She beat her head on cement walls and put her head through two windows.  She ran from me – she ran from teachers.  She screamed when things changed her routine.  When in to the middle of a meltdown, she grabbed my hands to try and make me hit her head.  (sensory issues – she desperately need deep pressure – it took me years to figure that one out!)

I am not telling you any of that so you feel sorry for her.  I’m telling you so you can see that every child, no  matter what behaviors they have, can improve!  You have to keep your faith and hope, even when you spend your days crying from exhaustion and going on 2-3 hours of sleep a night.  Trust me – I know exactly how you feel!  Please, please – never give up on your child.  Dark days do go away (and yes, sometimes, they come back – but they always leave again!)

Casey’s changes didn’t occur in my time frame (otherwise, she would have been having days like today when she was 8!) but it did happen.  She grew up – I learned how to help her.  Keep working with your child – keep fighting for services – keep your faith!

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Autism Moms and the Need to Just Chill Out

Autism Moms and the Need to Chill Out

As soon as Mandy sees this post, I can imagine the look on her face – she told me to do just chill out several times today.  I know I need to do that, but you know how hard it is!

She called me this morning and asked if I wanted to bring Casey and Rob to a cookout at her in-laws camp site and then take a long kayak trip.  Oh man!  I haven’t been on the river yet this year and I wanted to go so badly, but the autism mom kicked in.  Who will be there?  Do they know about autism?  What if Rob gets loud?   That was the first time she told me to chill out.  “we got it covered, mom.”

Okay, she thinks no one will be bothered by the loudness, what about taking them on an hour long trip?   We hadn’t tried that, yet – only playing by the camp site.  “I got it figured out, mom,” she said.  Her plan was to tie their kayaks or tubes to ours.  And I wanted to go so much.  I still wasn’t sure about Rob, but I could just take him home if he got anxious.  So I asked them if they wanted to go and Rob was so excited he changed into his swimming clothes right then.  (We weren’t leaving for a few hours!)  I was amazed, as he hates to wear shorts.

As I was driving, I thought about how many times I wanted to do something and really wasn’t sure about the kids so I backed out.  It’s just easier to stay at times – you all know that.  And, really, there are things that I know one or the other won’t enjoy and I either take just one or we stay home.  I did that yesterday – we were all invited to a graduation party and I knew Casey wanted to go.  I thought about taking Rob, just for a few minutes, but he said “No, fanks!” as soon as I mentioned it.  He went to Grandma and Grandpa’s house and Casey went with me.

So we get to the camper and I’m getting nervous.  Rob started singing his anxious song, but he was doing it quietly and only once.  He wanted to see the water, so we sat on a bench where he could watch the river flow by and he got quiet.  He asked for the boat once or twice, but I told him we were going to eat first and he was okay with that.  Casey just watched everything and rocked a little.

When it was time to eat, I asked Casey to wait for Mandy to get her plate and again, I got the “chill out, mom” look from Mandy.  So Casey fixed her own plate (she’s perfectly fine doing that – I was just trying to keep her out of everyone’s way – course, no one was paying attention anyway – they were fixing their own plates!)  They both ate (I was impressed – you can never be sure Rob will eat – especially when he is excited about something).

As soon as we finished, Rob started getting wiggly.  He was ready to get in the boat.  Mandy and Cory got the kayaks ready while I wondered if Rob would actually step down into it.  The water was a little higher than when we were there before and he refuses to get his shoes wet.  Casey got into hers first – squealing “help” a few times – she thought we were going to send her down the river alone.  She calmed down as soon as she saw me get into my kayak and the rope holding us together.

I got us out of the way and turned to see if Rob would get in.  And was amazed when he stepped right in and settled down with his paddle.  Soon, he and Mandy were beside Casey and I and we were off.  We had decided to take them to the end of the campground and see how they were doing.  If either was anxious, it would be easy to get out there.  They both wanted to keep going.  Rob looked half-asleep – he was so relaxed.  He even splashed his hands in the water!

Now that we are home, Casey said long trips are fun, but about halfway through the trip, I had serious doubts about her.  She kept taking big breaths and sighing.  But she never got upset.  She didn’t relax as much as he did, but she seemed okay.

I looked around at the beautiful blue sky, the green trees along the river and the kids doing something together and wondered why I ever thought about not coming.  We would have missed spending a gorgeous day outside with family and friends.  It’s just that autism mom way of thinking.  And I know we all need to just chill out and go places.

Trust me, here – I am not saying you should take your child everywhere.  You know there are places that your children won’t enjoy – just like I knew Rob wouldn’t like the graduation party.  But we owe it to our kids to try new things!  We owe it to them to show them as much of the world as we can.  It may not be easy, but life rarely is – even without autism.

My advice is to try not to be scared at the thought of trying new things with your child.  It’s not that I’m afraid of trying new things – more that I overthink what might happen and worry about ruining other people’s good times.  Like today – if Rob had gotten anxious, we would have just come home.  It wouldn’t have been a big deal as Casey could have stayed with Mandy and Cory.  But I let autism into my head and it’s hard to get out sometimes.

Autism dictates so much of our lives.  It’s a simple fact that we will never be able to change.  What we can change is our reaction to it.  Even typical people have issues sometimes, so why do we worry so much about taking our children with autism into the world?  Take whatever you think might help and go.  Stay a minute, stay an hour – whatever you and your child can handle.  Only by experiencing the world can your child want to more a part of it.  If he/she has no idea kayaking exists, how would you know if they enjoy it?  You might have a star ball player or expert piano player – but only if you let them try.

Take a deep breath, chill out and go!  It won’t always work out, but at least you tried!

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Happy Mother’s Day to all Amazing, Awesome Autism Moms!

Happy Mother's Day to all Amazing, Awesome Autism Moms

Happy Mother’s Day, to all the awesome autism moms!   The one day of the year when you get to sit down, relax, have a cup of coffee (or a can of coke or glass of wine!), read a book, take a nap or watch an entire movie.  Wait – why are you laughing?   Honestly, I couldn’t even type that with a straight face.

To be honest, I had a completely different thought in mind for this blog earlier today and it just wouldn’t come out the way I wanted it to.  I decided to give up on it for a while and went to celebrate Mother’s Day and my brother’s birthday with family.  The cookout was going to be at a pond on the family farm.  I wasn’t worried about either of my kids going into the water (as much as Rob loves water, he won’t get his shoes wet – and so far, he isn’t willing to go barefoot at all!)  but I was worried about keeping him entertained and not getting into everything or singing his stress song at the top of his voice.

As soon as we pulled in, they both jumped out of the car and ran to the gathering.  Rob was amazed to see the dock over the water and immediately sat down to watch the water.  He was even more excited to see my niece and her cousin in a paddle boat and I knew he wanted to go for a ride.  He didn’t say anything about it, though, so I let him watch until after we had eaten.  The roughest part of the evening was his discovery of a pile of magazines he was bound and determined to get.

I told him no magazines.  He tried to “sneak” past me.  (He doesn’t seem to realize his sneaking skills are severely lacking – and he’s 5’10”!)   So I used my stern mommy voice and said no magazines, yes boat ride.  That finally got through to him, but he was still thinking about them.  We got him into the paddle boat and within a few seconds, I could see his anxiety levels dropping.  He paddled as hard as he could and then just stopped and we floated.  He put his fingers in the water and talked about fish and turtles.  I was shocked that he put his hands in!

It was as we were floating around that it occurred to me what I really wanted to say today.  What other people might see as little victories mean the world to me – and to every other mom (and anyone who loves someone with special needs!).  That’s what I want you all to celebrate today!  Yes, your life may  be harder than someone else’s – but it isn’t as hard as other people’s.  There are times I get so tired of doing baths/showers every night and I get grouchy about it.  But – then I think of the people who have to use lifts to get their loved one into a bath, if they can even do that.  I think of the parents who would love to be giving their child a bath every night, but can’t.  It’s all in perspective.

Give yourself permission to be whiny at times.  We all do it, but the guilt autism moms (and dads!) feel at being tired of things keeps us from talking about it.  Talk about it, anyway.  Brag to everyone about the smallest steps forward your loved one makes – if someone isn’t excited for you, ignore them and brag to someone else!  You have every right to brag, too!  You are a proud autism mommy – show the world!

When I share our story, I try to tell you how our lives really are.  Casey and Rob have had so many issues they had to deal with as children – and as adults.  I don’t sugar coat anything.  For a while, life was hell.  Some days, Casey screamed the day away.  I couldn’t figure out how to help her – and how to be a good mommy for Mandy and Rob, too.  I hated that I wasn’t a good enough mom to know what to do for her.  I hated that I had to depend on a doctor that was two hours away to help me with ideas and medications.  But – look at her, now!

I write to give each of you hope.  Our kids change quickly – and we may never know why.  I’m still trying to figure out the changes in Rob, though I’ve mostly decided to just love every minute of it!  We went to Prom last Friday and he is smiling in nearly every picture – even wearing a shirt with sleeves!  He danced the Twist with us and tried the Cotton-Eyed Joe.  The moment that brought tears to my eyes was when he slow danced with me, then Mandy.  He put his hands on my shoulders and swayed back and forth.  It’s the first time he’s ever shown any interest.

Instead of wildly dancing (by that I mean she runs back and forth like a deer – flying low and leaping), Casey stayed right with Mandy and I and she danced like we were.  She tried to follow the line dances (she doesn’t know right from left, no does she care!) and mimicked what we did.  Another proud autism mom moment.  And that’s what my Mother’s Day is about.  Quick, fleeting moments that may not mean anything to other people, but that mean to world to me.

Rob let his fingers touch the water.  Casey sat politely and waited her turn to fix her plate at supper.  Rob rubbed the dog’s head.  Casey played in the gravel and watched the little boys with a smile on her face.  He paddled a boat and looked for turtles.  She got in the boat, even when she was scared of the water.  They both said good bye and thank you as we left.  Little moments.

I hope each of you enjoyed little moments in your day.  I was lucky enough to have all of my kids with me at lunch – to see my parents, my brother and his family, and my extended family.  I hope that each of you has a big support system that you can rely on.   I know that isn’t always possible, but remember that even if your “family” isn’t around or can’t understand, others will be willing to help you.  Family isn’t defined by blood – it’s those people who walk into your life and never leave.

So -Happy Mother’s Day to all the autism moms out there.  And to the dads who are doing both roles – and the grandparents.  Today is a day to celebrate little victories and all of your hard work in those small, huge steps.  I hope you get plenty of hugs – no matter how you get hugs!  They might be tight bear hugs, or forehead to forehead, or light squeezes, or just a lean.  However your child shares love – enjoy every precious moment!

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What is the Best Way to Teach Communication for People with Autism?

Best Way to Communicate for People with Autism

I’ve been asked so many times “How did you get Casey and Rob to talk?  What’s the best way to teach communication skills?”  And I have an answer – I have no idea.  I don’t know.  We got lucky.  The stars were aligned.  I don’t mean to be flippant about my answer, but I just don’t know.  I wish I did.  I would be rich!

But seriously, every single communication device has good points and bad.  And, every person with autism is different.  What worked with Casey, Rob had no interest in.  I’m still trying to figure it out.

Casey could sing entire songs as a toddler, but she had no interest in using her words to ask for what she wanted.  Even into preschool, after a year of speech therapy, she had few words that she used consistently.  Her teachers used PECS (picture exchange communication system) with her and she began to understand that she could ask for what she wanted.

They printed the PECS cards of everything that could think of that she might want and put velcro on the back of each card.  Using a long strip of cardboard with opposite velcro, they constructed sentences for her to repeat.  She could point to each picture as she said the words, such as “May I have cookie, please?”  I also started using American Sign Language with her.  I found out that she could say the word easier if she could sign it, too.

When she was 5, we had Auditory Integration Therapy done with her.  We knew her ears weren’t hearing normally and had heard good results with this therapy.  My mom and I (and Casey, 2 year old Mandy and baby Robbie!) spent two weeks in a hotel about three hours from home.  To add to the “fun” we all had pink eye.  My dad and their dad joined us over the weekend.  My best  memory of that trip is that 4 days after Casey started the therapy, she said “doughnut” at breakfast!  I hadn’t asked her what she wanted – she volunteered she wanted a doughnut.  And I cried.  We all cried.  (she did get a doughnut!)

The therapy was done in June and we continued to hear a new words throughout the summer.  She still didn’t use whole sentences, except the ones we had scripted for her.  And if she was having a meltdown, communication was non-existent.  She simply couldn’t get the words out when she was upset.  Meltdowns were common when she started school.  She had them at school often, but at first, we didn’t see them at home (probably because she didn’t have demands on her here)

Now, Casey is more likely to have a “conversation” with you – about what she wants to talk about, of course.  She won’t sit and visit with people, as she sees no reason to do that.  If she wants something, she is able to tell me what she wants.  She can share memories and answer most questions.  I try to always remember to say “Tell me what you want” instead of “what do you want?”  (I highly suggest you try that with your child – statements are much easier to process than questions).

Rob had more words than Casey as a toddler, but he was also less likely to use them.  Mandy spoke for him all of the time.  When he wanted something, he pointed to it and Mandy told me.  I asked her so many times to let Rob talk, but she was so earnest in wanting to help him, she couldn’t understand why she shouldn’t.  When she started preschool (she went to the preschool our school district offered – typical and special needs children.  It was where Casey had gone and she loved the teachers), I was amazed at how many words Rob could say.

He didn’t see any reason to talk beyond what he needed, but he had a huge vocabulary compared to Casey at that age.  (She understood everything – she just didn’t acknowledge the words)  He loved being read to and pointing out objects in books.  He was still so far behind other children his age, but at least I knew the words were there.  With Casey, I was never sure.

I used ASL with him more than I did with Casey.  It’s funny, because once in a while, she still signs please and thank you as she says them.  Rob liked to rip up the PECS cards, so ASL was the better choice for him.  I still use it with him, especially when he is getting anxious.  We use later, stop, listen, now, wait and look a lot.   He understands a long list of signs and used to use them often.  Now, he tends to just say what he needs, but once in a while, he does sign as he says his words.  If your child has any sensory issues with their ears, trying ASL may be a good choice for you.

I also suggest that when you talk to your child, make sure you give them time to process what you said and form an answer.  Rob was in elementary school when we discovered that if he was asked a question and given 30 seconds to answer, he usually would.  I was thrilled with this and still give him plenty of time when I ask him something.  (By the way – 30 seconds is an eternity when you are trying NOT to say anything and waiting for a response!  Keep waiting, anyway!)

Some people are completely against using ASL because they think it means they are giving up on their child speaking.  This can’t be farther from the truth!  You are simply giving your child another way to communicate as they learn to use their words.  And, the reality is, some people with autism will never have verbal skills, but they use other ways to communicate and the results are amazing.  Be happy with whatever way your child chooses to communicate!

Casey and Rob both have iPads with a communication app on them.  They love Proloquo2Go.   They both understand how to use the app (it’s easy – you can even add actual photos of items your child might want) but they tend to say what they want after playing with the app.  They both like to use the app to make sentences that are funny to them.  Rob especially likes to type sentences such as “The dog is purple” and just laugh and laugh.

There are so many techniques for helping your child communicate.  You know your child best and what might interest them.  They may like the picture exchange actions or a communication device might catch their attention.  You will have to try many techniques and constantly work with your child to improve their communications skills.  Notice – I didn’t say “verbal skills.”  I said communication – in whatever form that takes!

Think of the people with autism who never speak, but can type their thoughts.  Or the ones who sing.  Or who can sign.  Never give up, but adjust your dreams.  You may never “hear” your child say “I love you” but you may see in it signs, in words or, most definitely, in their eyes.

I wish I had the perfect answer for each of you.  I wish I could promise you that your child will be communicating with you soon.  What I can tell you is that you will learn how to communicate with your child.  It may not be long talks around the supper table, but you will each learn the best way to communicate.  It may be an odd assortment of techniques that work for your family.  It won’t matter how you communicate – it just matters that you do and that you accept however your child chooses.

 

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Who Says People with Autism Can’t Feel Empathy?

Who Says People with Autism Cant Feel Empathy?

Raise your hand if you have been told that your child with autism can’t feel empathy or recognize emotions in other people.  Of course, some won’t be able to easily – but that’s true of “typical” people, too.  Some people just can’t understand how others feel.

Rob and Casey can both read emotions in other people.  Casey hasn’t always been able to as easily as she can now, but Rob has always read people.  He gets very anxious if he knows someone is upset – he seems to pull their emotions into himself.  When someone is angry, he hums, paces and rocks until they are calm.

When we go anywhere, Rob keeps an eye on Casey.  He grabs her hand and they stick close together.  Or they hold onto me – she holds my left elbow, he holds my right hand.  It’s hard to walk down aisles in stores sometimes, but I always know who is missing by which hand I can move freely.  When I pick the kids up from work, if he gets to me first, he asks for Casey.  If she gets there first, she is ready to go.  While she is always aware of where he is, he voices his concerns more.

Seeing people cry makes Casey nervous and she giggles.  She will lean towards the person and get right in their face.  I haven’t been able to tell whether she is trying to see if they are really upset or if she is trying to help, but you can tell by the sound of her giggle that she is nervous and doesn’t know what to do.  Crying babies are especially hard for her.  I’ve told her since babies can’t talk, they cry when they need something, but she seems to think that she doesn’t talk much, but she doesn’t cry to get what she wants.

If Casey doesn’t feel well, Rob likes to check on her.  When she’s asleep, he pulls the blanket off her head and peeks on her to see if she’s okay.   She might peek in his room if he is sick, but she wisely stays away so she won’t get sick, too.  She asks me about him – if he is throwing up, if his belly hurts, if he is hungry.  So I know she worries, too.

On the rare occasions that Casey as a meltdown, Rob checks on me.  He seems to think I need protecting while I am talking to her and he is sympathetic to my stress.  However, never doubt that he is a typical brother, too – when she starts to get calm, he likes to get close to her, point his finger and say “Casey, no fits!” which, of course, makes her furious.  He laughs when she gets mad at him.  Proof again that people with autism feel the same emotions that everyone else does – just in different ways, sometimes.

While Rob is more empathetic to Casey, last week, I saw proof that she watches over him, too.  They took a trip to a fire station and for some reason, Rob become anxious.  He began to sing his stressed song – loudly – and pacing.  Their staff tried taking him outside to walk around, but he couldn’t calm down.  And then Casey stepped in.  As the picture shows, she went to him and let him hold her so he would feel better.  I was ready to cry when I got the picture.  I know she loves her little brother, but to actually see her acting like a loving, big sister is a moment I will never forget.

She shrugged it off when she got home.  She told me she saw a fire truck and she got a hat.  I told her how proud I was that she helped Rob – she asked for supper.  A typical conversation in our house – but I know that she heard and understood me.  She just cares more about supper than whether I’m proud of her.  Whether she acknowledges my praise or not, I keep telling her how proud I am.  I know she hears me and understands – she just has other things that are more important to her.  🙂

Your child may not pay much attention to how other people feel right now, but don’t assume they don’t know those feelings.  Maybe they are like Casey and their own personal needs are just more important than what others think or feel.  You also have to remember that Casey wasn’t always this empathetic.  She has grown and matured so much over the last few years.

Never, ever think that how your child is doing right now is the way your life will always be.  One thing I’ve learned about autism over the last 30 years is that changes always happen – sometimes so fast it makes your head spin and other times, it takes months and months of hard work for all of you before you see any changes.  And sometimes, people who don’t see your child often are the ones who notice the smallest changes.  Celebrate every success, no matter how small it may seem.  Those little steps add up to a long trail of successes that you will want to look back on with pride!

 

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Why do We Judge Other Autism Parents?

Why do we Judge Other Autism Parents?

I follow several Facebook pages of parents with kids with autism.  Some are just starting their journey and some have an adult child, like me.  The other day, I read a post by one of the mom’s that really got to me.

She was venting because another autism mom attacked her for being happy that the spring break was over and her son was back in school.  She was amazed that anyone, especially someone who has a child with autism, could be upset with her because she was happy to be back in their routine.

The other mom said the break was “only” two weeks – what kind of parent can’t handle being around their child for only two weeks?  She went so far as to say the mom should be ashamed of herself for wanting to be away from her child.

I posted a reaction – anger.  My response was simple – every parent, regardless of whether their child has special needs or not, is ready to get back in the routine after a long break.  Any parent who says they  never need a break from their kids is lying – to themselves or you.  We all need a break – from the kids, from our spouse, from our jobs.  Autism just makes it that much harder.

And, even more important, that mom had no idea what the other home was like.  She might be lucky enough to have an “easy” (is there such a thing??) child with autism, but none of us know what others’ lives are like.  As much as I share with my autism mom friends, they don’t know what it’s like in my house, day after day.  They can imagine, just like everyone else.   And, while I may have a good idea of what their lives are like, I really don’t.

I can picture what it’s like having a child who is blind with autism.  I can try to imagine what it’s like to live with a child who may become violent.  I can try to imagine conversations with a high-functioning teenager.  They can try to picture my life with two moderately affected young adults.  It just doesn’t work.

So why do parents judge each other?  We are all in this together.  What good does it do anyone to toss negative comments around?  We all have to deal with enough negativity with the rest of the world.  We need to let go of the whole judging thing.

I’ll admit – I’ve thought before that someone is handling a situation in a way I wouldn’t.  I can say I would “never” do something – but I’m not in that home.  There is no way I could possibly know what those parents go through every day.  Have I thought people were crazy to do things they do?  Sure – as I’m sure people have thought the same about me.  I’m ok with that – some days, I’m sure I’m crazy.

You wouldn’t tell a typical parent how to raise their child.  Why would you try to tell a special needs parent what they are doing wrong?  Why would you attack someone for voicing their feelings?  Sure, you can say you would feel differently, but don’t make anyone feel bad because they don’t do things your way.

It’s impossible for anyone to know the journey we’ve walked.  Even the people who were right there with  me, but didn’t live in the house, can’t always know it all.  I’ve always been open to hearing the ideas that other people have, but I don’t think I should be made to feel bad if I don’t follow all of their advice.  I know Casey and Rob better than anyone (except Mandy!) and I’ll always do what I think is right for them.  It may not be what other parents would do, but so what?  Other parents are not my responsibility.  It really is that simple.

I feel so bad for parents who are truly doing the best they can that are getting ridiculed or judged by other parents.  News flash – none of us are perfect – we are all stumbling through this journey as best we can, just like every other parent in the world.  Instead of offering judgment, why not offer an ear?  a hug?

My rant is over.  I just hate to hear about parents getting attacked for sharing their feelings.  If we can’t share online, somewhat anonymously, then how can we share with our friends? I want my friends to know that even if I don’t feel the same as they do, I’ll always be here to listen.  I won’t have the answers they need, but I can offer a hug or a shoulder to lean on.

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Autism and the Unpredictable Speed of Change

Autism and the Unpredictable Speed of Change

When you live in a house with autism, you become adapt at keeping things the same – the same foods, the same schedule, the same clothes.  That’s why Rob’s changes in the last few weeks have pleasantly shocked me – and made me wonder “WHY?”

Rob doesn’t like new foods, new clothes or new places.  New people make him nervous until he gets a reading on them (Both Casey and Rob sense the true person inside – if they don’t like/trust someone, I watch that person closely!)  But, last week, he put a new shirt – all by himself.  Now, yes, it was the same brand that he loves, but that has never mattered before.  Even a new shirt that was exactly like an old one was something to avoid.

He used a hammer to hang up signs in his room instead of telling me to do it.  He made pancakes.

He ate canned fruit a few weeks ago.  Not because I asked him to try, but because he saw it in the refrigerator and asked for it.  (apparently, it has to be canned pineapple, not the little snack packs, because he refused to eat those – but, hey!  He tried!)   He also tried a blackberry (and it flew across the room when he spit it out!)  I can put different things in his lunchbox.

He has been coming home and not running for his iPad immediately.  He has been playing with his Legos, lincoln logs, trains, and magnetic blocks again.  He does still get excited about ripping up magazines and cardboard, but isn’t actively searching for it.  He lays on his bed and just chills out.

The staff at their workshop said he has been joining in activities more at the shop.  I heard stories about his laughter and how silly he can be.  A few weeks ago, a strap on his sensory swing broke and he fell (not far – thank God he was just sitting in it and not swinging widely!).  I was so worried about him not having his swing.  When it was installed, it was to help him with the out of control anxiety he was dealing with every day.  I also worried that even if it was fixed, he would never use it again – he tends to remember when painful things happen and can’t understand that just because it happened once, it may not happen again.

So I filled out the paperwork and the part was ordered.

And now, he acts like he doesn’t need or want it.   HUH??

Last week, he went to play Bingo at a nursing home.  (WHAT?)  A staff member asked anyone who wanted to go to get their coat and he did.  While we have played Bingo at home, he loses interest quickly.  He even played while there!  A new activity in a new place?  The autism mom in me was suspicious.  What’s going on?

The moon isn’t full.  The weather is as crazy as it’s been for weeks.  His meds haven’t changed.  The people around him are the same.  Our schedule is the same.  I wracked my brain trying to figure out why he was so willing to do new things.

After Bingo, he went to aquatic therapy, which he loves.  On his way home, he stopped a staff member to show her his swimming bag.  It has Mighty Morphin Power Rangers (the first ones) on it and he named them all for her.  He started a conversation!  Rob talked first!  Can I be any happier??

The next day, he went to a care center to do crafts with residents.  He talked more about the power rangers.  He sat and did as he was supposed to.   And as happy as I am, I want to know why?  What changed and what can I do to keep him excited to try new things?

He went to play basketball. He went to a gym and walked.  He came home and got sick later that night and even that was different.  He’s always been too scared and upset to be alone when he is sick.  This night, he took care of everything on his own.  I didn’t even know he was sick.  I did stay up with him, as he never went to sleep that night (or until early evening the next day, even though he was feeling much better).

His schedule changed Friday evening and he didn’t care.  He played with his blocks and went to bed.  The weather changed quickly last night and he hasn’t seemed to notice.

I am over the moon happy for all the positive changes.  I am so proud of him for trying things that truly stress him beyond anything I can imagine.  But, I still want to know why?  Has he just matured?  Was he spending too much time in the swing at the workshop?  But how can you tell, cause it wasn’t that long ago that he couldn’t get through his day without that soothing him.

Something like this happened to Casey several years ago.  She wasn’t always the social butterfly she is now.  She much preferred staying away from stores and restaurants and to only go to familiar places.  After she graduated and moved to the workshop every day, she began to open up to the idea of trying new places.  Now, it’s a struggle to make her understand that money doesn’t grow on trees (or in my purse – she thinks it just magically appears there) and she has to pick and choose what she does.  For the most part, she is doing awesome with that.

Maybe that’s all that’s happened with Rob.  He matured enough to handle stress and the idea of new places and people.  I hope that’s all it is.  I worry that someone was bothering him and that person is no longer near him.  I worry that he hasn’t felt well and I didn’t know it.  Don’t you love autism mom guilt?  I just need to let it go and enjoy the changes in him!

I’m excited about all the changes and I’m loving every minute of it!  I hope it continues and that he might learn to enjoy new things – or at least to try them with proper supports.  Both of them are going to a planetarium tomorrow – neither even know what it is (Casey thinks she is going to a star!) but he’s willing to try.  I can’t wait to hear how it goes!

I hope reading about the changes in Rob helps you remember that our kids are constantly changing and growing and maturing.  Your child may not like new things now, but maybe that will change.  They are learning more every day – even if we don’t see immediate results in the hard work we do with them.  Keep the faith – and keep trying, even when you don’t think it’s doing any good.  It is – I promise you!