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Posted on May 17, 2023May 17, 2023


AUTISM FAMILIES DON’T NEED PITY

Autism Families Don’t Need Pity

I suppose that is a pretty blunt title, but it’s true.

I was at an event with Casey and Rob last week and a lady I barely knew came up
to me and wanted to give me a hug and tell me how badly she felt for me.
Honestly, I was confused – I had no idea what had happened that made her feel
that way. So I asked why she felt sorry for me and she told me because I had
Casey and Rob.

Shock. I was in total shock. Why would a near stranger ever think that was an
appropriate thing to say? And if she had even a clue about our family, she would
never have said that to me. So I said something like – why would you even feel
that way? And her answer was again that poor me – I had to live with two people
with autism. Lucky for her, she moved on to someone else before I could get over
my shock and really tell her how I felt.

The really sad thing is – maybe 10 minutes later, another person walked up to me
and said nearly the same thing. I looked over at Casey and Rob, saw they were
having fun and asked why she felt pity for us? Because our lives must be so
hard…. I’ll admit it. I got angry.

I told her everyone had hard days and our lives were no harder than anyone
else’s. Sure, I’d rather not relive some moments in our past, but I’m fairly
certain every parent in the world feels that way. There are many times I’ve
believed my life was easier than most. When my three were teenagers, I never had
to worry about where they were or if they were drinking or driving crazy. I
didn’t have to pay outrageous car insurance bills.

I didn’t have to try to run three people in three different directions every
single day. I didn’t fight about clothes, make-up or curfew.

Instead, we ate supper together every night. We watched movies and played on the
trampoline and in the pool. We enjoy hiking together. We go shopping and out to
eat. We do crafts. We danced silly dances in the living room and sat on the
porch swing.

Casey and Rob are happy. They get to do things they love to do and be with
people they love. They look forward to simple things in life and don’t worry
about stuff that truly doesn’t matter. And people feel sorry for us??

I’m not saying that we didn’t have exhausting, miserable days. I’m saying that
everyone does and days with autism are no worse than any other family. In some
ways, our lives are easier.

It’s all in perspective. Sure, there were days I didn’t like autism much. But a
good night of sleep usually took care of that. (Sleep is seriously the best cure
for so much!!)

So, I’m asking anyone reading this to think before you speak. You may feel that
your comment about feeling sorry for us is comforting, but it’s not. Yes, there
are families that eat that pity up, but most of us don’t feel that way. We feel
like you are only seeing the autism and not the amazing people our kids are.
Instead of offering pity, offer help. Learn about our families and offer to stay
with our kids so we can take a nap or run an errand. Learn how strong and close
most of our families are and how we pull together to help each other.

We don’t need your pity. We need your acceptance and your help.


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Posted on April 18, 2023April 18, 2023


AUTISM AND THE TOUGH QUESTIONS

Autism and the Tough Questions

Several months ago, I had to meet with a lady from our county board of DD about
Casey and Rob’s waivers. She had pages of questions and I answered each the best
I could, but …. I’ll admit, some of the questions hurt. I am constantly amazed
by how far Casey and Rob have come since they were children and having to answer
questions about their abilities wasn’t easy.

I know they need constant care. I know they need help with many things. I know
they have no sense of danger. I know it isn’t safe for them to use appliances
without total support. I know they can’t handle money. I see this stuff every
day.

But – those questions were tough.

I know the questions were necessary to get Casey and Rob the support they need.
I know that it was important. And I know I cried when it was over. It was a huge
reminder of how much support they do need.

To me, they are just Casey and Rob. I know he needs help turning on the water or
he’ll burn himself in the shower. I know she can’t wash her hair (we recently
discovered that if Casey can’t see her hands, she can’t control them very well,
such as to wash and rinse her hair.) I know when he’s anxious – I know when
she’s getting overwhelmed. It’s just life to me.

When it came time to redo their ISP’s, it was even tougher. The ISP is supposed
to be detailed enough that a complete stranger can read it and be able to care
for Casey and Rob. I understand the idea and it’s probably a good one, but
really? It would take a hundred pages of notes for me to tell anyone they
schedules, their needs, their triggers, their anxieties, their likes/dislikes,
their routines. But, I did the best I could and laughed to myself. There is
simply no way anyone with autism can be contained to a form.

And when I do figure out their routines, they change. Just ask any parent who
stocks up on their child’s favorite must-have food, only to have that child
decide they no longer want it. Rob has done that to me many, many times.
Luckily, he usually comes back to wanting that food.

It’s hard for any parent to see the delays their child has. It’s hard to sit and
listen to everything they can’t do. It makes you question every decision you
made – would they be better off today if I had done this or that?

But sometimes, the tough questions make me proud. Yes, Casey and Rob need
constant supervision and support in all areas of their lives, but you know what?

They are happy. She is experiencing things and going places that even five years
ago, I wouldn’t have believed. She will be singing in a talent show later this
week (I cannot even imagine standing on a stage and singing to a crowd – that’s
terrifying to me!) She went to a college football scrimmage over the weekend. He
is venturing out of his comfort zone (With people he trusts) For the most part,
their anxiety is under control. And we know how to alleviate their sensory
needs.

So my advice to you is to let those tough questions remind you just how far your
child has come. Yes, it hurts to hear the delays, but think back to other
meetings and remember that the delays that were important then are the ones your
child has overcome. Every small step forward is a reason to celebrate and be
proud!

No one can tell you what skills your child will learn. No one can predict the
future. Please don’t let the tough questions bring you down. Keep dreaming and
reaching for the stars with your child!


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Posted on February 12, 2023February 12, 2023


AUTISM AND THE CIRCLE OF FRIENDS WE NEED

Autism and the Circle of Friends we Need

I’m not worried about taking Casey and Rob many places anymore. I’ve gotten that
tough skin and can usually ignore anyone I need to. (Yes – I have days that the
comments bother me, but not as often as they used to.) But – it’s still so much
fun to have an outing with a group of people who completely “get it.” They know
autism like I do and nothing any one in our families does bothers anyone else.

It’s an amazing feeling.

Yesterday, we went bowling with our autism support group families. There were
about 30 of us and it was so much fun. The bowling alley was so accommodating
for our needs and gave us extra space so no one would have to wait long for
their turn and even asked if they needed to do anything about the lighting.

But the best part was watching Casey and Rob and everyone else have fun. When a
child laid on the floor, no one cared. When Rob yelled to hear the funny echo,
no one cared. When one wanted to tell everyone else how to bowl, no one cared.
And they all cheered for each other. I’m sure the whole place could hear us
cheering for each bowler.

I did have to remind Casey and Rob when it was their turn, but really, I could
just stand and visit with the other families or take pictures. Or just soak in
the fact that I didn’t have to care if anyone made loud noises or was humming or
rocking. I could just relax and laugh the time away.

I have shared many times that I think you should take your child wherever you
want to and learn to ignore the comments of people around you. Your child has
the same right to be anywhere that everyone else does. But – it’s also so
important for you to have a group of friends who completely understand (Well, as
much as anyone can, since everyone with autism is so different!) what your life
is like.

It’s important for you and your family to have those times when you can just be
a family and not the “special” family. It might be hard to find other families
like yours, but it’s so worth it. We are extremely lucky that our small town
embraces our families for the most part and places are willing to host events
for us, like our sensory friendly movies and pool parties.

Try to connect with other families in your child’s class. Join a support group
(Or start one if you can’t find one). Talk to movie theaters and see if they
would be willing to do a special movie and let people know it’s happening. It’s
easy to do – especially with social media.

I know it’s hard to join a group, but I also know that no matter how many close
friends you have, friends with special needs children are important and will
completely enrich your life. They will have ideas and advice for you that no one
else can give and are perfect to bounce ideas off of.

Yesterday was so much fun. I hope everyone that was there knows how special they
are to me and how thankful I am that they came and had fun with us. I can’t wait
for the next event!


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Posted on January 22, 2023January 22, 2023


AUTISM AND LEARNING ABOUT MONEY

Autism and Learning about Money

Teaching Casey and Rob the value of money has always been a struggle. They can
both name all of the coins and can look at bills and say read the number on
them, but understanding the value has always been hard for them. It’s hard for
many people, not just those with autism. I remember Mandy telling me when she
was 4 or 5 to “just use a credit card, Mommy” when I told her I didn’t have the
extra money to go to McDonald’s like she wanted.

Every time we go to a store, I remind them how much money they have to spend.
And, usually, it’s not an issue, but Rob struggles more with wanting more
expensive items. He likes the big train sets and big boxes of Legos and can’t
understand why he can’t have them every time he wants one. Casey tends to look
for smaller items – socks, coloring books, etc.

Yesterday was a good example of a learning experience for Rob. They each had $50
to spend on our shopping trip. We went to Hobby Lobby and they both got
everything they wanted – pipe cleaners, construction paper, coloring books and
crafts kits. Both of them had plenty of money to go to another store. The
problem came when Rob spotted Uno cards and wanted six packs – at $6.50 each. I
reminded him he didn’t have enough money, but he could get two packs.

But – if he only got two packs, it left the stacks of cards in the stores with
uneven numbers (a new thing of his OCD – all stacks in the stores must be equal
and if they aren’t, he insists on buying the “extra” ones so the piles are
even!) so he put them all back and grabbed a pack of stretchy tubes. All was
fine until we walked a little farther and he saw a train set – and he wanted it.
He ran to put back the tubes and grabbed the train set. It was $55. I reminded
him he didn’t have enough money and that he needed to put it back.

For someone who says very little, he got his point across – he wanted the set
and he was going to get it. So I had to keep reminding him he didn’t have enough
money and he had to put it back. He even tried to put it in Mandy’s cart to
convince her to buy it for him. She said no and for him to put it back. He
finally did, went back and got his tubes and started walking again – only to
spot a box with loose train cars. He grabbed the whole box (they were $5 each
and there were probably 10 or 12 in the box) and put his tubes back.

He was very determined to get these. I told him he had money to get three of
them, but not the whole box. He tried to intimidate me (HA!) by rocking and
humming. He was anxious and he wanted those cars. I told him he could get three
or zero. Those were his choices. He was not pleased. After a few minutes (I
really think he was hoping Mandy would buy them for him!), he put them back on
the shelf and grabbed his tubes.

Then he saw a small box of Legos. I told him he had the money to get those so he
grabbed the box. But as we were walking he spotted another pack of Uno cards and
grabbed those (These were special edition ones that were $12) So we had to talk
again about how much money he had and what his choices were. After putting the
Legos back and grabbing the cards, then deciding he wanted the Legos and not the
cards, we finally made it to the front of the store where he wanted a pack of
construction paper.

He had the money, so I told him to get a pack, but then he realized that if he
took one pack, the stacks wouldn’t be even so he put it back and straightened
the piles up. We finally made it to the checkout only to have Casey dart away to
check another spot for coloring books.

I’ll be honest. I felt terrible about Rob not getting the train he wanted so
badly. Part of me wanted to give in and tell him I would buy it for him. A big
part wanted to do that, but – another part was saying he needs to learn that we
don’t always get what we want. That sometimes, you just don’t have the money or
it might rain and cancel plans or you might be having sloppy joes for supper
instead of tacos.

It’s a hard, hard lesson for all of us to learn. Autism or not, we want what we
want when we want it. Casey used to throw herself to the floor kicking and
screaming if she didn’t get what she wanted. While Rob has never done that,
sometimes his disappointment is even harder to handle.

But – it’s my job as mom to teach them about money. They may never be able to
handle their own money, but they are capable of understanding they can’t always
get what they want. It’s my job, autism or not, to help them understand life
isn’t always perfect. And, let me tell you – that lesson sucks. I want to give
all of my kids everything they want. It’s a huge struggle for me to not spoil
them all.

So – we’ll keep talking about money and we’ll keep talking about what we can and
can’t buy. And I’ll keep telling them both how proud I am of their choices and
that I know it’s hard to choose when you want lots of things. That’s all any of
us can do.


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Posted on December 18, 2022December 18, 2022


AUTISM AND A VERY, MERRY CHRISTMAS

Autism and a Very Merry Christmas

As I sit here writing this, I can hear Rob in his room saying, “Trrreeeeee.”
He’s happily building Christmas trees with his Legos. Casey is listening to
Christmas music on her iPad. All of the trees are on and everything is ready for
Christmas, except to finish baking. This is the most magical time of the year in
our house.

We have visited several light displays. Casey and Rob have shopped and wrapped
presents. Casey carefully looks under the tree several times a day to make sure
her presents are still there. She never touches them, but she does encourage
Blue, our dog, to nose through them so she can peek at other presents easier.
(Blue loves to unwrap presents!) Casey knows the plans for Christmas Eve,
Christmas Day and the day after Christmas.

Some of the coolest moments happened a few nights ago. Santa Claus visited our
ASK Autism group and everyone got to meet him and have their pictures taken.
Because we are a small group, even the children who are scared of Santa were
able to talk to him. Casey was so excited that she couldn’t sit still and when
she heard Santa’s sleigh bells as he came in the door, she jumped up and watched
with a huge grin as Santa came closer.

Rob sat near Santa and, after some encouragement, told him he wanted Legos for
Christmas. He was happy, but not nearly as excited as Casey was. She told Santa
she wanted a big Grover and a Big Bird. Then she watched as the smaller children
(yep – she managed to talk to Santa first) went up to Santa.

Rob will take the week as it comes. He’ll do whatever, whenever and go with the
flow. Casey will have some stressful moments when the excitement gets to be too
much for her and she needs to decompress. She’ll be on edge, wondering if she’s
been good enough for Santa to bring her gifts and won’t sleep on Christmas Eve
until she is sure he has visited us. It’s hard to watch at times. I tell her all
the time she’s been so good that I’m sure Santa will leave her some amazing
presents, but as much as she loves holidays, she gets anxious about them, too.

She will want to be sure everything she thinks is important happens and she’ll
be very serious. She will have fun, too, but she will constantly be thinking of
the next activity. It’s a hard week for her, even as she loves it all.

Our Christmas won’t look like yours. Santa will bring things my kids enjoy –
socks, Sesame Street, crafts, construction paper, Legos and cards. I don’t care
that some people won’t buy things that aren’t age appropriate. I buy what they
like – same as I would anyone else. I hope each of you does the same and are
able to ignore people who insist that you buy things for your child’s age and
not their interests.

We usually have a fairly relaxing holiday that is spread out over a few days.
This works best for our family. We don’t go to a lot of parties – we choose
things we can do without large crowds or lots of noise. Sometimes, it’s a tough
balance between the needs of my “go go go girl” and my “stay at home son” but we
manage pretty well, usually.

Merry Christmas to each of you! May your holiday be filled with love and laughs!


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Posted on December 11, 2022December 11, 2022


AUTISM AND A QUESTION

Autism and a Question

Who makes the rules? I know that seems like an odd question for a Christmas
post, but really, I do want to know. Who makes the rules? The rules that decide
why behaviors with autism aren’t “right”? Who decides?

I took Casey and Rob to see the Wild Lights at a zoo last night. Casey was so
excited that she giggled the whole drive (about an hour and a half). Rob
reminded me the whole way where we were going and he was going to see “boo”
(blue) lights and a lake.

Our first stop is almost always a train ride that loops around a small part of
the zoo. We got in line and Rob was so excited that the line was along the
tracks and he could watch the train coming and going as we waited to buy our
tickets. They both had huge smiles on their faces. Rob was humming and bouncing,
but not moving out of one spot. Casey was smiling and rocking slowly back and
forth. Both were obviously excited.

In front of us was a man, woman and five kids, ranging in age from maybe 1 to 6
or7. All of the kids, except the baby who was being held) were dancing around
and squealing – just being kids, until the oldest decided to climb over the rope
barrier and pull at the strands of lights covering the bushes. Then the other
ones followed suit. Casey and Rob just watched, but really, couldn’t have cared
less what the kids were doing. The parents, meanwhile, are completely ignoring
the fact their kids are pulling lights off of the bushes.

Finally, the mom yelled at them and made them come to her. Casey giggled at the
kids getting into trouble, but it wasn’t obvious. So the little angels are
standing in a group whining for everything under the sun and the mom glared at
Rob. He was standing well out of their way (he hates getting too close to
anyone!), but he was humming and rocking a little louder and faster and
apparently, she didn’t approve of the noise.

I’ll be honest, if he was loud, I would have asked him to use a quieter voice,
but we were in a line of people all talking and laughing and beside a set of
tracks with a train coming and going every few minutes. I barely heard him – and
I was standing right beside him. So, I watched her and decided since I was
wearing a Grinch hat, I might as well act like one. She whispered something to
her husband and pulled the kids farther away from us (cause, you know, autism is
as contagious as COVID) and glared again. And the kids yelled louder.

We stepped up as the line moved. She turned to me and asked me not to crowd
them. At this point, we were probably three feet from them – in a line. I smiled
and said we wouldn’t crowd since her kids needed plenty of room to move. (not
being sarcastic – we all know how kids are in line!) She popped back with “at
least they aren’t making that annoying humming noise” Without even thinking I
said, “yep, you are right – yours are destroying the hard work of the zoo
workers.”

By then, her husband had their tickets and they moved on (and thankfully, were
the last passengers on that train!) and the sales guy was laughing when I
stepped up. “Good for you!” was all he said before “Merry Christmas.”

Casey and Rob enjoyed the train ride and seeing the lights in a tunnel, but I
was wondering – who decides it’s ok for kids to cross barriers and pull at
lights, but not to hum and rock in place?

When they needed to use the restroom, we ran into another “rule-maker.” The zoo
has family bathrooms that just have one toilet, but it’s a bigger area if you
need to change an adult. No one was using it, so I sent Casey in and when she
was done, Rob used the bathroom. Meanwhile, another lady was sitting on a bench
watching. As I waited for Rob to come out, she decided to tell me how family
restrooms were to be used – and it wasn’t for people “like” us.

I thought maybe she didn’t realize they had autism, so I tried to explain. She
cut me off and said they didn’t need to use the family restroom, as they were
capable of going into the restrooms. I tried again to explain that it wasn’t
safe for Rob to go in alone and neither could be trusted to wait outside while I
helped the other. She declared again that they weren’t little, weren’t
handicapped and that I just didn’t want to wait in the line like I should.

It’s Christmas, so I smiled and told her she was certainly entitled to her
useless and unwanted opinion and to have a Merry Christmas. But, really – who
decides the rules for the family restroom? Who decides that autism isn’t a
disability? Who decides what’s best for my kids? (I can answer that one – me! It
was just rhetorical.)

Casey and Rob were completely unaware of her, as they were distracted by the
light show on the lake, but as we sat and watched, I wondered again. Who makes
the rules? And what gives perfect strangers the confidence to believe they need
to share their opinions with me? I didn’t tell the mom by the train her kids
were brats and she needed to stop them. What gives her the right to tell me?
(Besides just bad manners)

And now I’ll give you the answer to my question – who makes the rules? Society.
But the thing is, the rules change and need to be changed. So don’t avoid taking
your child anywhere! Only by taking our families to the zoo and to the park and
to restaurants and to stores will society begin to know us. And once they know
us, and autism, they won’t be as concerned about it. We’ll be just another
family waiting in line for a Christmas train.

Don’t be scared to go out. Prepare yourself and enjoy. Maybe you’ll have to make
short trips, at first – only you know what your child can handle. I’ll be honest
– there are places I don’t take Casey and Rob, but it’s not because I’m
concerned what others will think. I know what they can handle and what they will
enjoy. I wouldn’t drag a typical child to something they wouldn’t like – why
would I take a person with autism?

Perfect your glare. Stiffen your back and remember – you and your family have
every right to enjoy and experience the same things every one else does. Remind
yourself this quote by Dr. Seuss “Be who you are and say what you feel, because
those who mind don’t matter and those who matter don’t mind.”




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Posted on December 4, 2022December 4, 2022


AUTISM AND THE CHRISTMAS LIST

Autism and the Christmas List

Every year, Casey has a list of things in her mind that we have to do for her to
have a wonderful Christmas. It’s never anything too complicated, but she’s
already reminding me of what all she wants to do.

They were both excited to go to the Christmas Parade. It was so cold and windy,
but they were bundled in sleeping bags. I was kinda hoping it would rain so I
would have a good excuse not to go, but after seeing how happy they both were,
I’m so glad we got to go. Casey started waving to Santa when he was 3 or 4
blocks away and didn’t stop till she couldn’t see him anymore. It completely
amazed her when Santa waved back to her. She giggled the rest of the evening
about that.

Rob has learned to cover his ears as soon as the fire trucks get close to us.
This is such a huge step for him – to be able to take care of what he needs by
himself. Three years ago, I had to stand behind him and cover his ears for him.
Last year, I had to remind him the trucks would be loud. This year, he handled
it all on his own.

They were both really surprised when I took them to a light display the night
before Thanksgiving. It was a mild day and seemed to perfect to not take
advantage of it. They both enjoy the music and light show, but once again, I was
reminded to not get too comfy when we are out and about. When we stood up to
leave, they both took off for the car and I had to grab both to keep them from
walking right into the street. Proof once again that just because something
hasn’t happened in a while, doesn’t mean it won’t. They both got a stern lecture
about staying with me, but they were more focused on a snack than their own
safety.

Casey has finished some of her shopping and all I’ve heard for the last hour is
she needs to wrap it – tonight – before her bath. And that she still needs to go
shopping and that she wants to go – now. Rob has almost finished his shopping.
He likes to pick out gifts, but he’s not worried about it. He knows I’ll make
sure his shopping is finished in time. Once December gets here, Casey is in
Christmas mode.

We got to enjoy a Christmas movie Saturday morning (our local theater plays
sensory friendly movies several times a year) and then a light/inflatables
display at our fairgrounds Saturday evening. Two more things checked off Casey’s
list.

She has reminded me that we need to get grandma and go to the “biggest
fairgrounds” and see lights and have a snack on the way home. She has reminded
me that we haven’t gone to the zoo lights, yet, and last year, we went the
Monday after Thanksgiving, and it’s not right we haven’t gone, yet. (The fact
that it’s been cold and rainy doesn’t matter to her – only the schedule in her
mind).

It can be hard to find Christmas activities that you feel safe taking your child
to. Just remember that your Christmas traditions don’t need to look like mine or
your best friend’s or your neighbor’s. Your traditions should fit your family.
Maybe a movie night at home with everyone wearing PJ’s and throwing pillows and
blankets on the floor in the living room.

Maybe it’s making cards or pictures as gifts. Maybe it’s putting lights and no
ornaments on the tree. Whatever your traditions are, enjoy them. Don’t worry
about everyone else – just enjoy the magic of the season with your family.


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Posted on November 6, 2022November 6, 2022


AUTISM AND THE LOVE OF A NIECE

Autism and the Love of a Niece

I haven’t shared this, yet, but a month ago, we had a perfect little miracle
join our family. We lost Raylan a year ago and on his birthday, his miracle baby
sister was born. To say we feel blessed is an understatement. It was an instant
love for all of us. Words can’t describe the joy little Rosie has brought to us.
And she showed again the big differences in the way Casey and Rob feel about
things. For anyone who still believes those with autism don’t show feelings,
they need to watch Casey and Rob with the baby.

For months, Casey talked about Rosie. She wanted to shop for her. She wanted to
plan the baby shower. She wanted a new dress for the shower and simply couldn’t
wait. We did have a few bumps when I realized that she thought Rosie was
actually my mom (her name is Rose) and she didn’t understand why we were buying
Grandma baby things, but she went along with it because… well – it’s shopping!

Rob never mentioned the baby. He firmly said no to the baby shower. He didn’t
get excited. He didn’t ask questions. He didn’t worry that we were calling
anyone Rosie. He just went along with everything with his usual laid back
attitude.

But then…. Rosie was born.

And Uncle Rob cannot get enough of her. When I took them to meet Rosie for the
first time, Rob couldn’t stop grinning and giggling all the way to Mandy and
Cory’s house. “Rosie. Rosie. Rosie.” He looked at her and grinned. Casey was
rocking back and forth with a huge grin on her face as she watched us with the
baby. She couldn’t wait to hold her. She was a little nervous, but so happy.
Until… she touched Rosie’s cheek and hands – and Rosie moved her arm. Casey
jumped and was done holding her. It was too funny – Rosie’s little movement
scared Casey. I don’t know why – maybe she thought since she was so little, she
was a doll.

Rob wanted a turn, too. Only – he didn’t want to give her up. He pulled her
right to him and carefully touched her cheeks and her hands. I asked if he was
done and he said no. He just studied her and held her close.

The second time they met, Rob was ready. He cuddled her close again and her
movements fascinated him. But the best part – he leaned down and carefully
kissed her cheek. Mandy and I were both close to tears to see that. His eyes
were twinkling and he had the cutest grin on his face. He is so in love with
that little girl. Casey held her again – but only to get a picture taken and
then she was done. Now that the party and shopping are over, she isn’t all that
interested right now. And she insists on calling her Rosalyn, not Rosie.

I still hear others say people with autism are unable to show emotions or form
close attachments. I’ve yet to meet someone who was unable to find humor or show
love or compassion. Maybe it looks a little different than what we expect. Maybe
they can’t say the words, but their eyes will show their feelings, whether it’s
love or humor or sadness or anger. Learn to read eyes and you will find the way
to someone’s true feelings. Let go of the expectations you might have of how
someone shows love and meet them at their level.

Autism may prevent Rob and Casey from saying “Love you” to little Rosie, but
their shining eyes and huge smiles are proof that she is a well loved niece
already.


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Posted on October 30, 2022October 30, 2022


AUTISM AND FAMILY ISOLATION

Autism and Family Isolation

I’m not telling any of you anything you don’t know. Autism is lonely at times.
Lots of times. Not just for the parent who may feel no one can really understand
what their life is like, but also as a family. While others may be talking about
their wonderful vacations, autism families may just be hoping for a night of
sleep or being able to eat out as a family. Some days, autism is just tough.

I remember the isolation. I was so happy for my friends when they got to take
their kids places, but …. I’ll admit…. I was jealous at times. And I hated that
Mandy was missing out on those same things. They never stayed in a hotel until
they were 6, 7 and 10. It simply wasn’t possible. Rob and Casey were unable to
sleep at home, let alone a strange place. And their noises were impossible to
quiet. It was safer to stay home.

In 2002, we took them to the Smoky Mountains and to the beach in North Carolina.
By then, their behaviors were calmer and they were both less likely to dart
away. We didn’t stay away from home long, but it was an amazing trip for all of
us. We even went back to the Smoky Mountains a few years later. (While they love
the beach, the mountains are even more calming to Casey and Rob).

But, in our every day lives, we were isolated. We didn’t go to movies. We didn’t
go out to eat very often – and never somewhere that would take long to get our
food. When the kids were older, we added a backyard pool and always had friends
over. Those were the best times! I still felt lonely, at times, though. It’s
hard to describe what our lives were like to others. And, honestly, I didn’t
want to try. Back then, I was embarrassed by some parts of autism. Now, I just
don’t care. If someone doesn’t like us, they are welcome to stay away.

The loneliness is a big reason I would encourage each of you to find a support
group. I helped organize one in our area many years ago and stopped going for a
long time. Last year, we started another one and it’s growing. It feels so good
for even experienced parents like me to be around other parents – both
experienced and new – and just know that I’m not alone in this walk with autism.

It helps to hear others’ ideas for things to try with Casey and Rob. Sometimes,
you can’t see new ideas because you are too close. Outsiders can think more
clearly about the situation.

The best part, though, is we plan activities for special needs families. We had
a race car visit us and a fire truck came another night. Today, we had a trunk
and treat for special needs families. To let Casey and Rob walk around and be
themselves is just the most amazing feeling! Everyone knows them and everyone
keeps an eye on each other. It’s a wonderful feeling to be part of a huge group
that loves and accepts Casey and Rob just as they are.

If there isn’t an autism support group in your area, start one. You can
advertise on Facebook or in school newsletters. You may not have a huge turnout,
at first, but keep trying. Even if you just become friends with one other autism
parent, that’s one more friend for you. The main goal for our group is that no
one feels lonely and it’s a goal that we take very seriously. Find a group. Find
support. You will all be better off for it.




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Posted on October 23, 2022October 23, 2022


AUTISM AND THE LOVE OF SIBLINGS

Autism and the Love of Siblings

Anyone who has followed our story knows I often talk about how close all of my
kids are. Mandy has always been Casey and Rob’s biggest defender – and tormentor
– and teacher – and the one who has gotten hurt the most by autism. She will
deny it forever, but I know that there were days she didn’t like autism very
much. But – we all have those days. Now, Rob has Cory to look up to and model.

Keeping Rob’s face clean shaven is a chore that neither of us particularly like.
I leave it up to him when he wants me to shave him. A few weeks ago, he decided
he was going to grow a beard like Cory’s. Every time I mentioned shaving, he
covered his face with his hands and said no thanks! I had my doubts that he
would grow a full beard, but it’s his choice. He lasted longer than I thought
before he asked to shave. I think he was disappointed his “beard” wasn’t as full
as Cory’s so he wanted it gone.

Rob doesn’t like new shirts. He insists on the same type of shirt with the
sleeves cut off. We were in Kohls a few weeks ago and Mandy found a shirt for
him to look at. He refused it – tried to put it back on the shelf. Until Mandy
said the magic words “Cory has one like this.” So Rob bought it.

Rob is a follower. He watches Casey, Mandy and Cory for signs of what he needs
to do. He won’t wear a coat unless Casey does and he chooses which coat to wear
based on what she’s wearing. He wears boots when she does (and doesn’t
understand that sometimes, girls wear boots to dress up a little ) and he checks
that there are two lunch boxes every morning.

Several months ago, Cory got a new truck. We were at their house one day and a
friend of Cory’s stopped to see the truck. Rob was outside, too, and so happy
and excited that he could hang out with Cory and Collin as they talked about the
truck. That’s what Mandy and Cory do for Casey and Rob – they include them in
everything. So many siblings are tired of autism and disabilities and I
completely understand that, but somehow, I got lucky enough that Mandy and Cory
want to spend time with them.

Casey doesn’t tend to follow others. But she is careful to watch out for Rob
when they are together. And Rob knows that Casey feels safer holding onto
someone in crowds so he holds her wrist (she is not a big fan of holding hands
very often) or puts her hand on his arm. They both feel safer when they are
together and as much as they annoy each other at times, I wouldn’t want to be
the person who tries to hurt one while the other is there. I think there would
be a fight – and my kids are too stubborn not to win.

But for all the ways they protect each other, they are just as likely to annoy
the other one. Just like typical siblings. She’ll change the radio station away
from the song he is listening to. He’ll play his iPad loud while she is trying
to watch a video. They rush to get to a certain chair at grandma and grandpa’s
house and will take it from each other. He will touch her plate and giggle. She
will open his door and turn on his light (he hates that!).

We went to a Halloween dance the other night and once again, I heard “They
aren’t anything alike – why not?” For some reason, since they both have autism,
people expect them to be just alike. Even twins are not exactly the same in
every way! While my brother and I are a lot alike in some ways, we are very
different in others. I’m not sure why siblings with autism are expected to
behave exactly alike.

Casey, Rob, Mandy and Cory are alike – and different. They are each perfectly
who they are meant to be! Autism doesn’t define them or our family!


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