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Posted on September 12, 2021September 12, 2021

AUTISM AND ANOTHER FIRST TIME

Autism and Another First Time

I’ve always told other autism parents to brag about their kids – brag about
every small step they take! Who cares if it takes them a little longer to master
something? The point is – they did it! And you deserve to cheer for them just
like every other parent.

Today – it is my turn to cheer again! Well, mine and several other parents.
Yesterday, I got to go to the movie with Casey, Mandy and Rob! We’ve gone to
drive in movies several times, but Rob has never been in a movie theater. It’s
just too loud and his claustrophobia can get bad in dark places, especially with
a crowd.

Our local movie theater did a sensory friendly movie. They have done it before,
but we had never been able to go. A sensory friendly movie means the lights
aren’t completely dark and the sound is kept lower. Talking during the movie
isn’t a big deal (Or squealing, hooting, or humming!) Moving around is fine (as
long as the moving around doesn’t put anyone else in danger) It was the perfect
time to see if Rob would enjoy it.

Casey has been to movies before and seemed to enjoy, but she did get antsy and
want to go to the bathroom or anywhere else besides sit and watch. When we got
to the theater, one of their friends was there, too, so we could all walk in
together. They each got popcorn and a drink. I turned around and had lost Rob,
already – he didn’t even wait for me – he just walked into the theater. 🙂

I let him pick the seats, sort of, as he was going to walk clear to the front
row. He had a struggle with the seat, as he couldn’t figure out how to sit on
the folded seat. He finally put his drink in the cup holder and carefully sat
down. Casey panicked when the seat rocked back and jumped up. She wanted to move
because she thought her seat was broken. I told her to just slowly lean back –
that the seat rocked and she was finally able to relax in the seat. But, it
showed again that we need to show our people with autism new things – not just
expect that they will try it because we say it’s fine. I had to hold her popcorn
and her hand before she was able to relax. And, that’s fine – it’s just
something I forget at times. Even as brave as she is, she still gets nervous and
needs my hand to feel safe.

Rob loves popcorn and that kept him entertained until the movie started. The
owner of the theater came in and told us the sound guy was going to turn the
sound off completely and slowly turn it up. We were to tell her when it was okay
so everyone would be able to enjoy the movie. This is another reason I love
living in a small town! How many big theaters have that kind of service?

Rob was completely relaxed through the movie and often had a grin on his face. I
got worried about him once, but it turned out he needed the bathroom (and, of
course, so did Casey! 🙂 ) and he watched the rest of the movie happily. I wish
I could have gotten a picture of him watching – he looked so happy and relaxed!

Honestly, I was ready to cry. So many times when I took Mandy and her friends to
the movie, I wished Casey and Rob could go. I wondered if they would ever be
able to enjoy things like movies. Yesterday, I got my answer! True- it took 29
years, but it happened and I’m still so excited about it!

I’ve said it before and I’ll remind you again – never, ever stop dreaming for
your child with autism! As long as you keep dreaming, your child will keep
trying. Isn’t that what all parents do? 🙂

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Posted on August 29, 2021August 29, 2021

AUTISM AND LETTING GO OF EXPECTATIONS

Autism and Letting Go of Expectations

The title may throw you off a little. Before anyone thinks I’ve lost my mind and
am letting Casey and Rob run the house, the expectations I’m talking about are
the ones everyone has about what a happy life looks like. Autism changes your
perspective, but not always quickly.

Many people seem to think a happy life is one with lots of stuff, lots of
travel, lots of people around. Big, fancy parties for birthdays and expensive
presents for Christmas.

Let me paint another picture for you. Yesterday was Rob’s 29th birthday. I am a
birthday person. I love celebrating the person that day – not always huge
things, but things to make sure that person knows they are loved and special.
With autism, I had to let go of my idea of the perfect birthday and change it to
fit Casey and Rob’s needs and wants.

If you ask Rob, my guess is, if he was able to say the words, yesterday was
perfect to him. He got to sleep in as long as he wanted. He had his favorite
doughnut for breakfast. He had nuggets and watermelon for lunch. He went to
Mandy and Cory’s house.

He chose KFC for supper. He had presents that he loved (foam to cut, cards to
rip, a new sign, new headphones, McD card and money) and people he loves to have
cupcakes with him. He sang “Happy Birthday” to himself. And then he disappeared
into his room for quiet time.

For him, it was perfect.

Before autism, I dreamed of parties with lots of kids, lots of noise, games… You
know what I mean. After autism, I struggled to change my dreams into a happy
reality for Casey and Rob. When they were little, their cousins came to their
birthdays, but it wasn’t the same. I dreamed of friends for them.

Mandy had a few parties with friends and Casey and Rob were always included. But
I wondered – did they ever wonder why she had so many friends and they didn’t?
Did they feel lonely? Casey has always been more self-confident and has never
seemed to care about having friends. As long as she gets to go places, she is
happy. (and by places, I mean – to the park to walk or to the pool – nothing too
fancy 🙂 ) Rob has always wanted the approval of others. And still does – that’s
why anxiety is such an issue for him.

Autism will change your idea of what is fun, too. If you let it, autism can be
an amazing teacher. Living with it will show you that what kind of car you drive
isn’t important, as long as it gets you where you want to go. It will teach you
that new and different foods aren’t that important and that there is comfort in
sameness. Autism will slow your life down. You will learn to love and brag about
the smallest steps forward your child takes – and you will appreciate those
steps more than many “typical” parents will, simply because you know the
struggle it took to get there.

My expectations of huge birthday parties has changed. Holidays are different
than I thought they would be when I had kids. I don’t take long vacations
anywhere. I don’t have a date when I will be “free” and the kids living on their
own. I know every one of you has dreams for your child – expectations you
planned on. Maybe you thought you would be sitting in the stands watching your
child play football. Maybe you thought your child would take center stage in a
musical. Don’t give up those dreams, entirely – just adjust them. I constantly
tell people they have no idea what life will be like for their child. You simply
can’t know. You do your best with the information you have and you move on.

I never want you to give up on your child. Push them to try new things – to look
away from the iPad – to taste a new food – to wear a new shirt. Small things add
up quickly.

But – I also don’t want your expectations of what life would be like for your
child to get in the way of what an amazing life you can have with autism. Autism
is tough – you will never hear me say it’s easy. There are days you will want to
cry and scream and give up. I know that. But – there is something good in every
day, if you can stop the tears long enough to really look. Change your
expectations of what a happy child looks like and you may see that your child is
very happy right now. And if your child is happy, you have done a wonderful job
as a parent. Pat yourself on the back!

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Posted on August 22, 2021August 22, 2021

AUTISM AND GOING BACK TO SCHOOL

Autism and Going Back to School

Mandy wasn’t always happy about going back to school, but for the most part,
Casey and Rob were. Rob wasn’t happy when he had to go for two years without his
sisters, but he loved his teacher and the aides in the classroom, so it wasn’t
much of a battle. But – for me, as happy as I was to have some breathing time
alone, it was scary, nerve-wracking and intense. Honestly, I worried just as
much about Mandy as Casey and Rob.

They had aides and I knew their teachers well. Because of their autism, people
were always watching out for them (the fact that Casey run off the school
playground more than once made everyone aware that she needed eyes on her at all
times – and they just assumed Rob would be the same way!) but Mandy – she was so
little and so alone. She knew kids in her class and I was on the PTO so was in
her school often, but still…. I worried about her.

So I’m sure you are feeling it – whether you are a teacher, an aide or a parent
– back to school nerves. I won’t lie – I’m relieved it’s not me, anymore! We
were lucky and only had one teacher that caused major issues and another that
was a pain in the butt, but by then, someone like her couldn’t phase me. 🙂 Rob
always had amazing teachers and aides. Mandy has said the school district
decided they didn’t want to deal with me anymore, so they put him with teachers
I knew and liked. I seriously doubt it, but – I was never shy about fighting for
the kids, so maybe…. 🙂

Anyway – my best advice for back to school with autism.

1. Prepare your child. Only you know the best way to do this for your child.
For us, I made paper chains to count down the days until school. Casey
understood the calendar, but Rob still can’t be bothered to look at one, so
this was a good visual for him. I talked about school all the time and made
sure they were with me to pick out supplies – not just to prepare them for
school, but so they could get exactly the back pack and lunch box they
wanted.
2. Prepare the teacher. If your child has had this teacher before, obviously,
this is an easy one. You can simply update the teacher with any new quirks
your child has developed. If you have never had this teacher, then make a
list. Yes, you will have back to school paperwork to fill out, but this is
different. Write down what your child is afraid of – loud sounds? the
restroom? crowds? storms? Write down what sensory issues your child has –
heat/cold? certain foods? Clothing/shoes? Write down what your child does
when he/she is beginning to get overwhelmed – rubbing ears? flapping?
rocking? humming? Write down what helps your child calm down – a quiet
place? A hug? a favorite books? a walk? The more info the teacher has, the
better the year will be for all of you!
3. Once school has started, get in the habit of texting the teacher if there is
anything going on at home that could bother your child at school. Didn’t
sleep? Didn’t eat? a sick sibling? Anything! I know so many people that want
to keep things private (a divorce, a death) but it will help your child’s
teacher and that will help your child. Don’t expect a long text
conversation, as the teacher is busy, but let them know. The more
information they have, the better the outcome for your child.
4. If you have a lot of info, send an email. Don’t call the teacher, unless you
have been given a safe time to do this. If your child is in a regular ed
class, teachers have 20 – 30 kids (and no aide to help!). A special
education class is smaller, but with so many different needs, the teacher is
swamped. Only call for an emergency and if possible, leave a message, such
as you are on your way to pick up your child. It’s rare, but if the teacher
consistently doesn’t answer you, ask why. Always talk to the teacher before
you badmouth them to the principal. Be an adult and hope the teacher is,
too. There is always time to go above the teacher’s head if you can’t work
it out. Be kind, first. Always.
5. Take your child to the school. Make sure they know where their classroom is,
where the bathroom is and to meet the teacher. Take pictures of everything
and make a book to read to your child. Casey’s preschool teachers took
pictures of anything she might need at the school and made a book for her.
She looked at those books until she got to junior high when they finally
fell apart.
6. Talk about school. Even if your child isn’t verbal, they are listening.
Talk, talk, talk. Tell them happy stories from when you were in school.
7. If you have concerns as school goes along, email the teacher with your
concerns. Phone calls are nice, but hard to schedule. Give the teacher a day
or two to respond, then call and leave a message.
8. When there are problems, be nice. Always, always be nice. Until it’s simply
time to not be nice. Then be politely un-nice. 🙂 Yep – I know that sounds
silly, but – you can be firm and demanding without being a jerk about it.
Your child has rights and you need to make sure the school understands you
know those rights. (If you aren’t sure, take another parent or a parent
advocate to meetings with you. Or ask your county board of developmental
disabilities for a service and support coordinator) And understand, there
will be times when you can’t be nice. And that’s ok, too. Just be nice as
long as you can – then be ready to rip into whoever needs it.
9. Say thank you. You have no idea what it means to an exhausted teacher to
know they are appreciated and that you do know how hard they work. A short
note, a small gift – anything will be deeply appreciated!

You are your child’s strongest ally and advocate. When you feel like giving up
(and you will), have a good cry or tantrum, and move on. You can do this, I
promise! If I can fight for years for Casey (and Rob, to a lesser degree, – he
didn’t have as many serious issues, just lots of milder ones!) you can, too!

Good luck and make this the best school year, ever! 🙂

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Posted on August 15, 2021August 15, 2021

“DO YOUR KIDS WITH AUTISM TALK?”

Do Your Kids with Autism Talk?

Most of the time, when someone learns Casey and Rob have autism, this is one of
the first questions I am asked and when I say, yes, they can talk, I am told how
lucky I am. I’m not denying that I am extremely lucky, but…. talking and
communicating are too vastly different things.

Right now, Rob is talking in his room. Long black train, Grandpa Bill, Christmas
trees, and tomorrow’s Hopewell. Casey is laying on the couch giggling about Elmo
learning his ABC’s. Yes, Casey and Rob can talk – for hours, loudly, but, they
have a difficult time communicating with me.

They can answer simple questions, most of the time. “What did you eat?” “What do
you want to eat?” “What store do you want to go to?” “Do you want….?” Easy,
short questions that have literal answers.

But, communicating, that’s another story. I have several examples of what I
mean.

Next week is Rob’s birthday. I have asked him several times what he would like
for his birthday. “Presents.” I asked what kind of presents. “Presents.” He
doesn’t understand that I’m asking what he wants inside the wrapping paper, even
when I change the way I word my question.

Friday, when I dropped them off at Hopewell, Casey couldn’t get her door open.
She was in the backseat and the child lock option was on. Rob flipped the switch
and got out. She couldn’t tell me she needed help and since I was watching to be
sure he walked straight around the car to the sidewalk, I had started pulling
away before I noticed she was still in the car. (Mother of the Year minute,
right there! 🙂 ) She simply didn’t know she could say “stop!” or “help!” Other
times, she can ask for help – but it’s not a consistent habit.

Their iPads updated one night. Casey asked for help the next day. Since the
iPads rarely update at the same time, I didn’t think to check his. Instead of
coming to me, he just laid it on his bed and found other ways to occupy himself.
(He doesn’t usually spend as much time on the iPad as she does – he has several
other things he likes to do.) But, still – he didn’t know how to ask for help,
even though, most of the time, he can. His headphones stopped working and again,
instead of telling me, he found an older, small pair and used them.

A few years ago, we drove to a place about an hour from home to look at
Christmas lights. On the way home, he started saying his anxiety phrase –
loudly. Mandy and Cory were with us and even they couldn’t calm him down. When
we got home, he ran to the bathroom. Since we were in the car, he didn’t know he
could still say he needed to use the bathroom and we would find a place to stop.

It’s little things like these that show how much their communication skills are
affected by their autism. Yes, they talk – most days until it’s just a long,
loud blur in my ears. But, they don’t really communicate with me. I can’t ask
them what they did during the day. I can’t ask what their favorite color is or
what movie is their favorite. I can’t know for sure what gifts Rob would like. I
can’t know for sure when they are feeling sad or sick or tired. My life is a
series of best guesses. Most of the time, yes, I get it right. (After all, I’ve
lived with them for 33 and almost 29 years! 🙂 ) But, I would so love to have a
real conversation.

What do they think about having a nephew in December? Where would they like to
visit? Does anyone scare them? Or bother them when they aren’t with me? (that’s
a huge fear – it can take weeks for Casey to say anything and it’s like pulling
teeth to get info from her. Rob won’t say anything at all.)

So, yes, I am very grateful that Casey and Rob can talk. I love that I can get
some answers from them. I am one of the lucky parents and I thank God for that
every day. But, please remember that the ability to talk does not mean someone
can communicate their needs, wants and fears. That takes patience and years of
being around someone to understand. Learn to read your child’s eyes. The eyes
truly are the windows to the soul – you will see how much they love you in their
eyes, when you learn to look instead of listen.

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Posted on August 1, 2021August 1, 2021

THE DIFFICULT DANCE OF PARENTING AUTISM AND TYPICAL CHILDREN

The Difficult Dance of Parenting Autism and Typical Children

Being a parent isn’t easy. Besides the typical day to day care, you are also
responsible for helping your children grow into loving, kind, responsible
adults. And when you add autism into the mix, it becomes a dance of never
letting the typical sibling feel like their sibling with autism is more
important than they are.

I’ve heard so many horror stories of the typical sibling ending their
relationship with their parents so they can avoid being around the special needs
sibling. Or, in the case of one family I know, they ask their elderly mom to
move closer to them – but only if she puts their special needs brother in a home
and not go visit him. I simply can’t imagine that kind of pain.

While Mandy is quick to say that she never felt resentful of Casey and Rob
(except for when they took equine therapy – she was obsessed with horses and
wanted to ride, too! Thankfully, the stable allowed her to ride at the end of
the sessions, but I never felt like it was enough), I remember times that she
was mad at them and for good reason.

Rob cut apart a necklace that was very special to her. Casey chewed the feet off
of all of their Barbies. Rob chewed the horns off of her unicorns. Casey (the
girls shared a room) wasn’t as interested as Mandy was in having a clean room.
Rob did this – Casey did that. And every time, my heart broke for Mandy. All I
could do was tell her they didn’t understand. In the case of the necklace, I was
exhausted, stressed – and I didn’t handle it well at all. Mandy was furious – I
simply couldn’t handle it…. and I told her she shouldn’t have left it where he
could get it. Knowing even as I said the words, she didn’t leave it lying
around. Knowing I wasn’t handling the situation right at all. And knowing I
would be crying ugly tears that night in bed. I was failing her.

That being said, Mandy was also the first to defend Casey and Rob. And when she
lost her temper, she was a force to be reckoned with. She might have inherited
my temper – seeing someone treated unjustly still brings out that side of her.
And I’m proud of that. I got a call when she was in 6th grade. A brown=nosing
classmate told the teacher Mandy was mean to her. The teacher, assuming Mandy
would never tell me she had gotten in trouble, called me. Mandy told me right
away what had happened – and it was nothing like the teacher had been told.

The teacher felt I should take Mandy for counseling and possible medication for
her “anger issues.” I’m sure after our conversation, that woman thought I needed
the same, but I let her have it. Mandy admitted she did call the other girl a
name – but only after the classmate made fun of another girl in their class. I
also got a call from the high school once. Mandy happened to overhear a boy
calling Casey a name – and again, she let him have it. She was called a bully –
the boy was ignored. I told Mandy I would always stand behind her. If she got
suspended for standing up for Casey or Rob or another student, we would go
shopping and have a fun few days.

But – it was hard. For most of Mandy’s special events, many times, only one
parent could be there. When possible, I left Casey and Rob with my parents or
Tracie so we could both be there for Mandy. I hated missing things and was so
worried she would start to resent autism. She denies thinking this – it’s just
my mom guilt talking.

I tried to remember all of the ways my parents made my brother and I feel
special and did them with Mandy. There were times I told her she looked “sick”
and I called her off school, sent Casey and Rob and we went shopping. They were
sent to bed earlier and we stayed up watching movies. We played games. Anything
I could think of that would be special memories to her. It wasn’t easy and still
feel the guilt of sitting at the top of the stairs playing horses or Barbies
with her so I could still hear what was going on downstairs. I hated being torn
and not being able to completely focus on her. She says she doesn’t remember it
that way – and I thank God for that.

I know you are exhausted from the 24/7 care for your child with autism. But,
please, find little ways to let your other children know they are just as
special. Put notes in their lunch box. Text them. Play games. Skip school. Put
everyone else to bed early. There are a million little ways to let them know
that you are always thinking about them. Take turns with their other parents
doing something special. Or ask a grandparent to stay with your child with
autism. (Yes, I know finding someone you trust to stay with your child with
autism is hard – sometimes, impossible – but it’s so important!)

At our autism support meeting last week, it was suggested that at our next
meeting, we talk about how to help typical siblings understand their sibling –
how to parent both. Mandy spoke up and said she hadn’t felt any less important
or special than Casey or Rob – that she didn’t resent them at all. I’ll admit –
I had tears in my eyes. I don’t know how I did it, but somehow, I got lucky
enough that she grew up feeling important, cherished and loved.

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Posted on July 25, 2021July 25, 2021

AUTISM AND THE ART OF TAKING A TRIP

Autism and the Art of Taking a Trip

Casey has been asking for months to go to a water park beside the zoo and I kept
telling her no. Honestly, the park is big, it’s open and it’s terrifying to
think about taking them there.

The reality is, I would need at least three other adults to go with us. Rob
likes to explore, but once he finds a place that will continually dump water on
his head, he pretty much stays there. But, with autism, you never know, so two
adults with him at all times.

Casey wants to try everything. It doesn’t matter if it scares her to death – if
it is there, she has to try. While I’m so proud of her for going outside her
comfort zone, that also presents challenges. For water slides, someone has to go
with her to the top and someone at the bottom. No exceptions. When Mandy and I
took them to Sesame Place two years ago, I was right behind Casey on slide and
in that ten seconds, she disappeared.

It seemed like hours before we found her – in line to ride again- but really, it
was only a few minutes. My head knew she was right there somewhere, but my heart
was pounding. And, Mandy needed to stay near Rob, so it made looking for Casey
even harder.

But, it’s hard to explain to Casey why that water park is not in her future.
I’ve told her that’s it too big and not safe, but she says “adult!” Yes, Casey,
I know you are an adult, but… How do you explain she is a child in an adult
body? How do you explain that you are scared to death someone will hurt her?
Neither Casey or Rob can comprehend that.

So, as a compromise, we went to a Great Wolf Lodge near Lake Erie. We could kill
two birds with one stone – her water park and his love of the lake. They were
both excited, but if you’ve ever taken a trip with autism, you know the planning
is crazy.

I looked at pictures and reviews of the lodge. I requested an early check in
with a room on the first floor at the end of the hall. I thought of every thing
they might need to be safe, happy and able to sleep.

I let them pack blankets – one for her, four for him. And their pillows. And
iPads. Snacks. Breakfast stuff. Big Bird was the lucky one chosen to go with us.
It’s funny watching them choose clothes. I have to talk her into taking any
extra ones. Rob? He packed for more than a week – every red shirt he owned, plus
a few more.

I thought and over-thought every detail. Went over every possible thing that
might happen and tried to prepare. And thought, without autism, we would have
had a duffel bag, cooler and bag of snacks instead of a trunk full of stuff. I
worried about the staff at the park. Would they be patient? Would they be
helpful? Would they be kind? (For the most part, the answer is yes to all… But
they could use a little training with special needs).

We did have a few bumps, but mostly, it was a great trip that they both enjoyed.
It took a lot of planning, but it was definitely worth it. Traveling with autism
is never easy, but I have learned that many places are ready and willing to
accommodate your needs – you just have to ask! If somewhere isn’t willing, then
go somewhere else. Special needs families don’t need to hide or be ashamed!

Let the world see and hear your family. Every time you do, you encourage other
families to do the same and you open the eyes of people around you. Only good
can come from that! 😊

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Posted on July 18, 2021July 18, 2021

CELEBRATING THE LITTLE, BIG STEPS IN AUTISM

Celebrating the Little, Big Steps in Autism

It’s been a week of so many little, big steps for Casey and Rob. I say “little,
big” because to most people, these steps forward are not a big deal. To an
autism family, little steps sometimes take years to see – they are big, huge,
amazing steps!

One of the funniest steps forward is seeing Casey use emotions Thursday evening
to try and get what she wanted. When I picked them up, she was happy and
giggling. A little while later, she was crying and telling me she didn’t want to
go to their day hab the next day.

Nothing I asked could help me understand why she so badly didn’t want to go. I
messaged staff and was told she had been happy and engaged all day – nothing had
happened. Casey kept sniffling with teary eyes saying “No Hopewell tomorrow.”

I finally stopped asking her questions and hoped she would calm down enough to
tell me. And she did.

She looked at my calendar, saw I had an appointment Friday and she wanted to go
to Hobby Lobby, not Hopewell. 😳 I was so happy she was finally able to tell me
– and use the right emotion (sad)! I told her I wasn’t going to that store and
she happily went to Hopewell Friday.

Saturday was a car show that Casey had been reminding me about for weeks. She
was so excited to go, but she was able to understand she needed to stay with
Grandma and Grandpa before we went. She even stayed happy and calm when that
visit stretched longer than I planned.

As we left their house, Rob started his “on the way home” phrase. He says it 13
times whenever we get in the car to come home. (He only does this with me – for
everyone else, he stays quiet until he gets home and then starts repeating it…
13 times!) We got to the car show before he was finished and he was able to
stop! This is huge! His OCD requires 13 repetitions of his phrase and he
controlled it.

He quietly finished his 13 times as we walked back to the car after the show. 😊

The car show was on Main Street and we were able to walk around looking at cars
without the fear that one or the other would take off. Casey even walked about
half a block by herself to say hi to friends of ours! Mandy, Cory and I were all
watching to see if she would go to them and stop and she did!

The look on Lyn’s face when she saw Casey by herself was priceless! I walked
over to them and gave Casey a big hug and told her how proud I was. She looked
at me like I was nuts, of course. 😊

And today… We went swimming. But even better than that, all three of us played
ball together for a long time in the pool. And when I got out, Casey and Rob
played together! I sat on the edge of the pool and thought about the years when
I couldn’t take them to a public pool without a lot of help. Look at them now!

And when it was time to go, they got out of the pool without a fuss. Again… Not
too many years ago, that wouldn’t have happened. I would have been telling them
20 minutes left. 15 minutes left. 10 minutes… And so on… And probably still
would have had issues.

So…. Brag about everything your child does. Who cares if it’s a skill they
should have mastered years before? Brag about it to everyone! The people who
truly care about your child will be as excited as you… And the ones who aren’t
excited… Maybe they don’t matter as much.

Because, just like everyone else, your child with autism knows when you are
proud and happy and excited. They may not be able to communicate with you, but
they know and hearing you brag to everyone about a new skill they have learned
is just as important to them as it is to a “typical” child. Shout from the
rooftops! And be sure to let me know – I’ll spread the word and we’ll all cheer
for your child! 🙂

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Posted on July 11, 2021July 11, 2021

AUTISM AND ABSTRACT THINKING

Autism and Abstract Thinking

Look at the picture with this post. What is it? A dog? A puppy? An animal?
A pet? Blue? (That’s her name. 😊) Any of those guesses are right.

Have you ever noticed how many abstract thoughts you have every day? How many
generalized ideas that you don’t really think about? Now consider your person
with autism who struggles constantly with very literal thinking. Their thoughts
are often black and white – concrete ideas.

Can you imagine being told that the four legged thing in your home is a dog, a
pet, an animal and a Labrador retriever? For us “typical” people, that’s all
true, but if you think that everything has one label, it’s confusing and makes
no sense.

Casey really struggled with labels when she was in elementary school. She
simply couldn’t understand that the word “animal” meant so many things. Or that
the word “dog” could be our black lab and Grandma’s furry pet. Cows could be
black or white or brown. Trees could be maple or oak or pine. They all looked
so different, but had the same name. She would get angry about the different
labels for the same things.

She was in junior high before she started realizing it was okay for objects or
people to have different names. Imagine her shock to discover her Mommy Jen was
also Uncle Jeff’s sister (Jenny), and Grandma and Grandpa’s daughter! I was a
mommy, a daughter, a sister, an aunt, a cousin, a niece, a granddaughter, a
friend. It was too much for Casey to understand. When she was young, she knew
Mandy was her sister and Rob was her brother, but she wouldn’t call herself a
sister, because that was Mandy!

Imagine you are told you are going to McDonald’s, only to discover you didn’t go
where you thought! There are thousands of McDonald’s, and they are similar, but
so different. How confused would you be? And remember, while you are trying to
understand this, people are constantly trying to get you to label items and tell
them what you want!

But – how can you label something with so many names? You are struggling to get
words to come out, already, and now you don’t know what word to use. You are
thirsty. Do you say cup? Drink? Water? Juice? Thirsty? The color of your
favorite cup? Because every one of those words will get you a drink. As an
adult, if you were in this position, how frustrated would you be?

Rob seemed to grasp generalizing a little more than Casey did. He knew dogs and
cats were both animals, but he didn’t care. He understood people had different
names. (Casey still struggles when people have the same name. She gives them
an extra name, such as “Our Tracie” and “Other Tracy.” She doesn’t mean
anything by it – it’s just her way of separating two people. 😊)

When you are trying to help your child learn words, consistently use one word
for each item. Say “cup” every time, not mug or glass. Say “shoes” not sneakers
or boots or flip flops. All of that can come after your child understands when
you say shoe, he needs to put something on his foot.

We used PEC cards with Casey for a while and she learned quickly, but then I
realized she thought of a drawing when she said cup and not an actual cup. We
switched to using actual pictures of items versus the print out designs and this
helped so much.

I made books for Casey and Rob with pictures of people, places and common
items. They could carry their books (I had one for home and school) and could
point to what they needed.

Abstract and general pictures worked a little, but the actual photos were
better. They didn’t have to wonder if the pencil drawing of a book meant the
same as an actual book. Don’t assume your person with autism can generalize
like you can. Remember how literal they think. There are no shades of grey.

Once your child can communicate her needs, you can decide to work on more
generalization, if you see the need. Honestly, I don’t push that for Casey or
Rob. It’s not a life skill they need. If they get confused, I explain and we go
on.

Always remember when you are talking to a person with autism to use short, clear
words and give them plenty of time to process what you said before you repeat
it. Keep it simple and short and say exactly what you mean. Life will be so much
easier for you and your child when you learn to do this!

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Posted on June 26, 2021June 27, 2021

AUTISM AND THE IMPORTANCE OF SELF-CARE

Autism and the Importance of Self-Care

If you’ve ever been on a plane, one of the first things you hear is if the
oxygen masks come down, put yours on first – you can’t help anyone if you don’t
take care of you. It seems like a reasonable plan. But, would I do that? Put
mine on before I helped Casey or Rob? Hmmm…. the only reason I’ll say mine goes
on first is that Casey and Rob will never be on a plane. 🙂

Honestly, though, I do have a hard time with the whole self-care thing. I know
the last several months, especially, I let go of things that I truly love doing
because I never seemed to have time. I was busy with both jobs, with Casey and
Rob, with helping Mandy and Cory move… I can make all the excuses I want, but
the reality is, I have a terrible time taking time for me.

When school finished for the year, I decided that if I was truly going to live
until I’m 120 (my goal so Casey and Rob will be close to 100 and will hopefully
never have to live without me 🙂 ), I needed to think of me, too. I still
struggle with it, but I’ve been reading every day and exercising more. I’ve
started doing Yoga again and am trying to eat healthier. I am working on my
crafts again and remembering how much I love creating things. Do I feel guilty
about this? Yeah, sometimes.

Sometimes, as I pick up my book, I think I should be sending pitches for more
writing jobs. I should be calling this person or that one or knocking a chore
off of my to-do list (by the way, do chore lists ever disappear? Every time I
think I’m catching up, more stuff gets added! 🙂 ) I beat the guilt back by
reminding myself a stressed out person won’t live to be 120.

But – it’s not easy to put yourself first. My kids will always be more important
to me and it seems there is always something I can be doing with or for them. I
could be swinging with Rob or having an endless conversation with Casey. I could
be building with Legos or making color by numbers for Casey. We could be
practicing with their communication apps. We could be hiking together. And the
list goes on.

I’ve burned out a few times in my life. Luckily for me, I just end up an
exhausted, crying mess. I don’t have health issues – just emotional ones, so
far. And please God, may that continue. The thing is, I know when I’m getting
close to burning out. I know that when I crash, I won’t be any good for Casey
and Rob. I know I need to take a break and do something for me. I know all of
that – and yet, I still don’t always consider my own needs as being that
important.

It’s crazy, isn’t it? To know I’m coming close to a meltdown and just keep
running towards it. Do any of you ever do that?

I remember one time several years ago that I completely burned out on a Sunday
morning. I couldn’t figure out what we needed to do to get ready for church.
Really, I just couldn’t think. Thankfully, Casey and Rob are so routine based
that they got themselves ready and we made it to church. I saw my parents and
started crying. Big, ugly sobbing …. and I couldn’t stop. Casey and Rob went to
their class and I sat in an office with my parents and cried. I was so tired, I
could have gone to sleep right there. The sad thing? My parents wanted to take
Casey and Rob home with them so I could have a break and I couldn’t agree with
it. I just kept saying I was fine and I just wanted to go home.

Even in the middle of a breakdown, I couldn’t just say I needed help. I’m
nothing if not stubborn. I finally agreed to go back to their house and take a
nap.

Don’t be like that version of me. You won’t get any extra points in life for not
accepting help. For not asking for help before you burn out. You know what you
will get? Gray hair, ulcers, and an unhappy life. Autism is tough, even on the
best of days. Ask for help before you burnout.

Self-care really is that important. If you crash, your child will crash, too.
It’s that simple. You won’t get a gold sticker by doing it yourself. I know how
full your days are. There is always something else that needs done or someone
that needs help. It won’t end. Only your attitude can improve. You have got to
take care of you. Consider your self-care as important as your child’s care.

The picture with this post? Yes, those are my feet as I lounged by the pool –
all by myself. For the first time since I became “Mommy Jen” I went to a pool by
myself. If I can learn self care, you can, too!

Find ways to relax and remember what makes you happy. Don’t make excuses about
not having the time. If you don’t make the time to take care of you, you will
crash and burn – and you will take your child with you.

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Posted on June 20, 2021June 20, 2021

AUTISM, OCD AND IRRITATION

Autism, OCD and Irritation

Casey has been on edge this week. While I have seen her beautiful smile and
twinkling eyes often, I’ve also seen the irritable side of her. The one that OCD
(obsessive compulsive disorder) grabs and won’t let go at times. She has been
“off” and I’m not sure what to blame.

We did have a big storm that was supposed to hit us, but luckily, it went
around. Rob was especially loud that afternoon, as the barometer dropped. The
weather does affect her, but not always as bad as it does him. She was just
grouchy. I completely understand that everyone has off days and they bounce
back, but she’s been different for almost a week.

She’s focused on her calendar and keeps repeating things she wants to do, even
when I tell her I will not put ride the rides at the fair on her October
calendar, yet. Nor will I write when we will go to the water park. Or when
Mandy’s baby is coming. And when I put her off and explain that I can’t write
things I don’t know, she snorts and flips her hair. (Oh my God – the attitude!)
She wants things written down – NOW!

She wants Cory’s car show at the fairgrounds and is irritated that it is on Main
Street this year. She wants Anna’s birthday, Lacey’s birthday, July 4th, a
cookout at Hopewell, and sparklers – and she wants it all written on her
calendar. Now. I have written everything I can, but I can’t write that we will
have cake for Anna and Lacey because I don’t know when or if that will happen.
So, she snorts and flips her hair again. (Yes, her hair is short, but the way
she flips her head, I know what she is doing!)

She is irritated that there isn’t any laundry in the dryer. Or that I can’t tell
her what we are having for supper – tomorrow night!

But – there are happy smiles, too, so I know this isn’t something that needs
addressed with her doctor, yet. If she was nothing but irritable, I’d be
concerned, but she’s just picking and choosing what to get upset about and
driving me nuts in the process. Because, once she gets fixated on something, as
you know, she can repeat it until I want to scream. A conservative guess for
discussions about the car show yesterday (it isn’t until mid July!) would be
near 100.

I surprised them Thursday with a trip to the zoo. They both love the zoo. He
wants to see turtles – she just likes being there. This time, she slept all the
way over (about 90 minutes) and then basically stayed completely serious/on edge
until we had lunch. She started asking a few minutes after we arrived – way too
early for lunch. She barely looked at anything until we finally had lunch, then
she perked up and looked around. She got fixated on lunch and nothing would make
her happy until we ate.

Her OCD is really grabbing her lately and it won’t let go. I haven’t changed any
meds, so that’s not it. She is happy between compulsions (and really, the
compulsions aren’t affecting anything but our conversations, so far) so I don’t
feel she needs to see her doctor. What I would like to know is why.

Is it the weather? The phase of the moon? Is she not sleeping enough? Is
something going on that I don’t know about? Is she going to have anxiety issues
like Rob does? Or – and most of the time, I truly believe this – is she just
trying to keep me on my toes? 🙂 Wouldn’t want Mom to get too comfy in how well
things are going for them, would we?

But really, that’s the autism is. You have routines for years that can’t be
changed at all, then all of a sudden, no one cares about those routines. You
can’t eat certain foods, then you can. You can’t wear certain clothes, then you
can. You can sleep all night, then you can’t. You can eat chips, then you can’t.
You can’t brush your teeth, then you can.

Autism is like dancing. Sometimes, it’s slow and steady like a waltz – the same
steps repeated over and over in a beautiful pattern. And then… Irish jig time.
No one tells you the steps, only that you have to keep up and not stop. And you
are out of breath and wondering what the heck is going on.

Yep – been there, done that. I’m just thankful that, so far, Casey is only
repeating things constantly. She isn’t getting mad or having a meltdown, just
getting irritable and pushy about what she wants. I can handle this. I can
answer her without really thinking if I need to. And when I get close to losing
my mind…..

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