Thursday, June 27, 2019

Talking myself off the ledge

Kiddo and I found ourselves on our own for dinner the other night. After a week of him being off of school, I was not cooking. He happily agreed and off to the local burrito place we went. Now before you say "HE EATS BURRITOS???", calm down.  He eats plain cheese quesadillas which he calls "pizza" because they are melted cheese on a something crust like cut into triangles.  I mean, he's got a point.  This is fun when we go to order and he yells "PIZZA" and I then have to Kiddo to English translate to the confused server.

While we were tucking in, I noticed a car pull up in front of the joint.  The windows were open and the cutest little fluffy dog was peeking out the window. I pointed it out to Kiddo, who got very excited because it sort of looked like one of our dogs.  He started to get "flappy happy", as I call it and kept saying "That dog looks like Maya! That dog looks like Maya!". 

But while he was scripting up a storm, I was watching a young girl get out of the car. She was probably twelve or thirteen.  She walked into the restaurant and right up to the take out counter. It was then I realized she was picking up some take out while her mom was waiting in the car with the dog.  She gave her name. She paid her bill. She waited for her change. She then carried it out to the car and off they went. 

And I felt tears in my eyes.  This is not something my child could do. I am not sure that he will ever be able to do.  That mom didn't have to worry about her child clamming up with nerves and not talking. That mom didn't have to worry that the girl wouldn't get the right order or that she wouldn't wait for her change.  This child did the same exact thing that my parents had me to do at that age when they were teaching independence/too tired to get out of the car let's send the kid in to get the food. They didn't even have a second thought about it. 

This is when I have to talk myself off the ledge because I can easily wrap this sadness around me like a blanket.  You think our kids need social stories? HA! I had to start reminding myself that only a couple of years ago we wouldn't be able to even sit down in a restaurant to eat. It was grab and go and usually through a drive thru because even getting out of the car was a production. I then also reminded myself that even going to a burrito place was progress.  A french fry free meal?  Groundbreaking! 

So yeah, he still needed help learning how to focus to order and I often find myself having to repeat what he says because the server doesn't hear him or understand him. I have to remember that he is in fact trying. He tries every God damn day to exist in a world that isn't set up to be kind to those with a different neurology than his.  

If he can keep trying, I can. I will get off this damn ledge because it doesn't serve me. It doesn't help him and I. We can keep on chugging along because clearly that's what we're suppose to do. Yes, sometimes I will get sad about this but I need to wipe my tears and my attitude aside. If experience has taught me anything, I just have to feel the feelings and get on with it.  What's my choice? What's my other option?  Wallow in all the stuff he can't do? Trust me, I've done it and I know enough that I will again.  It's a tough cycle but it's part of our lives.

I guess what I am saying is. I'm still surprised how sad I can feel some days about this.  I thought I would be use to it by now but there's always new ways it can creep up on you.

Luckily though, the good stuff can sneak up on you too.  So I'm just holding on for the next milestone he might hit.  Might not be anywhere near as independent as picking up the take out order but he's surprised me before and loves proving me wrong.

As milestones go, Kiddo being so sweet to our scared dog during a thunderstorm might be my favorite. (Or being the vacuuming champion but mostly the empathy thing.) 

Friday, June 21, 2019

Chore time

Gather round Fry Family! We need to have a family meeting. Apparently, some folks on social media feel I'm some sort of meanie because I "make Kiddo do chores like vacuuming and taking in the groceries".

Well, I suppose I ought to start this response with a "Thank you" because if it was not for your fervent devotion to monitoring possible screw ups in my parenting choices I wouldn't have a topic to post. So props to you for being my muse! *SMOOCH!*

But now, I have to go Jersey on you. Buckle up, Buttercup. I have a lot to say on this.

First off, I am his parent and part of my job is to raise him to know basic life skills. In fact, I'm like the perfect person to do these sorts of things because before motherhood and autism had me "level up", I use to work with autistic teens and adults as a job coach and a Pre Vocational Instructor. Like it's in my DNA, Boo. I have to ask. Did you NOT have chores around your house as a child? Because I hate to break it to you but if your parents didn't, they messed up. They just did. Chores are the first steps in job training. FOR EVERYONE. Did you think a different neurology would give Kiddo some sort of free pass from chores?

Second. He lives here. He helps contributes to the mess. He can help clean things. That's just basic common decency. Everyone that lives in my house contributes to it's upkeep. Hell, even my dogs know to follow Kiddo around when he's eating and dropping snacks. They do their bit between vacuum sessions.

Third. I'm going to guess some of you are parents complaining are parents of young spawn. Spoiler alert, our kids grow up. Guess what? They can like do stuff for you and it's like helpful and shit. I'm pretty sure my Dad was dancing a gig the first time my brother mowed the lawn. My mom probably smiled with joy the first time I folded a load of laundry. Your kids might not be able to do what hes' doing now but you can and you should find age appropriate chores for them to do. Believe me you, it's a lot easier to start teaching them these skills when they are three then when they are thirteen.

Fourth. The Kiddo is FIXATED with the vacuum and I have two dogs. Like I'm NOT going to use that fixation to make EVERYONE happy? Focus on their strengths! For any kid. My mom saw I liked to cook. Guess who got put in charge of making dinners some nights? I got to make a dish I liked. She got to catch up on her PEOPLE magazine. Everybody wins! And let it be known there was a time he was TERRIFIED of the vacuum. He straight up went running to me to hide when he heard my husband take it out of the closet. Just the simple act of him doing it on his own now without being asked is a symbol of the hard work and progress he has made.

Happily cleaning the rugs!

He even does my Mom's house because getting to a vacuum a new place to him is FUN! (Plus it's a nice thing to do for his Granny Fry and he knows she's gonna pay him in ALL the good snacks.)

You know, it will be seven years this August since I started writing this blog and it's amazing to me what people will say in response to what I put out there. Both the good and the bad of it. The folks that have a problem with some of my choices so much so that they feel the need to hunt down my email and write me a letter complaining about me having my kid bring in shopping bags from my car though, I have to ask, who the Hell is watching your kids when you are doing all that? Like aren't you busy too? Aren't you tired? I see lots of stuff online I don't agree with or don't like. You know what I do? I scroll on! Did telling me you think it's wrong I make him do things around the house make you feel that much better? If so, I'm sending you my bill. "Window Fries" runs aren't cheap.

Saturday, June 15, 2019

My speech.

*taps mic*  Is thing still on?

Okay, okay. I get it. I'm a blogger who hasn't blogged in a really long time and frankly, that's not a good look.  I can't even say I really had writer's block. I just had "I don't want to talk about it" block.  What can I say? I'm a complicated person but that's part of my charm.

Anyway, what I have been doing is some public speaking gigs and that's been pretty cool. Scary and nerve wracking AF but very cool. I've met a lot of nice people who are up to their elbows in autism just like me. Being an autism family sometimes makes me feel like I am forever walking into a cafeteria and not knowing where to sit.  Going to events like this?  Well, I have my pick of a slew of tables.  It's really nice. 

My last gig was the other night for this kick ass school here in New Jersey called Spectrum 360.  (You can check them out here.)  At the end of the night a gentlemen who's name I have forgotten already (Forgive me. It's summer break for Kiddo. My brain is already mush.) asked me to put my speech up on my blog because he really liked it and he wanted more people to see it. 

So since I need to remember I'm suppose to be a blogger and I have the content already, this one is for you guy I met at the end of the night!  By the way, it's kind of long. So go get a cup of coffee now and settle in. :-)

Good evening teachers, paraprofessionals, therapists,
and all the rest of the Autism Entourage. It’s wonderful to
be here today. My name is Eileen Shaklee but you can call me “Mama Fry”.   and I am the writer of the blog called
“Autism with a side of fries”.

A little about me. Before Motherhood and Autism had me
“level up”, I was on the other side of the IEP table as a job
coach and Pre Vocational instructor at the Children’s
Center of Monmouth County. (Which I bet some of you
might have worked there before you came here. If so,
HEY!)  When my son was one, I decided that I
had had enough autism. I was burnt out at my job.

I needed a break from all things special needs.
Cut to the scene about eleven months later when an early
interventionist came to my house and casually threw it out
there “So he probably has autism but there are lots of

It was in that moment I felt like Michael Corleone in the
The Godfather movies  “Just when I thought I was out, Autism pulled me back in.”

Since I started my journey as a parent to an autistic child
there are so many times I want to reach out to those
former student’s families. I have so much I want to say to
them. Mostly, I just didn’t know. Anything. Nothing. Zilch.

Now I’m not saying “You pros know nothing.” and please
don’t sit there thinking that I or all parents don’t like you.
Quite the opposite. I am forever grateful there are so
many willing to go into this field. It’s not like you’re going
into this for the money.  I even give really good gifts
at the holidays. Not just another coffee mug either!  
Seriously,I took one of my son’s former teachers to go see
Cheap Trick with me in concert.  

I’d just like to share with you a few things I have learned
since switching sides because what I have learned time
and time again is that BOTH sides of the IEP table doesn’t
always know the full story.

I had no idea what it would be like to read all the notes,
data, and paperwork with your baby’s a name on it. I get it
now, both the good and the bad of it. If there is one thing I
could stress to professionals now is that Autism Parents
have a serious case of Communication Notebook/Phone
Calls from School PTSD.

Don’t believe me? The ring tone on my phone from the
school is the old Irish drinking song “Whiskey in the Jar”
cause that’s usually what I feel like drinking after some of
those calls.

I know you’re not calling just to shoot the breeze on what
happened on the Real Housewives last night. Whatever is
coming with that call is going to be heavy.  However, I also
know you may have sighed before picking up that phone
before dialing.I usually sigh when picking up.

Here’s another tip from me to you. Please start with “He/She is perfectly fine.”

The weight of the words on these reports and calls are often seared into our memories.  We take them personally, even when t’s not what you mean to do. What can I say? Our kids
aren’t the only ones that are kind of complicated.

(And Bless my kiddo’s school nurse’s heart whenever she calls and asks “How are you?” and I always reply “I don’t
know. You tell me!” because that’s gonna depend on her
answer. At least she’s always sweet enough to ask!)

I appreciate honest feedback about my Kiddo but if he’s
having an “off” day please make sure to add what you
intend to do about it. What’s the plan of attack based on
what you observed.  Because I am simply not there. I’ll be
glad to come in and help you troubleshoot but remember
sometimes I’m all out of ideas like you.  I’ll honor that you
are trying your best if you do the same for us.   This is also
my promise to you and parents listen to me here. If my
Kiddo has been up since 3AM, I’ll fill you in.  If my Kiddo
refuses, to change out of his Pajamas, I’ll send in a note
and a change of clothes explaining it was a rough morning
and maybe he might change once he gets there.
If Kiddo is scripting “Where is my freaking phone charger Eileen? I don’t know Rich. I’m not your mother.”, I’ll let you know my husband and I aren’t always polite to each other before the coffee has kicked in.

Just ask me what you want to know. I’m an open book.

Money. Now this is something I didn’t get at all before I had a kid. I mean, I worked in school, so I wasn’t exactly rolling around in a pile a cash like Scrooge McDuck.  However, I didn’t realize that down the road I would be forced to make medical and therapeutic choices regarding my child based on whether we could afford it or not.  Every year I get to have the
same conversation with my health insurance plan after my son’s “allowed” 30 visits with a speech therapist. “Do you want to continue services?” “Well let’s see. My son is still Autistic and I’d like him to be able to communicate his needs, so YEAH!”

Like seriously, can you imagine? “Hey Son, we’re on
visit 28 so if you could just learn how to speak that would
be great? Okay? No pressure! Thanks!”

I’ve even had year where we had to pick between OT and
speech.  Even still, I consider us very lucky as we just
have the one kid.  Imagine a family with a couple of kids
and a couple of diagnoses.  I can’t even fathom what they
must have to do to make it work.  So if you see us hesitate
when you recommend more therapy or some sort of item
to buy to help at home, there’s a reason for it.  We are

But to the parents I must say, whatever it is they are
suggesting, I bet you can MacGyver it.  Come on Parents,
we’ve made something out of nothing a lot of times. I bet if
you collaborated with the team at school, you all could come up
with a solution that would not only you could afford but could work!

We are also tired.

I am so sorry to those former families of mine I didn’t
know that by the time you got to me, you were already
worn out from autism.  My twenty something fresh from
college, ready to set the world on fire attitude must have
either annoyed you or gave you hope.  I hope it was the
latter. Even if it didn’t, maybe you went home later and had
a laugh over my inexperience or possibly wondered if I still
got carded when buying a drink at a bar.  I had the best
intentions even they didn’t always work and as a parent I
have to remember that you do as well.   I also operate on a
level of exhausted that can’t be measured by modern
methods of science and math.  Our kids DO. NOT. SLEEP.
Let me put it to you this way, if Kiddo sleeps past 5AM, my
first thought is “Is he still breathing?” followed by “Is he still
in the house?” So yeah, if I didn’t cheer your suggestions
of a sticker chart as groundbreaking, don’t take it
personally.  I may zone out  once I here “token reward
system” being mentioned. This seems to be the “go to” for
any and all issues and once you see it not work for your
kid, you really don’t want to hear about it again.  Token
Reward System becomes like that bad for you boyfriend
you know you shouldn’t date. It sounds good in theory but
you know he’s just going to break your heart again.

My kid is 15. You know how many of these we’ve tried?
The stickers could wrap around the world twice by now.

I know I am also very sorry that I gave looks of pretentious
pity. Those families needed my empathy, not my sympathy.
I can’t stress the importance of just listening and acknowledging what it is we deal with daily. Autism doesn’t just affect the one diagnosed with it. It encompasses the
whole entire household.  An autistic adult self advocate
once said to me “You have autism by proxy.”  I can’t think
of a better way to describe that.

That being said if there are two big things you can do for us is the following.

  1. If you have to call us daily to come get our kids due to behavior then let’s just put the cards out on the table from the start that this placement is not the right one for our kids.  I know from our own personal experiences, once I’m called to come get him, you are no longer the one in charge of that appointment or that class anymore.  My son’s former school did this move and boy did it teach him well how to get out of school whenever he wanted. Behavior is communication and in this case my son was letting us know by loudly yelling and throwing of furniture that the environment was not the right one.  That’s when it’s time to break up with us. We may be mad at you for a while but we’ll realize later on it was for the best. I think it’s extremely important to be upfront and honest if you cannot give the child the supports that they need. Save us the time and heartache BUT Help us find the next placement.  

  1. Likewise, our kids grow up.  My son is currently 15 years old and adulthood is rapidly approaching.  Now what? I see folks mentioning buzzwords like “services” but what are they?  If you are a pediatric therapist, do you know of professionals to refer your clients out to when they become of age 18?  Start collecting this information now because we need it!

We both need to acknowledge the other is human. That
there are days when we both “phone it in.”  There will be
“off” days for a variety of reasons. (Illness, relationship
stress, stayed up too late the night before because of a
Netlfix binge. New episodes of Orange Is The New Black?
Don’t mind if I do!) It’s okay. We are in each other’s lives  
because we love that kid.  I know your students/clients are
“your kids”.  They were mine when I did that job too. Even
when I punched out for the day, I was still thinking about them.

We also need to acknowledge you are speaking another
language and one most parents do not understand. I didn’t
realize how much so till my husband was sitting in on some
of these meetings. I knew what you all were saying but he
had a giant “WTF” in his face.

And maybe it’s because it’s at your job and there are more
of you that are in the know than parents in the not, but it
can really make our parental head’s spin.  Remember how
I said earlier how freaking tired we are and how our kids
don’t sleep.  Rattling off terms like like ABA, FBA, BIP,
FAPE and what seems to be a large serving of Alphabet
soup without explanation only puts up a dividing wall
between two parts of the team.  If you explain these things
to us, I’ll be happy to supply you with a list of known
behaviors and translations of my Kiddo’s verbal stims.  

We both need to remember we are on the same team.
We both need to remember that neither one of us in the
enemy.  Seriously parents. Let’s remember that. Would
you willingly send your kids to the enemy everyday? Of
course not.  So let’s chill that “Eye of the Tiger” getting
ready for a fight at the IEP thing.  It needs to stop.

We all need to remember to take a deep breath, try again,
and when all else fails, order another side of fries to share.

And then they were super sweet and gave me this lovely plant that the students put together in one of their vocational programs and gave everyone a french fry stress ball!