Saturday, February 15, 2020

Chase's Friend Zone

Dining out.  This is not an easy task when autism is a member of your party.  It can be challenging and sometimes downright impossible.  Eating out is WORK for our kids. It just is.  I've written countless lists and tips for those of you have a little ones on how to make it sort of work. I've had successful outings and downright "Holy Hell. Pack this up. Throw money on the table and the get the heck out of here" ones.

What if I told you that there is one restaurant where you never have to worry about how much noise your kid might make?  What if I told you there was a place you could go where not one patron would bat an eye at your kid getting up and wandering around flapping if they needed a sensory break?  What if I told you there was a place where you and your spouse could almost feel like you were on a date again while your kid was playing with the toys WITH adult supervision?

Sounds almost too good to be true, right?  Enter Chase's Friends Zone

Chase's Friends Zone is a sensory friendly dining area that's part of the Riv's Hub restaurant in Toms River, New Jersey. The owner's grandson was diagnosed with autism and let me tell you something, this set up is ACES!  This couldn't have been a greater experience.  It's a private dining room with it's own special entrance.  There is no loud music playing or seven different TV blaring with various shows or sporting games. It's so quiet!  Check this out. 

The hostess told us to sit where ever we wanted. Kiddo picked a spot closest to this play area. 

He hit the trains and completely ignored my husband and I. 

A lovely waitress hooked Mama Fry and Daddy Fry up while another staff member actively engaged with Kiddo and another child that was also there. Within minutes she had both Kiddo and the other child there playing TOGETHER with blocks. We didn't even have to get up and helicopter over him. It was almost like we were on a date! 

Forgot the headphones? No problem! They have a bunch they'll let you borrow! 

Every table had a basket of fidget toys and bubbles. Imagine going to a place where you didn't have to bust out the big mom purse with all the stuff.  They have you covered!  

Kiddo gives two thumbs up for their flat bread pizza and side of fries.  The amount of fries they brought out was almost comical.  He was delighted! The waitress was so engaging with him and with us.  Daddy Fry and I got a couple of burgers which were both really good and I'm not just saying that because I didn't have to cook them. They were great! 

They give each family a piece to sign for their wall.  If you go, look for us on the wall! 

And because this was a new place to us and not our typical Friday routine, autism and anxiety did come with us as well towards the end but let me tell ya, they had our backs there too.  Kiddo was getting a little anxious, and a bit loud but you know what?  No one cared!  The other family was also have a bit of a hard time transitioning to go home but you know what? We didn't care.  Like whatever. It happens.  The staff quickly got us our check.  Kept an upbeat, no big deal attitude which helped keep Kiddo calm and we were on our way with our leftovers.  It was probably the most relaxed I have ever felt while dining out with him and I'm not just saying that because that peach sangria I had was killer.  We talked with each other, with the other family, with the staff. It was just such a nice experience. 

I know this is one of those first of it's kind type places and if you are reading this and thinking "Well, that's great for her but there is nothing like this here.", I hear you. Please know that for many, many years there was nothing like this here either.  This is a start though.  Share this post.  Talk up this story to others. You never know why might read it who can try and bring a similar thing to a place by you.  We will absolutely be back.  If you are in the area, you can book a table on their website or give them a call.  We went at an "off peak" time but there were plenty of tables. 

A big side of fries salute to Chase's Friends Zone at Riv's Hub!

Friday, September 27, 2019

"Mix it up!"

We have been working with a behavioral therapist to address some of the challenges we have with Kiddo's behavior.  Now "Because Autism" is at play here, accepting change has not always been met with rave reviews with the boy.  However, "Because Life", we needed a way to figure out how to make it a bit more tolerable for all involved.  Add to fact that Kiddo is now fifteen and several inches taller than me, there's no "making him" do anything he doesn't want to do.

Kiddo loves "performing" for therapists.  It's very rare where they will actually see the behaviors we talk about with them.  Especially with the guy currently seeing Kiddo. Kiddo freaking LOVES this dude.  We are very lucky to have him. I consider it my good karma for whenever I've let someone go ahead of me when merging on a highway and I give them the "Go ahead" wave.  I mean, that had to pay off eventually.

And for whatever reason, the one thing this guy has taught Kiddo that has caught on so well with him is a simple three word phrase, "Mix it up!".

Honestly, that's its. It's literally been that simple. I don't know if it was time, maturity, this guy's aura, the alignment of the planets, etc. All I know is, all we have to do is say "Mix it up" when we have to announce a change and Kiddo just repeats it and accepts the change.  I KNOW!!  He constantly tells him to "Mix it up".  He won't let him do anything the same way twice during their sessions and I think that has helped driven the point home.  It's just that all the sudden, Kiddo is getting that change happens.

Like we went through a massive power failure.  A Hell of a storm ripped through here a while back and knocked out the power.  For most people, this inconvenience wouldn't be much more than an annoyance that their AC wasn't working on a hot night.  (Which OMG, Mama Fry is way too perimenopausal to be dealing with that bullshit.) For us, I had a legit panic attack when I realized that Kiddo would not be able to have his nightly viewing of "The Polar Express".  I couldn't even hook him up with the portable DVD player because the DVD was stuck in the machine.  No WiFi, so no streaming.  Nothing. It was a Tom Hanks free zone.

But then it wasn't.  Right around the time we would usually be settling down in front the TV, Kiddo decided to "Mix it up". He started scripting the entire movie line for line from the start to the very end.  Including dancing around during the "Hot Chocolate" song and falling to the ground in a dramatic fashion recreating a scene when the characters in the movie fell down.  To quote my husband, "Oh this is so going in your blog."


I have watched this damn movie with the Kiddo every night since we were stupid enough to introduce him to it when he was three.  Three, people. He's fifteen. So let's think about that for a moment.  That he just saw his whole night time wind down routine get tossed aside and he "Mixed it up" and found his own way to cope. In fact, I think was safe to say he coped better than I did.  (I'm 45 and hormonal. Air Conditioning is my god now, people.)

Now while I'm all like a dog whose food bowl got moved with my routine, Kiddo was all "No big deal! Mix it up!".  He still didn't care that the power was out or that it was hot.  He was beyond delighted when I told him that we would be going to stay at Granny Fry's. (who had power and my sweet boyfriend, Air Conditioning.) He did not care at all when I said staying at hers meant that I would have to drive him to and from school instead riding with his beloved bus.  He kept saying "Mix it up!" and just thought it was a big adventure even though his parents are thinking this a bit of a pain in the arse.

Basically, it was the adults in his life that needed the social story more than he did.

I'm not saying this will work for every and any kid. Like all stuff with autism, when it works, it works. Don't question that shit. Seriously, don't do anything to draw attention. Act cool. They can smell fear.

But sometimes, it's really important to bring in a pro. I have no problem letting him think he got one over on us because it took an outside person to teach him something.  Dude, who do you think hired the guy? ;-)

Some things we don't "mix up". His need for Fruit Loops and mine for coffee. 

Monday, September 9, 2019

The Waiting

The waiting is the hardest part
Every day you see one more card
You take it on faith, you take it to the heart
The waiting is the hardest part

"The Waiting" Tom Petty and the Heartbreakers

The start of a new school year with the Kiddo. New classroom. New teacher, Some new paras and some new classmates. After three years with the previous teacher, a teacher who had to pick up and rebuild the Kiddo when we started there, I'm a little more nervous about this change that the Kiddo.  

The toughest part of this all will be the waiting to see if this change works and there is no way to rush it. At all.  As someone who has never liked waiting, it's once again a reminder that if you have a personal issue you need to work on, destiny will make sure you will get plenty of opportunities to learn those lessons through your kid.   You're looking at a gal who when her parents took her to Disney World as a 5 year old, looked at the long line to get in and immediately left her family to go stand with the family that was at the front. I can't exactly pull this move off with him. I have to wait around and see what autism and this change is going to bring.

I can ask him after school "How was your day?" and even on ones where I know exactly how it went because there was an email sent home or worse, a phone call, he will always say "Good" because he has learned this is the standard social norm answer.  I was once again reminded of this when on Saturday afternoon Kiddo announced how a certain kid in his class got in trouble. What exactly they did and how the classroom aide reacted to it.  I had to wait a full 24 hours before I really heard how his day went because it took him that long to formulate how to say that.  To process what went on and how it made him feel. I know a lot of parents don't get the full run down of their typical kid's day either but I'm willing to bet that if one of their classmates threw a desk, they might mention it to you a lot sooner than my Kiddo did. I have to worry and wonder "Did this scare him?" or "Did this inspire him for later on down the road?"

This class placement is also a reminder of the waiting that didn't work out.  So many years the focus was on his academics and waiting for the moments he would catch up with his typical age peers.  Its become more and more apparent that he won't and that's fine. I've always said I didn't care about handwriting just so long as he could sign a paycheck. I didn't care about math skills past the basics.  If I knew he could look at his money and be able to figure out what he could buy on a menu, that would be okay. I waited for more language and while some of that came, most of it is scripted lines he repeats as self soothing mantras. I keep waiting for more spontaneous conversation. Sometimes it happens. Sometimes not.

I kept waiting to catch up and it didn't happen. He needed to wait for me to catch up and realize that.

So his coursework this year will have a greater focus on life and job skills and believe me you, I have wanted and waited for that too. As a former Pre Voc teacher and job coach I have been asking about "When does job sampling start?" so much I'm pretty sure his IEP team has made it a drinking game.  I'm glad he'll be doing these things. I know he will be happy doing them. Kiddo likes to feel like he's useful. If this Kiddo was just a student to me, I know this would be the right choice. I would tell those parents we shouldn't wait on this.  We need to start job training.

I guess I am still waiting for that moment when I wouldn't be constantly doubting myself. Waiting to stop feeling sad about autism when it's brought so many wonderful people into our lives. Waiting to remember that this is where he is suppose to be without having to remind myself our situation is so much better than it was and I'm willing to wait to see what kind of progress we might make down the road.

The irony is Kiddo HATES waiting.  Multiple IEP goals type hate.  So very many social stories type hate. I'm still waiting for him to learn and accept waiting.  I guess if I ask that of him, I can wait and do the same.

I'm still waiting to get off the Isle of Sodor. 15 years and counting should give me tenure by now. 

Thursday, July 18, 2019

Autism and the Dentist

Autism comes with a lot of doctor visits but if there was one that is the most challenging, I'd have to say it's going to the dentist.  Kiddo is fifteen now, so we have had our fair share of visits.  Much like me, he hates the dentist and I don't blame him. You're on your back, with some bright ass light bulb shining in your eyes while some guy has his hands in your mouth, scraping metal tools against your teeth. Honestly, just typing that skeeves me out. It's gross and it's scary and I can't imagine having to face it with communication and sensory challenges to boot.  

But it has to be done. This is a non negotiable. He is going to need his teeth to chew. It's hard going on these visits but here are some of the tricks I have learned that make it a bit more doable.  

1)Finding the right dentist. You're best bet for finding the right fit for your child is to look for a pediatric dentist.  A dentist that specializes in children is much more likely to have experience with the special needs population. Plus, they usually have a variety of tricks up their sleeves to distract from the scary stuff. Kiddo's dentist has video games in the waiting room and flat screen TV's over each exam chair with access to Netflix.  Ask your child's classmates parents who they go to see. That's one thing I have learned from the Autism Mom Mafia, if there is a person to see, we'll all know about it.  Likewise if there is someone to avoid at all costs.

2) When you call to schedule the appointment, make sure you tell them there and then that autism is about to roll up on that joint.  I'm all for spreading autism awareness where ever we go but for stuff like this, it's better for all involved to give them a head's up.  Kiddo's dental office likes to get us in as either the first or last appointment of the day.  The office is less crowded. No one is running behind.  It's usually quieter. (Well, it is until we show up.) This is also a time to fill them in on sensory challenges they are about to deal with. How verbal your child is.  If this is your first time going there, do yourself a favor and ask if they can email you all the "new patient" information forms so you can fill them out at home. I don't know about you but trying to wrangle my Kiddo in a new place while trying to fill out a half a dozen pages of medical history and insurance information is not my idea of a good time.  

3) That first visit. Let's just say keep the expectations low and any actual dental work that gets done is gravy.  This is more of a "Getting To Know You" than a medical appointment.  Again, this is where a good pediatric dentist is key.  They get it.  They usually will give rides in the chair, let the kids see the instruments, and talk about what gets done with the child in age appropriate terms.  If you have an older sibling, have them have the actual exam and be a model for your child to watch.  If you don't have an older sib, rent one.  Just kidding but you can point out the other kids in the office getting their exams.  Google dental visits! You think YouTube doesn't have videos of that?  If they can have a guy video taping elevators, you know they'll have those.  

4) Comfort sensory items.  I usually bring a couple of fidgets for Kiddo to fiddle with during the exam.  The best item that can help your child is what they already have in their office. X-ray bibs! I'm totally serious. They are just like having a weighted blanket on.  Kiddo loves his weighted blanket but schlepping it to the dentist office is a bit much. This works just as well. 

5) Sedated dentistry. This is a really good option if dental work is just too hard for them to handle due to fear or attention span. Sitting still is not something my son does well or at all and sometimes dental stuff can be complicated. Like when he chipped his front tooth.  There was no way he could sit through all that.  So yes, this is what had to be done.  It does come with same extra prep work. You need to get your child a physical clearance exam a week before the dental visit by their regular doctor. They also aren't allowed to eat after midnight the night before the procedure.  They'll most likely wake up cranky as Hell and nauseous to boot after the dental work is done.  (Expect throw up. Have a bucket handy for the car ride home.) Kiddo was pretty sleepy for the rest of the day but by the next morning, he was back to fighting speed. The nice part about complete sedation is they were not only able to fix the tooth, but he got a cleaning and a full set of X-rays. I know some parents that even get a script for blood work to be done. I actually sort of joked that I was going to have a barber come in to cut his hair while we were at it.  I may have taken full advantage of his hitting the pillow hard that night by cutting all his nails.  (I totally did and I would do it again.) 

Another option for dental work is good old fashioned "laughing gas". It doesn't knock them out but it will relax them and in my son's case, make them sing Cat Steven songs at the top of his lungs like a drunken sailor on shore leave.  The bonus is it doesn't require getting a clearance from their pediatrician and they only have to refrain from eating for four hours before the appointment.  It also wears off very quickly once it's done.  They are back to business in no time.  When Kiddo broke his front teeth the second time, (Yes, the second time. You read that right.) we were able to do it this way.  Not only was the recovery time so much easier as it did not make him sick, it was a HELL of a lot cheaper.  Which was great because when he broke his front teeth the THIRD time, (Yes, a third time. It's why I drink, people. )  we knew exactly what to do and my wallet didn't scream in too much agony.  We now use laughing gas for cleanings as well.  It just makes it easier for all involved.

6) The most important thing to remember is to keep trying and keep going. It's really tempting to let going to the dentist slide when you are raising a child with autism.  There's a ton of other stuff you are trying to take care of and the idea of going, well, I get it.  Sometimes it was just way easier to just blow off going.  It doesn't do your kid any favors though.  If anything this has become something my son and I have bonded over. A mutual dislike of all things dental related.  I acknowledge to him that I know the whole thing sucks BUT like all parents I hold out some bribery over his head to motivate him to power through it.

Okay, so maybe I undo a lot of the cleaning he just got by going for milkshakes after with him but dammit, he's earned it.

See that how well that X-Ray bib keeps him calm?  He only wants to throat punch us a little for making him get X-rays this time around.  

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!