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.) 

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".

THE HORROR!!!!!!

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.

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
kinds.”

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.
Zip.  

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
broke.  

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.  

2. 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!

Potty Training and Autism

Fries, we need to talk some shit.  Full warning, if you are a parent of a really little one this is going to be some shit you might not want to hear.  We need to talk about the first big milestone that your kid with autism is going to miss.  

Nope, not the talking one. Not the pointing at stuff one. Not the eye contact one.  We're talking about a pretty huge one that seems to send parents of three years olds off the mother loving deep end. 

POTTY TRAINING (cue the dramatic music) 

On average I get at least five emails a week that start with "My kid is three and still not potty trained and seems to have no interest and they have school and what do I do?????" 

And then I dash their hopes and dreams when I reply "They aren't ready.". Which, believe me you, I get no joy out of doing.  I totally get it.  Maybe they had other kids before this one and they were just like "YAY!, THREE! No more diapers! Hot Damn!" or maybe they are still consulting all those neurotypical sources and they are all saying "This is the age." but again, autism. It's just not going to happen that easily.  

Much of the disbelief I see with these emails is their insistence "But you don't understand. They are going to school.". I sent my Kiddo to school at three too. Guess what? He wasn't potty trained. Not in the slightest and it was totally okay.  

Here's why it will be for you Fries  too.  Your child will most likely be attending a special education program.  This ain't their first rodeo. Your child will not be the only one sitting there not fully potty trained.  There's a reason they ask for an extra set of clothes.  They know accidents can and will happen.  So while you are packing those extra pants and socks (Don't forget the socks.  People often forget the socks.) you can add a pack or two of wipes and diapers/pull ups.  They expect it.  

And don't you dare feel bad about it.  At. ALL.  Listen, my mom was a preschool teacher for typical kids.  She dealt with her fair share of accidents too.  It just happens.  No teacher goes into their field for the money and they certainly don't go into thinking it won't be messy. Have you seen children in general?  They're disgusting.  I mean, I love them but the little feckers are gross.  

Here's what you can do.  Your special needs child will start school with an IEP.  Guess what you can get written into it?  Yep, potty training!  In order for potty training to be successful, we all know it needs to be consistent across the board.  It's best that both school and home are doing the same exact agreed upon thing.  So sit down with the teacher and hammer out a plan and agreed upon rewards and such.  Keep each other in the know of how things are going and revamp as needed.  

And I hate to say it but if your kid is anything like mine, expect this to take a long time.  Yeah, I'm not going to lie.  The older they get, the more complicated this topic becomes.  They start growing out of diapers but then you can switch to those training Pull Ups.  When they grow out of those, there are still "Overnights" for older kids that I think go up to 120 pounds give or take.  If you need to, there are "adult" diapers because this is part of life my Fry friends. These things are available and thank god that they are but don't even feel bad that your kid needs them.  This is just the life you have and you make the best of it.  

Despite what you might think, kids don't have very much control over their own lives. They strike back with the three things that they can control.  1)Sleeping. 2)Eating. and 3) Pooping. That's what they have and sweet baby Jesus in footie pajamas, they don't let you forget it.  Now let's add "Autism" to this equation.  Limited diets are going to affect their bathroom habits.  Communication issues are going to make things trickier.  Even sleep becomes a nasty villain in all this.  Trying to get your kid to both sleep through the night AND not wet the bed. What's that first tip you probably read.  "Wake them up and make them go to the bathroom."  Yeah, wake the finally sleeping child that took two or more hours to wind down up?  Are you insane? Do you have a death wish?  Unless my house is on fire, I'm not waking my Kiddo up and even then I would probably ask the fire and rescue crew to work quietly while dousing the flames on my house.  

Finally, potty training isn't just a single goal to achieve. It's, pardon the pun, a crap ton.  First order of business is the peeing but the pooping?  Mother of mercy, it's a process.  Plus we have teaching them to wipe and washing their hands to boot and this all the stuff we are just trying to get them to do at home.  Try taking your kid to the bathroom to their first "away" toilet.  There are a lot of enemies there.  Automatic flushing toilets and hand dryers.  Teaching young boys that if they use a urinal that they have to 1) Aim 2) Not pull their pants down to their ankles in public. Cause let me tell you Fries, a little boy butt, adorable.  A hairy teenage butt, not so much so.  Teaching girls to handle the locking and unlocking the stalls.  It's a lot!

And if you are the mother to a son like me, you get the added worry of "Should I still take him in with me or send him in on his own? But if I do send him in on his own, do I have enough time to go myself and be out in time to meet him?"  I've probably given myself several UTI's on the amount of holding it that I do because not all the factors are safe based on where we might be.  Yeah, those family bathrooms/gender neutral restrooms are a thing we all very much need.  

I can't stress this enough. We get very hung up on their milestones but really, this is our milestone we're fixating on.  We want to drop the diaper bag.  We want to stop washing out (or throwing out. Admit it. You have.) underwear.  You want your kid to have this because yes, it does make parenting a ton easier.  The first thing you have to accept though is it's not probably not going to happen at three and it's not going to be quick.  

So deep breaths!  Push the water and juice at them.  Set the timer.  Feed them some salty snacks (Fries are perfect.)  so they drink more water and keep trying because that is literally all you can do.  They are trying their best and so are you.  

Kiddo, age 4.  He may have missed a critical step here.  So close.  

The Three Month Rule.

Today I was interviewed by a graduate student who was doing research on autism, parenting, and all that jazz.  One of his last questions was "What would you tell a new to autism family or just any family that maybe just needed some inspiration?"

So I told him the secret of my sanity. (No, it's not wine.) It's wait three months.

Three, just like Schoolhouse rock taught us, is the magic number. The months part? Well that's just good dating advice I learned in college. An on campus therapist there was once sympathetically listening to me whinge about a guy that I was SO head over heels for and how I just couldn't imagine myself with anyone else.  She had spent a better part of an hour listening to me list some not so hot qualities about this guy. (What can I say? I was 20 and stupid.)

She looked at me, smiled and said "Wait three months before you do anything serious with this guy. If he's a stand up guy, he'll still be around and if he's not, your life will still have a chance to be different in ways you don't know yet."

Yeah, guess who was GONE after a month?  Guess who was super glad she didn't waste her time or energy chasing after that guy?  Guess who also found herself looking at the calendar one day three months later and realized "Damn, she was right. Things can be so radically different just in three months."

This applies to parenting and all things Autism because in three months everything can be totally and completely different. This can be both good and bad but it's a reminder that most importantly, nothing is ever stuck in that one spot.  You can choose to change it. You can choose to move it along or if you want, just stay stuck in it.  (I don't suggest that last one.  It really blows and just sucks the life out of you.)

For example, Kiddo is loud. Like makes a death metal concert look kind of mellow loud.  With this comes different stim noises and or phrases that he just latches on and repeats.  In some ways, you sort of get use to it. They become a bit of white noise in the background to you but every once and a while, say every THREE MONTHS, one will be like having an ice pick jammed in your ear.  For whatever reason, it will be the perfect combination of awful but as my husband often says to me. "Don't worry Hon. In a few weeks, he'll pick an even more annoying sound to make."  And you know what? He's right!  (Hey, look at that Daddy Fry. I said you were right. You might want to print this blog post out and frame it.)

But my point is, eventually, it always changes. For a condition where people aren't suppose to be digging change, my Kiddo does it a lot.  He just does it at his own pace and I'll just have to use my ear plugs and white knuckle right through it.

This can go the other way too. Even when things are kind of good, guess who is waiting for it to all go south? This gal right here because you know why? It always does. Good gravy, I will give autism one thing. It sure ain't boring. We've now added teenage hormones to this party and let me tell ya, you cannot tell me boys don't get PMS because OMG and WTF!?!?  But I digress, I just have to go with the flow because the temp agency refuses to take my phone calls anymore requesting a substitute mom.

Yes, three months can be a long time to wait something out but think about how quick it can go when the going is good.  So, I'll just keep giving myself and the Kiddo those three months because right now it's all we've got.

The Show Must Go On.

"The Show Must Go On. 
The Show Must Go On. 
Inside my heart is breaking
My makeup may be flaking
But my smile, still stays on." 
Queen

Kiddo had his IEP the other day. I'll get right to the point. I didn't want to go. I didn't want to deal with it. I didn't want to prep for it. I didn't want to hear about goals or benchmarks. It's not that I don't care, it's just that I am so tired.

Couple with this with a yearly review from the state agency, "Perform Care". Which if you are a resident in New Jersey, you will speak to quite a lot under the guise of getting help and services for your kid but only if you are willing to be a giant pain the ass to follow through to get it.  "Perform Care. We barely care or perform." might as well be it's slogan.  I spend an hour on the phone with them to once again answer a slew of questions of what he can't do milestone wise and what damage he can do behavior wise.   I listen to an employee tell me all the stuff they can provide if only he was "more severe" or "less severe".  It seems if your child is middle of the road autistic like mine is, don't hold your breath that you'll get actually help.

Gee Kiddo, it seems you have the wrong kind of autism.  Who knew that would be a thing?

It's not just a physical tired that I am talking about here. I haven't had a full night of sleep since the doctor said "It's a boy!" at the Kiddo's birth. All parents walk around in a bit of fog, especially those of us in #TeamQuirky.  It's not fun but your body gets use to it.

What I am talking about and trying to come to terms with is how emotionally tired I am of all this.  I'll say it. Autism is tough task master and it often makes me it's bitch.  Kiddo is fourteen. He's been in school since the day after he turned three.  So we're talking a decade's worth of IEPs and special meetings with the team.  Plus the year and half before school with Early Intervention and all the service plan review business. At this rate we could wall paper our entire house ten times over with all the paperwork involved.

And I'm just done and the worst part is I know I can't be.  There is no end to this. Not till the day I die and even that I can't really do because, well, autism.  The show must go on. There is no understudy.

Also, to be perfectly honest, I am hitting a wall with Autism in general. Not just my Kiddo's special brand of it.  I know this is an issue of my own making.  Becoming a blogger that writes about one subject was eventually going to bite me in the arse.  I just had no idea how utterly steeped in autism I would become.  Seriously, I cannot escape the stuff.  The majority of my life even outside of my Kiddo is just autism related stuff.  Other families that I know, teachers and therapists that I have become friends with, sites that I follow, podcasts that I listen to, writers that I read, stuff on social media just has a crap ton of autism and puzzle pieces slapped all over it.

I have observed a common theme for most of what I see too.  Struggle. There is just so much hustling to make things work for our rapidly growing kids.  With this IEP in particular, the theme of rapidly growing was forefront.  Job training, independent life skills, improving social skills, and working on coping skills are all being thrown at us.  I mean, we're ready. I think. This is what my professional background is in.  I've been playing the part of "job coach" long before the Kiddo.  I know my lines.

But can I find it in me to sell the scene? Because I am struggling to get to that part of me that makes me believe that we can do this.  That he can do this.  That I can be both his duet partner or his background chorus girl.  Whatever he needs, I will try my best but I am so damn tired and so scared because the older he gets, the more I see how the world just seems to forget our kids grow up.

Because every day lately has felt like I am in a play that never ends. Even as I was getting dressed to go into the school because the dress code is not "pajama casual", it was really hard for me.  I caught myself thinking "Why can't we just be shitty parents and blow this off?" Of course, as soon as I thought it I realized how stupid it was.  Blowing this off won't make it go away. The audience have bought their tickets. The curtain is going up. "Places" will be called and you can bet your arse I will be in mine. (Back to the wall, middle of the table, face to the door to greet any sudden cameo appearances like special guest stars "Speech or Occupational Therapist")

But good gravy, this was the year I struggled to pull off this performance of "Involved and Active Parent".  It kind of freaks me out that I felt this way to but I am hoping that by acknowledging these feelings I can get over the hump of "meh" I have been feeling about autism as of late.

After all, there is still more story to tell.  On with the show!

"I'll top the bill
I'll overkill 
I have to find the will to carry on.
On with the show. 
The Show Must Go On." 

Thanks Kiddo. I've been feeling a bit Autism with a side of "meh" lately.  This helped. 

The Three Types

I think we can all agree that unsolicited advice usually stinks. I think we can also agree that unsolicited advice often comes from people that don't have a flipping clue.

And sometimes it's from people who you thought would have your back from the get go.  Family.

Yep, we're going there.  Let's talk about family and the ones who seem to make the effort it to judge the crap out of your parenting, your kid, and your whole situation.

 It follows a simple formula.  Kid starts diagnosis process, advice and opinions coming flying at you.  There seems to be a few certain sub groups of these less than helpful folks.

1) The Deniers. There's nothing wrong with your kid.  Your kid was an early walker, everyone knows that means a late talker. Cousin Jimmy didn't talk till he was five and he's fine.  Mind you Cousin Jimmy is living in his mom's basement but he's got a job now. Stop fussing! You talk for them too much.  Back off your kid. You hover too much!

2) The Accusers. Well you didn't follow a micro biotic all vegan. no soy, no gluten, no dairy diet while you were pregnant. You bought that house that's too close to the cell phone towers.  You used a microwave to heat up leftovers! You didn't follow a delayed vaccine schedule? You didn't breastfeed or breastfeed long enough.  It's all "You didn't. You. You YOU!!! Look what YOU did!"

3) The Fixers. "Oh, you just informed me of your kid's autism diagnosis?  Allow me to send you every article or meme that I have ever come across on the subject online. Anytime I see you, I will never ask you about any other part of your life other than autism.  I will be puzzled that you didn't follow the advice of the twenty different crack pot articles that I sent you.  I was HELPING! Let me fix it!!!!! The diet! What about the diet?? I sent you that email last week. Why aren't you doing the diet???"

The fact that the majority of these folks that do these behaviors are related to you tends to make this a tad more hurtful.  I can bet you dollars to donuts you have all three of those types in your family.  So even if you go to complain about a "Denier" to another family member, there's a good chance you might be talking to either an "Accuser" or a "Fixer".  You never get a freaking break!

I think this is why a lot of autism families start creating their own families.  I call it the "Autism Mom Mafia".  Seriously, I could walk into a room full of moms with autistic kids and say "Someone is giving my child a hard time." and every single one of them would take off their earrings, pull out bats and brass knuckles and say "Where are they?". No questions asked.  That's freaking loyalty, Fries.  Cause they just get it.  If my son is struggling in school with something, am I am going to call the family member that likes to remind me that I didn't breastfeed my kid and this is all my fault or the mom who knows to get poop stains out of anything.  I have moms I can and have texted at 5 AM because I know they are up already for the day with their kid and they'll immediately reply back "Oh, you got to sleep in today. Lucky!"

I'm not saying go blow off your entire family.  Far from it.  You can't change them but you can change how you react to them. What you choose to share with them.  What you are willing to give them and most importantly, you know know how to lay down some boundaries like a mofo.  Sadly, this is a process and doesn't happen overnight but you can make progress towards a better relationship.  Heck, you can do that.  You work on goals with your kids all the time. Who's to say that Grandpa Denier or Aunt Accuser can't benefit from a nice behavior intervention plan?

So what do you do with a "Denier"? Well, keep living.  Keep doing your thing. Eventually they will either sort of catch up or fall behind. It's sad if they do. That they couldn't be what you needed them to be or what you thought they were but let them kick rocks. You have enough going on. You want to carry them with you to? Didn't think so.  It should be noted that this group is often an older generation and one that is completely in the dark about all things special needs.  I give them a little slack.  Why? Simply because they come from a time where "those kids" went away. Sent to live in group homes and institutions.  They didn't grow up with these folks around. So yeah, it's a bit of a mystery to them.  However, once you start dropping knowledge of them and they still don't come around? Boy, BYE!

An "Accuser"?  Redirection is your best friend! They want to remind you of the time you let your kid eat Red Dye? You remind them of the time their kid ate a french fry off their minivan floor and still lived to tell the tale.  I mean, if these folks are family there is bound to be even better dirt on them that you can remind them about.  "Oh, you want to talk about why I let my kid co sleep?  How about the time in high school you told your mom you were staying the night at my house when you were really co sleeping with your boyfriend in the back of his van after a Metallica concert?"

Now nothing fixes a "Fixer" like some good old planned ignoring. You want to tag me in every meme on Facebook with a puzzle piece on it? "Oh you did? I didn't see it.  Facebook algorithm strikes again!" You want to email me every article you see about Jenny McCarthy and diets? SPAM FOLDER,BABY!!!   You want to tell me at every family gathering about the YouTube clip of the latest cure du jour? I will give you resting bitch face and say "That's nice." and change the subject.

Moral of the story folks? You have autistic problems and they can only give you neurotypical solutions because that's all they know.  Yeah, it can be a pain but it's just what it is.  You can make the choice on how you handle it though. Personally, I am going with humor and a side of fries.

Kiddo will always be my "Ride or Die" best bud.