Autistic or Not, Let’s Not Make Fun of Children

A few weeks ago, Vice President Mike Pence gave a speech  at an event honoring military families.   He accidentally bumped a child’s nose while he was making a sweeping hand gesture.  The 10-year old boy told the vice president that he should apologize, Pence did, and they hugged it out.  It was pretty funny, no harm was done,  no big deal.  Certainly not a reason to make fun of a child on national television, right?

Snowflakes & Safe Spaces

Cue the folks over at Fox News to give their take on the subject which involved interviewing radio “personality” Tammy Bruce about it.  She called the child a “snowflake,” and said it ” looked like that kid needed a safe space in that room.”  Then she inexplicably compared him to a fired University of Missouri professor, Melissa Click (who claimed she was fired for being white).

Turns out, the boy, Michael, is on the Autism Spectrum.  He’s only been verbal for about five years, and he has worked really hard on manners, social situations, etc in therapy for years.  The interaction with the VP was actually a HUGE step forward for him.  His mom was super proud of him, which she should be because that’s awesome, and she called Bruce out for her ignorant tirade.  Rightly so.

Don’t Mock Kids with Autism

A few days later, after a whole lot of negative press, Bruce goes back on Fox to apologize, saying “My intention was never to hurt a kid and his mom.  We had absolutely no idea that Michael was on the Autism Spectrum.”  She spoke a bit more, but you get the gist.  Feel free to watch the video.

Is it pretty awful to make fun of a child with Autism?  Of course it is. Mocking a child with a disability or neurodiversity is probably one of the lowest things a person can do.   I can honestly say with confidence that I would not have handled the situation nearly as gracefully as Dr. Herrera-Yee (the child’s mother) did (my inner hillbilly lurks way too close to the surface).

Two things really bother me about Bruce’s “apology,” though.

1.) If hurting a child isn’t the intention, why call him names on national television?

2.) Whether or not he has Autism, making fun of him is still a dick move.   It’s only MORE of a dick move that you’re making fun of a child with Autism.

Just Don’t Make Fun of Kids.  Period

It doesn’t matter if you are on national television or not, the kid has special needs or not, tall, short, loud, quiet, fat, thin, whatever.  Don’t make fun of kids.   Even if it’s your own child, don’t call him or her names.  Nothing constructive has ever come from belittling a child.

We see so much in the news about bullying, and we are always up in arms about children bullying other kids.  Maybe as adults, we should set the standard of behavior a little higher.

 

Finding Time for Writing

Hello again!  I know it’s been forever since I’ve written.  In my last post, I apologized for the time in between the post before that.  This blog, which I use for sanity-maintenance, keeps getting pushed to the back burner while I do things like feed my children, work, and eat cake frosting while hiding in the garage.  Writing for the blog has been impossible, but it’s time for me to get back in the saddle, so to speak.   

So, why the delay since my last post?  There are a few reasons:

1.)  We had a new baby!!

Ben was born in February, and he’s… ahem… “high-needs.”  Basically, he yells all the time for no real reason.  He’s cute, and he just likes to make his presence known, so what can you do?  You know how experts say “You can’t spoil a baby?”  Dude, we totally spoiled this baby.  He has strong feelings of disapproval about a wide range of things including being put down, sleeping past 6 a.m., and me wearing clean shirts.

2.) I work all the time.  

I’ve been working from home since Gus was a baby, and while I love it, I’ve changed my focus.  I was doing a lot of administrative stuff, and now I’m doing more writing, which I love.  Mostly, I write website content and ghost-write blog posts for other people.  I was doing product descriptions for stuff on Ebay over the holidays –  mainly laptops and cell phones, but my piece de resistance was a 500-word product description on nipple clamps.  I love it, but it’s time-consuming.

3.) I’m pretty much constantly pissed off.

I was hit really hard by the election.  My children will be hurt by the administration’s agenda, and not in an abstract way – think more of a “Holy shit, the government wants to slash Medicaid, will my children still receive the therapies they desperately need?”  kind of way.  Or in a “Holy shit, the Secretary of Education doesn’t know what the Individuals with Disabilities Education Act is.  Or Free and Appropriate Public Education and just says ‘Oh, the states can handle it,’  which would be fine except the states are notoriously bad at handling equality for any marginalized group and THAT’S WHY THOSE LAWS WERE PUT INTO EFFECT IN THE FIRST FUCKING PLACE OH MY GOD. ” kind of way.  I spend a LOT of time calling my congressman and senators.

Up until now,  every time I would sit down to write, I would either fall asleep because I’m really exhausted all the time, I’d decide to pick up a paid project, or I’d just start typing a long string of profanity in all caps.   However, I’m working on finding time because I want to write about our journey.   I want to tell you about our struggles, our wins,  our challenges, and how we are making our way in this world.

I Guess It Really Does Take a Village…

I just logged in to make a new post, catch up on our goings-on and maybe vent a bit, and I realized I haven’t posted since the end of April.  How can that be?   I know I’ve been busy with kids, working from home, keeping up with the house, etc, but surely I’ve written something in nearly six months?  Apparently not, which explains my edginess since writing about our world is basically one of the ways I stay sane.

As with so many people, life has gotten in the way.   The last time I had posted, Gus was just getting ready to start full-time ABA therapy, we had just moved into our first home, and we were getting used to the idea that Cece was also most likely on the Spectrum.

I don’t want to go in to every single thing that’s happened in the past six months because this would be a 14,000 word post, so I’ll go into more detail over the next few posts.

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He’s happier than he looks, I swear.

One of the most exciting things is that Gus is rocking at ABA therapy!  He has learned so many motor, speech, and social skills in just a few months.  It is amazing to watch how rapidly he is learning and growing.  I can’t tell you how thankful I am that we found an ABA Center that works so well for him and for our family.  He is using more expressive language and tell us what he wants or needs.  He’s getting dressed more independently, and he is able to go into stores and new places more easily.   Gus now has several books memorized, and he wants us to say them with him or take turns saying the lines of the book.

He also has settled into speech and occupational therapy that he gets weekly at a separate location.  It took a few weeks to get used to the new center and new people, but each week, he’s learning.  Basically, the takeaway I’m trying to share is FIND A GOOD TEAM!  The right people working together can make all the difference, and when they all have goals that work together, it makes things so much easier.  I take Gus’s behavior plan and programs he works on at ABA therapy to his other therapists, so they can integrate  everything.  Then we practice it at home, too.   I can’t say enough how exciting it is that just in five months, we have hit this explosion of learning and adapting.  It’s amazing.

That’s not to say that it’s all sunshine and roses.   It’s not all sunshine and roses parenting a neurotypical (or, “normal”) kid, so you can’t expect parenting a special needs four-year-old to be especially

One of these day's they'll take a picture where Gus isn't vaguely annoyed.  Today was not that day.
One of these day’s they’ll take a picture where Gus isn’t vaguely annoyed. Today was not that day.

easy all the time.  Going new places is still hit-and-miss.  We still watch the Twenty Trucks “Police Vehicle” video 493 times in a row.  We still struggle with food and eating.   We still struggle with sensory issues and transitions.  Some days are just hard, and he can’t tell us why, so there’s just a lot of screaming.   However, the good days are in the majority now, so I’m taking it as a win.

So again, the takeaway is “find a good team.”  It’s nearly impossible to take on the parent/teacher/therapist role alone.  If your child works with therapists or teachers, and you don’t feel he or she has the right support or programs in place, see if you can change it.  We looked at numerous therapy centers and preschools, and walked away from a lot of them.  I have requested different therapists on more than one occasion, who were great, but didn’t click with my children.  Instead, we found others who worked better with the kids, and I had no regrets about doing so.   When we (Josh and I) started to see the rapid progress, we realized there would have been no way we could have gotten him to where he is now on our own.

Starting ABA therapy

When Gus was first diagnosed with Autism, we started looking at ABA therapy for him.   For those unfamiliar, ABA is Applied Behavior Analysis.  It’s IMG_2734an intensive therapy program in which behaviors and skills are taught by breaking down the goal into small steps, using lots of repetition, and rewarding goal behavior.  Intensive programs are usually 25-40 hours a week, but every program, plan, and child is different.  For some more information about ABA Therapy from sites that can explain it WAY better than I can, click here, here, and here!

We worked to get Gus in ABA therapy for almost a year now, and it’s been difficult.  First, it was places that didn’t accept Gus’s insurance.  Then, we found a place that looked great but turned out to be a communication nightmare.  The center never returned calls or emails.  It took four months to get Medicaid approval (most locations it takes 3-6 weeks from what I’ve found out).   Once we got an evaluation, the center never called me back with a start date or returned my calls or emails.  My gut and common sense told me that if they’re so lax about getting him into a program to begin with, how hard will they work to treat him?  So, I wrote them off as a loss.

After a lot more research and phone calls, I found a center that seemed like a good fit. The tour was awesome – there was lots of safety and security measures in place, an outdoor play area, tons of different rooms with library spaces, sensory spaces, school settings, etc.  The therapists were active and very interactive with the kids (when I came in, there was a piggy-back race happening on one side of the lobby and wagon races on the other), and there were a lot of social group activities.

Each child had his or her own cubicle too for “study” and quiet time, and they were assigned an iPad for their individualized lesson programs.   Also, the center  was good about getting in touch with me and returning my emails and phone calls. The only drawback was the waitlist, which, while a bummer, we could deal with that. So FINALLY, after nearly a year, we have a start date of May 16th.

And now I’m starting to panic. While Logical Me knows he will learn, have fun, and thrive, Helicopter Me is internally screaming “NOOOOO!!” He’s going to be at “school” from 8:30-3:30 every day, which feels like such a long day for a not-quite-four year old.

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Go Gus, Go!! How I feel with Gus starting therapy

I’m going to miss my little guy.  Fortunately, I know if it seems too much, I can scale back the hours.  If the center is not the right fit, I can find another center.  Overall, I am really excited to watch his progress, though.  I can’t wait to see how he does!

For my readers who may need some tips on how to choose a good ABA provider, I’ve included some links.  Click here, here, and here for some helpful information.

There’s no such thing as a simple decision

If you’re a parent, life is spent making decisions.  Some of tIMG_2769hem are easy – What’s for breakfast?  Should we go on an outing today? Some are difficult – What school is best for my child? How should I
discipline my child?  Given that some of these decisions will determine your child’s health, well-being, and future, they aren’t to be taken lightly.  It’s mentally exhausting some days, and I’m sure I’m not the first parent to feel this way.

When you factor in parenting a child with special needs (in our case, Autism), the amount of decisions you have to make roughly quadruples, and they are really hard choices.  Even stuff that should be easy, like  breakfast, is hard because the cereal bars that my child insists upon eating 364 days a year will become unpalatable on day 365.  So, I have to find something else to fill his stomach while he chants “cookie” over and over.  Do I give in to cookies or do I fight for healthy?

While we’re on the topic of food decisions, many parents are finding that eliminating certain foods from their children’s diets is helping treat Autism.  While most of the data is anecdotal unless there is a diagnosed allergy or sensitivity to an ingredient, should we try it anyway?  Should we eliminate gluten/sugar/dairy from Gus’s diet even though that’s basically all he eats and drinks?  His doctor recommended we not do any elimination diets, so I’m inclined to agree, but what if she is wrong?  Can we even afford almond milk even if he decided he liked it?

Running errands with neurotypical children can be difficult, I know, but there’s an added pressure when you have a child with Autism.  For example, today, I desperately need to run to Target and buy diapers – Do I risk driving all the way over there, only to have to turn around and come home immediately because Gus has a meltdown walking in the door?   Usually, he does fine in Target, but more and more stores trigger a panic reaction for him so his tolerating Target might change, so every visit is kind of a crapshoot.  However, I also don’t want to not take him places because he *might* have a meltdown as that’s not fair to him at all.  I want him to be able to go to the store and the bank, but I don’t want to torture him which is how I feel if he has a meltdown due to something beyond his control.

Then we get to the major life-changing choices, such as G
us’s education –  Do we re-enroll Gus into developmental preschool in our new district, do we decide to place him in full-time ABA therapy, or do we combine the two?  Honestly, whiIMG_1736 (1)le he loved riding the bus to preschool, and the teachers were ve
ry nice, he really needs more one-on-one attention.  Will the school allow him to have an aide if necessary? Which environment will help him the most?  Should we look into homeschooling in a few years so Gus can continue with therapies if they’re needed?  At what point do we back off the ABA/OT/ST/School so he can actually enjoy being
a kid?  While we want him to be as independent as possible, we also want him to be happy.

I’m not going to lie, I feel like I’m being pulled in a million directions all the time and it’s stressful as hell
.  He’s not even four now, so I know that as he gets older, we will be faced with tougher decisions and possibly fewer options, and I hope we will make the best choices for him.  More than that, as he gets older I hope he can take a more active role in making decisions for himself, whether it’s something simple like breakfast or as difficult as options for school or work.  For now, we research what we can, trust our guts, and pray that we are doing what’s best for our son so he can be as happy and independent as possible.

 

Meet Gus – Autism Awareness Month

April is Autism Awareness Month!  I feel that the biggest way to spread awareness is to introduce the world to our loved ones on the Spectrum.  Therefore, I’m taking the next few blog posts to really introduce my kids to the world.  I know readers know about my kids; that’s basically what this whole blog is, but while I’ve talked about situations we’ve been in, things outsiders say, etc, I’ve never actually talked about all the things that make Gus who he is.

Overall, Gus is really happy, funny,  and finds so much joy in so many things- his smile really is contagious.  A common misconception ofIMG_2736 people with Autism is that they don’t show affection, but that’s not the case with Gus (and a lot of people with Autism, for that matter) – he frequently comes over to me or Josh to give us hugs, arm squeezes, or plop down in our laps.  When Josh comes in from work, Gus always runs to hug him.  He’s a bit wary of strangers, but once he gets to know someone or someone makes him laugh, that person has a friend for life.  (Shout-out to the gentleman who sat behind us in church last week who played with Gus and made him shout with laughter!)

Like nearly all three-year-olds, he is a perpetual motion machine – he spends a lot of time bouncing on his mini-trampoline, playing outside, and sometimes, just running through the house, yelling.  He LOVES all things transportation, and his current Favorite ThingsIMG_2656 on Earth are Auto Trader books so he can look at all the cars, trucks, and vans for sale and point them all out to us, a die-cast space shuttle, and “Pete the Cat’s Wheels on the Bus” book.  That is also Gus’s favorite song, and we sing it together All Daayyy Looooong (yes, that was supposed to be sung to the tune of Wheels on the Bus).   Sensory play is a big hit too, much to my chagrin, and we spend a lot of time smushing cloud dough, sifting through uncooked rice, and driving cars through flour (Why yes, I do sweep my floors 632 times a day, but sometimes the mess is worth the calm.).

Like pretty much all three year olds, we’ve watched the same cartoons over and over and over – Thomas and Friends being a favorite, along with Barney, Penguins of Madagascar, and VeggieTales.  I’ve dreamed I’ve lived on the Island of Sodor more than once, and I know all the words to the songs on “More Barney Songs.”  Gus also has several favorite books – “The Gruffalo,” “Night Before Preschool,” the “How Does a Dinosaur” series, and he loves poems.  Of course, music is a big hit too – music at church, Toddler Radio Disney,

While he is delayed in some areas, he has made so much progress over the past few years.  He has gone from having 3-4 words to having 30-40 words, using some short sentences, sinIMG_2681ging songs, and making requests (such as “more milk,” “go outside,” “go bye bye”) in the past year.  He can climb pretty much anything, and where last year he was scared of the toddler slide at the park, he now goes down the “big kid” slide on our playset like a pro!  He has recently started showing interest in animals, and the cats are his best friends (whether they want that role or not) now.  He gives them hugs, pets them, carries them, which allows us to work on the idea of “gentle” and how to treat animals.   At the zoo, he loves the penguin exhibit and says hi to all the penguins.

Like with all people with Autism (and people in general), while life isn’t a constant struggle, it’s not all sunshine and playtime, either.  We have struggles and challenges.  Sleep issues are becoming more and more frequent, in which Gus will wake up at 2:00 am, and he will be up for the day.  We can’t really let him nap in the afternoon because when he wakes up confused, it sends him into a meltdown that lasts at least an hour.  It’s becoming harder to find plac
es we can go that don’t trigger a meltdown for Gus – right now, we can shop at Target and walk around the mall, but not go into any stores, and bringing Gus to church presents some challenges too.  He doesn’t want to sit through service, but he won’t stay in childcare now, either, so Josh and I take turns taking him out and about to walk around.  Food aversions continue to be a struggle, and I’m focusing now on just not wanting him to be hungry, rather than worrying about the food groups.

As I said, Gus has made tremendous progress with speech, but weIMG_2691 still have a lot of struggles.  He uses the word “bus” to refer to nearly
anything he doesn’t have the actual word for, so that creates frustration when I can’t figure out what he wants.  Sometimes, I just can’t understand him, and sometimes, he doesn’t have a way to tell me what he needs, so there’s a lot of guesswork and trial-and-error.

Meltdowns happen a lot, and we just have to ride it out until Gus is calm.  Sometimes, singing, watching a cartoon, or rocking help.   Sometimes they don’t (again, a lot of trial and error).  Sometimes when he stims (self-stimulating behavior, ie: hand-flapping, tap
ping objects, etc), he hits himself or his sister, and we worry he’s going to hurt himself or her.

So, that’s Gus – the condensed version.  He is more than just a
diagnosis, he is more than Autism, he is a fun, energetic, little boy with interests, loves, and struggles, and he happens to also have Autism.

I encourage all of you who have someone in your life with Autism to tell the world about him or her.  Whether that person is your child,
your sibling, aunt, uncle, cousin, friend – IMG_2686tell the world all about that person.  Autism Awareness is more than a puzzle piece logo, Autism Awareness is more than one day of blue light bulbs.  Being aware of Autism means associating the disorder with people.  So share your stories!  It doesn’t have to be a blog, it can be whatever method you choose.  Spread awareness because as more people associate people they know with Autism, the more acceptance and tolerance there will be.

 

Another day, another evaluation

As I’ve written about before, meltdowns are terrible and evaluations are stressful.  Yesterday, we got to combine them as Gus had an evaluation to receive occupational therapy.  I’m not going to lie, it was rough.

He was fine when we got to the center and were in the waiting room, though it did require a lot of singing “The Wheels on the Bus” (Pete the Cat version, of course) to keep him occupied.  Fortunately, Cece found a bead maze to play with, so she was good.

This book is a life-saver. And it's kind of hilarious.
This book is a life-saver. And it’s kind of hilarious.

As soon as the therapist came out to bring us back, it’s like a switch flipped for Gus, and he just couldn’t handle the transition.  Meltdown ensued with screaming, crying, and hitting himself and me, and it continued down the hallway while I carried both him and Cece, and it continued once we got into the evaluation room.   Again, I can not explain how awful it feels when your child can’t tell you what’s wrong or why he’s scared, and you’re basically just trying to guess how to make it better for him.  It’s even more awful when you know there really isn’t anything you can do to make it better for him.

Fortunately, there was a bin of cars and trucks that Gus could play with in the evaluation room, which helped some, but Gus basically spent the evaluation sitting on my lap, crying and tapping on a Hot Wheels truck.  Needless to say, not much actual observation or skills and abilities took place (And by not much, I mean none), but fortunately, the therapist was incredibly understanding – I’m assuming this kind of thing happens from time to time, and she’s used to it.  We were all able to soldier through the process; she just went down the list of stuff she was supposed to observe and asked me about his skill level and abilities, and she got the information she needed.

By the time we were done (it took about 45 minutes total) Gus had calmed down enough to leave my lap and explore a little bit, and then it was time to leave.  Another transition, and it was like “Meltdown: the Reprise,” and all hell broke loose again.  This time, I just picked up both kids, and yelled “Thanks, just email me anymore information!” while running through the lobby.  And just like that *snap* we were outside and fine.  Gus was smiling by the time he was in his car seat.  He was singing by the time we were home (“Wheels on the Bus” – Pete the Cat version, of course.)

To keep from getting bogged down and depressed over what went wrong in a situation, I try to think about what, if any, was good or a learning experience, etc.  It may sound kind of silly and Pollyanna-esque, but we all have our coping strategies, and I don’t drink.  So, the good:

  1.  Gus will be recommended for 60 minutes of occupational IMG_2172therapy a week.  Yay!
  2.  The center was very nice, and I think it will be a good fit for Gus.  He will also be receiving speech therapy here when they have an opening, so that will be good.
  3.  Cece had a lot of fun for the most part, so I didn’t have two screaming children on my hands.
  4.  I was  reminded of how incredibly resilient Gus is.  He went from being so upset and scared to being his usually happy, loving self in no time.

Meltdowns suck (but not for reasons you think)

Today, I decided to be brave and take both kids to Fresh Thyme to pick up some groceries.  Because Gus hates Kroger so much, I usually save trips to the grocery store  until Josh is home.  However, Gus does great at Target, so I figured Fresh Thyme would be a breeze, and I didn’t want to wait until late in the evening just to pick up chicken and some produce.   Also, lately, he’s been doing great when we’ve gone out and about, so I wasn’t too worried.

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Was the emotional trauma to my son worth $.49/lb carrots? Not so much. The $1.57/lb chicken on the other hand…

Fifteen feet into the store, Gus stands up in the cart and starts screaming.   I have no idea what is triggering this reaction, but I know he’s not going to calm

down until we leave.  I’m faced with a choice – do I turn around and leave, or do I grab what I need as fast as I can?  Usually, leaving is a no-brainer, but as I am about to head back out the doors, it starts pouring rain because OF COURSE IT DOES.  I get what I need and get to the checkout, and in the ten minutes it took to shop and get to the checkout, Gus is red-faced, screaming, and covering his ears.  Some people are staring and laughing, some people are trying to ignore us, and a few well-meaning people offer sympathetic smiles or comments.

To put it mildly, it sucked, but not for reasons you
may think.

See, I’ve seen a lot of people confuse a meltdown with a tantrum.  If you’re a parent, more than likely your kid has thrown a tantrum in public, and yes, tantrums are terrible.  Screaming, flinging themselves down, refusing to cooperate – it’s embarrassing and frustrating.  (We have those here too – usually where cookies are involved.)  However, a tantrum is an action with the goal of getting attention or getting one’s way.  While outwardly, meltdowns and tantrums look similar, meltdowns are involuntary and
brought on by a catalyst that is causing pain or distress.  Someone having a meltdown isn’t trying to get attention or get his or her way, they’re responding to being scared, being overstimulated, or being in pain.

When Gus has a meltdown, I know he’s not in control of his actions.   He’s scared or he’s hurting and he can’t communicate what is wrong so he reacts in the only way he can – screaming, covering his ears, biting his clothes, and occasionally hitting.  As Mom, I’m supposed to be able to help him but sometimes I can’t, and it sucks.  I can’t begin to describe how much it sucks when my child is having a meltdown, and I can’t fix it because I don’t know what’s wrong, or I don’t know how or I just can’t do anything about it at the time.

Fortunately, Gus always amazes me with his resiliency.  We left and

A much happier Gus
A much happier Gus

he was immediately calmer, though I could still tell his was feeling “raw,” but by the time he made it home, he was smiling and pointing to the trucks in our neighborhood.  We’ve made it through hundreds of meltdowns since his diagnosis, and I always know we’ll make it through them, but that doesn’t mean they don’t suck.

 

 

Lots of changes going on

The blog has been sitting quietly for nearly a month, and I wanted to update all of you who read the blog what’s been happening in our lives.  We have just moved into our new home and it took us a bit of time to get situated.  In addition to moving, we got slapped with a one-two punch of a round of head colds followed by a stomach virus.  That was terrible.  Seriously.  I can’t begin to describe how much that sucked.  Just the amount of towels and bedding that had to be washed is mind-boggling.

Fortunately, everyone is back to healthy, and the move went about as smoothly as a move involving kids, pets, hiring a moving cGus and Spikeompany, etc, can go.  Basically, that means that chaos reigned and there were several occasions in which I nearly ran screaming down the street due to stress.  Also, Comcast is the Absolute Worst.  I’ll just leave it at that.  It’s over though.

I was terrified how the kids, especially Gus, would handle the transition.  For him, not only were we moving houses, but we changed school districts, and I chose to not enroll him in developmental preschool as he’s starting ABA therapy in April.  With the change in routine and structure in addition to the new environment, I was very stressed, but as usual, Gus continues to surprise me.  He handled the move really well.  He hasn’t had meltdowns, sleep issues, or any other behavior issues in the past few weeks.  (He handled the move better than me because I can’t say the same for my behavior)  Cece struggled at first, I think because she still wasn’t feeling well from being sick, but now she’s doing great too!  The kids actually love having a fenced-in back yard, a neighborhood we can take walks in, and being able to be as noisy as they want to be without me having to worry about neighbors. House  So we’re still settling in, but it seems like we’re getting our routine back and making our new house a home.

So thanks for being patience and sticking with us!

 

Autism testing and evaluations (and why I don’t sleep before them)

I can never sleep the night before one of my kids has testing or an evaluation scheduled.  Today, we had to go to Purdue for another evaluation for Cece, and I had to wake up at 6:15 this morning to get the kids ready, drop Josh at work, and get on the road.  So, last night being no exception, I was not just awake at 12:30 last night, but sobbing uncontrollably.

For those of you whose kids have never required them, evaluations are rarely fun experiences, and they’ve been frequent in our lives the past two years (eight different evals between both kids).  You get to fill out pages and pages of questionnaires and answer the same questions over and over – seriously, I can fill out a Vineland or an MChat in my sleep.  You get to sit and watch people play with your kid and take notes about how well he or she interacts with a doll during the ADOS-2 test.  You get to hear stuff about how your child is behind other

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Here’s your first questionnaire! Fill this out and only 10 more to go!

kids his or her age.  You get to hear diagnoses like “moderate to severe Autism,” “cognitive delay,” and “severe speech delay.”   No matter how true the findings are, it’s hard to hear.  No one wants to hear anything but awesome stuff about their babies, and evaluations and tests are lacking in awesome generally.

Last night, I was just laying there thinking,  “What am I going to hear today?  Are we going to go from Cece having moderate social delay to severe?  Has her speech improved at all?  I think her eye contact is better, and she was playing with my phone – does that count as pretend play?  Will the recommendation be to schedule a definite Autism diagnosis so we can get her into more intensive therapies? ”  As I’ve mentioned before, and I am sure I

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My anxiety takes form as a cartoon whale. That’s normal, right?

will continue to mention, I worry about my ability to balance all the different therapies as the kids get older, and those worries magnify right before testing.  So, instead of trying to get a reasonable amount of sleep, I was sobbing.

While any tests are difficult, the Purdue evaluations are especially stressful because not only is it a nearly 2-hour drive, but I also have to take Gus with me.  While there is always a grad student to watch him, there’s the worry that he will have an epic meltdown while I’m across the hall with Cece.   Also, by the time the eval is over, and we’re discussing the general results, Cece is tired, hungry, and very unhappy.

We survived and honestly, it went really well overall.  While we’re IMG_2589still in “jumpball” status (my words, not theirs) as far as whether or not Cece has Autism, she continues to stay on track with cognitive abilities, gross, and fine motor skills.  While there are still concerns with speech and social skills, she is showing progress.  What does this mean?  Well, at the moment, it doesn’t mean much.  It does mean that I’ll sleep tonight though, as we don’t go for anymore testing for three months.