"Open" Gym

End of the quarter. No school. Busy toddler. Cold snowy day.

Open gym at a local gymnastics studio seemed like a decent idea. One of Max's classmates, A, went last week, and his mom said that they had a really nice experience. It was a huge warehouse with all of the gymnastics equipment and tumbling mats, wedges, circles etc. set up for the kids to go nuts. Today, since there was no school for a lot of kids, was insane- to put it nicely. But I was expecting that.
When Max's friend was there last week, the instructors held a circle time with parachute activity, etc. For an autistic child, circle times are extremely stressful and generally out of the question in a situation like this. So last week, when the situation presented itself, Max's friend continued playing on the mats and doing his own thing. When approached by an instructor, his mom explained that circle time was not a realistic expectation for him and they were very understanding. A couple of other kids with autism were also there and not interested in group time. No one had an issue with these children not participating. A's mom told me what a great place it was for our kids and we made plans to meet there this morning.

When Max and I arrived, it was crawling with other preschoolers. It was crazy. And loud. It took us ten minutes just to get checked in and hand over our $8. Despite the number of people and new place, Max did ok. He immediately found a part of the gym that wasn't very populated and happily did own thing. Eventually, he made it over to the busier activities. Several activities required Max to wait his turn, which is very hard for him. This place definitely required me to keep him within arms reach so he didn't crawl right over another child. A's mom and I do not have the luxury of standing on the side lines, sipping our coffee and chit-chatting while our children independently play. We are there. Micromanaging. On offense. On defense. We just didn't know how much we would have to on defense today.

So all was well until the cow bell rang signaling... DUN-DUN-DUN.... circle time. A's mom and I looked at each other- a little relieved. While all of the other children willing participated in circle time, our kids could play peacefully on the gym equipment- which was by the way, off to the side, around a little corner... The relief of sudden openness and backing off of their mom's was instantly seen on their little faces. Until SHE arrived. I will refer to her as D-bag.
D-bag told us that the boys needed to go over to circle time with everyone else. A's mom explained that our boys had autism and that neither had the ability to sit and participate in such an activity. The lady rudely responded that it wasn't a choice. They had to go. I had walked Max over to the circle time area and he wouldn't even sit down, staying in that area was not an option. A's mom said that they had been there last week and the boys were allowed to play quietly off to the side. D-bag said they should not have allowed it. Because all of the instructors were doing circle time, there was no one to supervise the boys. This was a funny point because since we'd arrived at the madhouse- not a single instructor had even glanced our way. We didn't need them. Max and A weren't exactly doing back flips off the high bars. They were playing on mats and wedges.
A's mom and I were very adamant that due to their autism, our boys would not and COULD NOT participate in circle time. It would be a screaming disaster and that situations like this provoke indescribable amounts of anxiety for our boys. And since we were never told that circle time (which is stupid during OPEN gym anyways) was a mandatory part of open gym- they shouldn't have to partake. (And PS, for Max, if we went to open gym regularly and he wasn't forced to do circle time, he would probably eventually do it for at least a short time anyways.)

Then she said it.

D-bag told us that, "Well then YOUR boys can go to the lobby."

That's right. Because our kids have a disability that prevent them from participating in the circle time activity, they were not allowed in the same room anymore. They were to be banished to the lobby.

Cue the flames shooting out of A's mom's ears and my mouth dropping to the floor. I was in shock that she had just said that. A's mom said, "You know that's discrimination right?" D-bag didn't care. We told her that she was excluding our children because of a diagnosed medical/behavioral issue- just to make sure she understood. She said pretty much said those were our options and that's it. We said we wanted our money back (Max and I had only been there a half hour), we wanted to talk to whoever was in charge and that we would be filing complaints. She gave us a snarl and said, "Go ahead." And walked away.

We were stunned. Max was mad we had to leave and protested, but eventually obliged when I told him we would go to see Grams and Gramps. A, however, had a giant meltdown. He hadn't been there long and was unfairly being told to leave now. We asked to speak to someone besides D-bag, and a very nice and apologetic woman came over to give us our money back and smooth things over. She said that we should have never been told that and that if we ever come back, they would make sure things went better. However, she mentioned that it might be best for our kids to come to a special needs class on Weds. morning. First, our kids have school then. Second, I don't want him to have to go to a "special needs" class, I want him to participate in open gym with all of the other kids. Just because he does have this disability doesn't mean he should have to go sit in a different area of the gym and it doesn't mean that he has to take a special class just to use their equipment, when all of the other kids can use it during open gym.

At this point, I had to leave because I could sense Max approaching the dreaded meltdown point. But A's mom stayed and I guess D-bag begrudgingly came over and delivered a very forced and rude "sorry." A's mom said it resembled a sibling being forced by mom to apologize to their brother or sister. Totally insincere.

A's mom has already filed her complaint and I will be doing the same this weekend. Making a big deal out of something like this is not something I want to be involved in- it's the last thing I want to deal with actually. And I don't think the whole studio has this discriminating attitude that D-bag did. But D-bag needs to be dealt with. So that our kids don't have to deal with something like this ever again and that some other unsuspecting family doesn't walk into the same situation.
I don't want special treatment for my child, I want fair treatment. If a child came in that was born with one arm and the instructors were to decide that circle time meant taking turns swinging on the rings, would that child be told to wait in the lobby because he or she couldn't do the rings? I doubt it. Public places adapt themselves to be accessible to people with certain disabilities by adding wheelchair ramps, automatic doors, wide doorways, etc. ATMs have braille. Certain situations utilize subtitles. Hell, some places even use more than one language to accommodate those that don't speak English.
Generally speaking, you can't tell someone has autism by looking at them. I don't know how many time we've been told that "I can't even tell he has autism." This drives me CRAZY!! Autism doesn't have "look." A lot of times you can't notice anything different until Max is put into a certain situation and certain stressors are presented. My kid isn't a brat. I wish he wouldn't sit in circle time because he was a brat. That would be awesome. But he's not a brat. He has sensory and neurological issues that he cannot control. So don't punish him for that.

I didn't think we would have to deal with a situation like this until Max was older. And I was shocked to be put in this position at a preschool open gym. I guess "open" gym isn't so open after all.

Therapies

When a child is diagnosed as being on the spectrum, hopefully at a young age, it is recommended that as much therapeutic activity be crammed into their life as possible. Some programs, such as ABA therapy, requires a solid 40 hours per week. This in not a route that we are currently choosing for Max, and he is by no means getting 40 hours of "official" therapy a week. Max attends school through the district autism program four mornings a week. Two mornings a week, we have private OT and speech. The rest of the therapeutic activity pretty much falls on us to take care of at home.
I am a firm believer in applying what is learned in therapy or school, to real life. Yes, Max is only three, but autism is a life-long diagnosis and for us, the whole point of therapy is to help him achieve the highest levels of life skills so that he may be a productive and independent adult. We have been very lucky to work with amazing teachers and therapists during the past year that have the same goals for Max and are more than willing to help us trouble shoot issues we are having at home. I can't even picture how much more stressful our lives would be without the things we have learned from them this past year. Really, they are simple things, but they have made a huge difference in our life. They have helped us to understand the very different way that Max's mind works and how to use that to our advantage.
Until you are in the midst of all this madness, you can never really understand how all encompassing being on the spectrum is for some people. It affects the whole family and almost everything that goes on in daily life. Many people have asked me to share some more specific details about certain things we have done with Max so that they can either learn more about it, or to share with others who are in the same situation. I am more than happy to share what we have learned because I think that awareness leads to understanding and acceptance. When you have a child diagnosed with autism, it's very hard to know what to do next. They don't give a schedule of treatments, everyone has their own, very strong, opinion of what should be done and finding accurate sources of information are nearly impossible. It's important to keep in mind, that every child with autism is different. They may show similar signs and characteristics, but that doesn't mean certain treatments or approaches will work for them.
With that in mind, here are some things that work for us (or we are trying to have work for us!!)-

We recently had a massive fail at potty training. Max shows all the signs of being ready. And with two babies on the way, I thought- let's try it! It took literally hours of prep work to get things ready before we could even start with Max. For months, we had been regularly putting him on the toilet and not expecting anything from him. Just getting him used to the idea. Then we bought big boy underwear. We talked about them and made a big deal about them. I got them all washed then we started putting them on him. At first, it took two of us to get his screaming and kicking little body into a pair of totally adorable Wonder Pets underwear. The first few attempts were ugly- he would scream and cry for them to come off. In these situations, we do a "count to ten" and then take off approach. Eventually, he gets used to it and we don't have to count anymore. Once he was sitting on the toilet ring and wearing the underwear without a fight. It was time- or almost time.
I bought extra sweatpants, a step stool, M&Ms and extra chocolate for me! Then it was time for the visual aids. A lot of people with autism are very visual. Words and language often confuses them and makes it hard to follow patterns. But give them a visual schedule of the events or a visual cue and everything is crystal clear. I've talked about social stories before and really they are so, so helpful for Max. The idea is that you break down an event into simple manageable steps with easy to understand pictures. I make ours on PowerPoint, print them out, laminate them (because he will look at them a lot and destroy them otherwise!) and put them on a ring. Then we start going over the story with Max- again and again. Pretty soon, he has it memorized and looks it often by himself. The important thing, is to follow through with the steps the way you did in the story- because that's how it's all playing out in his mind. Swaying from that established routine will upset him greatly and you basically have to start over... Here's what our social stories look like:

The other thing that we did was put laminated pictures of toilets up throughout the house. The idea is that because Max has a hard time telling us what he needs, he can just grab the picture and hand it to us to indicate he needs to use the toilet. This is a very common method of communication in the autism community and it's called PEC, or Picture Exchange Communication. You can read more about it here. These pictures can often be found for free online and easily used within your home.

 We also found a free graphic of the PEC toileting schedule. These are posted in the bathroom, right next to the toilet. They are a simple walk-through of the toileting routine.

Once all of this was in place- I gave it a go. And it was a massive failure! In the first day, we had 13 accidents. We tried a couple of times the next morning, but it was very obvious to me that Max was not understanding what was expected of him when we was on the toilet and that he was unable to communicate when he needed to use the bathroom, despite the visual aids. His frustration levels were sky high and big belly was making it very hard to be up and down every couple minutes, and to clean up messes. So it was decided that a couple of other skills need to be mastered before we tried again. (And I would not be the only one home with him during this trial!!)

So our plan is to find a movie that models the toileting routine. Movie Modeling helps walk kids through the successful sequence of events of a certain event or task. They use this a lot at Max's school and he seems to really respond to it. Of course, Dave and I could make a movie to depict this, but that seems to be crossing all sorts of weird lines!! No thanks!
And the other thing- the key thing- is to work with Max so that he understands that when you need something- and it requires help from someone else- that you must GO to that person and indicate your need. Our plan for this was to put a new cabinet in the playroom with a lock in it. Some of the things that he likes (not loves- it would be mean to lock those up) are in the cabinet and there are pictures of the contents on the outside door. When he wants something, the picture is supposed to cue him to come ask us for what he would like. We also try to make sure he walks over to whoever is going to help him and makes his request face-to-face instead of just hollering for it.

Before getting pregnant with Max, I knew potty training was no easy task. But I had no idea is was going to be this complicated!

We also recently started The Listening Program upon the recommendation of our OT. Max listens to "pretty music" (aka classical music with nature sounds) through special headphones that don't allow outside noise in for 15 min., twice daily. When he does it at home, we usually does his sensory bins (small tubes filled with popcorn kernels, rice and dry beans). The idea with music is to help him learn to focus on the task at hand and to filter out whats going on around him. We also have hope that it will help with the non-stop scripting he does. I am keeping track of behavior changes, etc. and at the end of six weeks, we'll see if it's helped at all.

There are a couple of other things I'd like to get in place before the babies so I have to get my rear in gear.

Happy 2nd Birthday Elle Belle!

Dear Peanut,
Two years ago was hands down one of the best days of my life. At 12:42pm, you literally came into this world screaming! You weren't even all the out when you started hollering! That was you though. You were a very happy little girl, but when something didn't go your way, you let us know. And as soon as you got your way, you were happy again! A little stinker from the second you were born! But you did give me a super easy delivery- so for that, you definitely win bonus points!!
Right away, you were so sweet and cuddly. You just wanted to be held and even though you were a bigger baby at 8lb. 7oz, you seemed so tiny... except for your thighs! Sorry Baby Girl, but it's true! You had a little bird nose and started sticking out your lip and trying to make us feel bad- just like your big brother! Oh and the little noises you made! I can still hear them! We were so excited to show you off to everyone, but I remember being so relieved when everyone left so that we could have your all to ourselves... What I wouldn't give to have that back again...

We had a little party for you today. But its hard to have a birthday party with no birthday girl. We got you a pink and purple cake. Some of us spent a couple making fleece blankets for the hospital- we got 16 done today!- and then had cake and ice cream. Afterward, we went to your spot and sent you some balloons. I know we didn't stay long, but it was so cold in that wind!
I miss you so much, and I'm so mad so that you aren't here to celebrate with us... I'm angry that we missed out on a whole other year with you. I can't even picture you as a two year old. My mind just can't fathom it. This evening I was looking at your picture and I can't even believe that you were really here and ours. It's almost like you were too good to be true... Sometimes I definitely wonder if you were just the best dream I ever had...

Max writing in Sissy's birthday card.

Ellie's pink and purple cake- some of the frosting looks a little red, but it's magenta!

Ellie's cousin, Evan, and Max. Obviously Max is pretty set on the cake!

An awful picture of us...

I know you had a better party today in Heaven. A better party than I could ever dream of throwing you. I'm sure you giggled, played and laughed. I know you made a mess of the best cake anyone could ever imagine. And I know it's selfish, but I wanted you to do all of those things here, with us. Just like you should be...
Love you so much little girl- I always will... And I am so thankful that two years ago, you came into our lives- even if it was for not nearly long enough...

Blanket Drive

In honor of Ellie's 2nd Birthday on January 15th, we are collecting fleece blankets for the Children's Hospital in Minneapolis. All blankets will be brought to the hospital in mid-February. Ellie's Light is using some of it's funds to purchase blanket making materials and Ellie's family and friends will be gathering on her birthday for cake and to make blankets.

We would love it if others would help by contributing blankets they've made themselves! If you like to make a blanket for an ill-child in the hospital, here's what you need to know...

• All blankets must be made of new fleece.
• If you've never made one before- they are super easy!! No sewing! Some places have kits with pre-cut fleece that you just go in and buy! Here is an easy how-to guide to follow!
• Blankets must come from a smoke-free and pet hair-free envirornment (these children often have weakened immune systems or are unusually sensitive to certain smells, chemicals or pet dander).
• We are looking for boys or girls blankets for kids 0- 18 years. 
• We also take new soft, fuzzy baby blankets too! 
• Blankets may be given to an Ellie's Light Board Member, one of Ellie's family members or friends. They may also be shipped to our PO Box at

Ellie's Light

PO Box 241674

St. Paul, MN 55124

We know from personal experience that the hospital gets very cold, especially in the evenings and night. A warm blanket does great things for a person's sleep. Besides that, these fleece blankets give each bed a nice comforting feeling as opposed to the white, sterile hospital sheets and thin blankets. One mom told me that she liked to have a colorful blanket under her son so that it distracted her eye from all the tubes and cords coming out of her baby. It's a simple thing, but for a child in the hospital, or even a cold parent curled up on a small hard chair, it can make a big difference.

Last year, we were able to make and collect over 45 blankets for the Children's Hospital in honor of Ellie's 1st Birthday. I would give anything to have Ellie here to celebrate her birthday, but since we can't, it's nice to know that her life will make a little difference in somebody else's life.

This girl sure loved her blankie!

The Birthday Girl is Dead.

I am so sick of planning "parties" for a dead baby. I know I don't have to do something for Ellie's birthday, angelversary, or whatever... I want to do something- I want to do it for her. But I hate, hate, HATE that she will never be at one of her birthday parties. Planning a birthday party for a little girl who will never blow out candles, open presents or smear cake across her face is almost unexplainable... For me, its exhausting. Its almost an out of body of experience. It makes me feel like I'm a crazy person...

Ellie's second birthday is on Sunday. I can't believe it. I should have a two year old running around here leaving a path of destruction in her wake. Instead, I have a headstone...

Last year, we did a big party for Ellie. This year, I just don't have it in me. We are doing a blanket making party again and collecting fleece blankets (more on that tomorrow) for the hospital. Just a few friends and family are joining us to make blankets and have a piece of cake... I've avoided planning for as long as possible, but today I needed to order her cake and get some plates and utensils. So I went to Target.

I wish that I'd had a tshirt made beforehand that said in bold letters, "THE BIRTHDAY GIRL IS DEAD."

I don't understand how some people are not able to pick up on certain conversational cues! I went to the bakery to order her cake. I flipped through the book of obnoxious Dora, SpongeBob, etc cakes looking for a cake appropriate for a two year old that has spent the last 15 months in Heaven. There weren't any... So I took a deep breath and prepared myself... 

I saw a round Barbie cake that had bright pink and purple decorations on top but an edible Barbie wrap around the sides. I did NOT want the Barbie part. The lady just kept asking questions that were not on the little order sheet in her hands. She wanted to know why I didn't want the Barbie part... Did the birthday girl not like Barbie? Would she prefer something else? 

I was like I'm trying to make your life easier here- just don't put the Barbie part on it and quit talking! I don't know if the Birthday Girl likes Barbie. I'll never get to know. Because THE BIRTHDAY GIRL IS DEAD! So take my damn order and shut it.

Even though her little hands will never touch it, I like to get Ellie a present on certain occasions. But what do you get in a situation like this?? I found something but in the end, it’s really for me. Because, the birthday girl is dead.

I brought all my crap up to the check out- there were only two open- and since there was a little girl about two years old in one lane, I went to the other one.  I immediately noticed the cashier was a talker… I hate that! He started in on the questions right away…

“Having a birthday party?”

“Yeah…”

“How old is the birthday girl?”

“Two.”

“Oh exciting!”

Silence.

“The Birthday Girl doesn’t get to pick out her birthday stuff?”

NO. NO SHE DOESN’T. BECAUSE THE BIRTHDAY GIRL IS DEAD!!! Is what I should have just said. It was on the tip of my tongue. It wanted to come out. But the little girl and mom now standing right behind me were listening to the whole conversation and the little girl was admiring the pink and purple party decorations. For some reason, I just didn’t want that little girl to hear those words come out of my mouth… But it took everything to not say it to him. I know he would have felt awful- he was just trying to be nice. But seriously- take a hint. I obviously do NOT want to talk about this… be quiet, scan my things and let me leave!

Planning a little girl's second birthday party is only fun if the birthday girl is going to be there...

Yes, we are having a party. Yes, we will acknowledge a day that I will forever be grateful for. A day that brought a screaming, chunky little girl into our lives and changed them forever. But I just can’t bring myself to think of it as a celebration. How could it be when the birthday girl is dead?

The Babies

The last 15 weeks have been completely nerve wracking. Even though I left each doctor's appointment with good news and evidence of healthy, growing babies, I was not convinced. At all. I keep bigger and feeling worse. These little people are wiggling around and kicking a lot these days, but I just couldn't shake the strong sense of hesitancy and fear... During my pregnancies with Max and Ellie, I was well-aware that things could go wrong. But even after losing Ellie's twin, I still never believed that anything bad would happen. After all, bad, horrible, catastrophic things only happen to other people. But now, I know better. I know that bad things happen all the time, and just because you've had your heart shattered once, doesn't mean it won't happen again, and again...
Until this weekend, we had almost nothing in way of preparing for the babies. We hadn't really discussed names, thought about the nursery or sorted through any baby items. We (meaning me) had bought nothing for the babies at all. Not even a little onesie or blanket. In my mind, I kept thinking, yes I would want something to remember them by, but I didn't want to have a whole room full of stuff to deal with if/ when they didn't make it. I had spent more time thinking about how we would handle it- logistically- if they didn't make it. Its sick, but I spent more time thinking about a headstone for two small babies than I have a nursery... I guess I didn't realize how broken I was...

On Friday morning, we dropped Max off at school and headed to the High Risk Clinic for our Level 2 ultrasound. Like every other appointment, I was so nervous that I was sick to my stomach. Nothing calms a horrible case of "I'm pretty sure there is going to be something wrong with my babies" nerves, like filling out forms that require to list what's wrong with your current children- autism and dead. Then we had to go over it blow-by-blow with the nurse who didn't really seem to know what was going on... By the time I had to lay down for the actual ultrasound, I was so freaked out. Could they drag this out any longer?!
Long story short- we have two healthy babies!

One...

And one...

Its a boy!! And a girl!!!

We met with the perinatalogist after the ultrasound and she said that everything looked great. Our little guy wasn't super cooperative and wouldn't flip over so we could see his whole face. For that reason, we will get one more Level 2 ultrasound at the high risk clinic before being transferred back to my regular check-up.
On Friday, I was 19 wks, 1 day and the babies were both measuring at 19 wks, 5 days which is good. One weighed 10 oz and the other 11 oz.
A huge weight has definitely been lifted off my chest since the ultrasound. I have proof that both babies have heads and no tails (my friend Jodi and my mom know that these were actually over paranoid thoughts that I had). There were two healthy babies with all the correct pieces and parts. Two healthy placentas, two healthy cords and plenty of amniotic fluid... We were told that there is no way to assess splenic function while in-utero, so we will have to wait until the babies are born to make sure their spleens are functional...
So we got good news. But I am very well aware that things can go wrong at any moment. That is a hard lesson I learned after Ellie died and it hangs over my head all day, every day. But I told myself, that if we got good news at the ultrasound, then I'd jump into BabyLand. I owe it to these two little babes to assume they will be born screaming and healthy. For that reason, I gave the A-OK for others to start buying things for the babies. We even bought a couple of outfits and I picked out their baby books. I guess it's start to getting ready for babies!

Our Little Guy: He is facing towards the left and looking away. You can't see his face but his hand is up by his cheek and his pointer finger is pointed at his ear.

Our Little Girl: She is looking to the left and also hiding her face. Her right arm is raised up with her hand resting on her head. The fingers from her left hand are poking out from under her chin.

"Dear Shopper Staring at My Child..."

A friend and fellow mother of an autistic child in Max's class, shared this on facebook the other day. Each time I read it, I cry. I don't really know why, but I think it seems like people don't understand this isn't something we caused. We didn't do anything wrong that opened the door for autism. Max isn't a brat that gets to do whatever he wants (although he has developed quite the three year old attitude lately...). We let him "get away" with certain things because he simply doesn't understand why they would be any other way. His mind doesn't work the same as ours, and he views the world much differently than we do. Its almost impossible to try and explain this to people who don't know. I deal with this every single day, and am still just finally starting to understand what the world looks like for him. And my level of understanding, is no where near where it should be to really understand why he reacts the way he does. This lady does an excellent job of expressing and explaining some of these thoughts...

"Dear Shopper Staring at My Child Having a Meltdown in the Grocery Store"
From Flappiness is...

Dear Shopper, Yes, I know.  I’m well aware that my child is screaming.  Not just a regular scream, but an ear-piercing, sanity-shattering screech.  Even if I wasn’t seeing and hearing it, I would know by the expression on your face.

Clearly, you have raised your children better than me.

That is what you were wanting to say, right?   There certainly can’t be any other purpose to you stopping in your tracks to stare or elbow your companion  or better yet — give knowing looks to other shoppers passing by.

I have no doubt that you have wonderful, well-behaved children.  Grown, tax-paying, law-abiding citizens who would never have dreamed of screaming like this in public when they were children.  Judging by your expression and utter exasperation, you’ve never hesitated to let them know who was boss.

And I know that you did your best with your children, that you loved them, and want all children to have a solid upbringing in which to start their lives.  You are, in all probability, a good person.  You probably don’t mean any harm.

This is what complicates what I want to say to you.  Because, despite my anger towards you, I happen to have been raised well too.  I don’t want to be ugly, even though right now I feel like it.
Because I know some of that anger is misdirected.  It is misdirected because I, too, have stood in judgment of someone like me.  I, along with almost everyone, have stood in public and watched a scene like this one play out and thought to myself, “Clearly she has no control over her children.  When I have children, mine will never behave like that.”   I, like most people, wasn’t quite as obvious about it as you.  I didn’t stare or make comments that could be heard.  But I was every bit as decided.

So, some of my anger is really directed toward Human Nature, who refuses to be put in its place.
The nice thing about human nature, however, is that it can be overridden.  And all it takes is but a single experience, a single human interaction, to the contrary of your own strongly held convictions.  Then presto whammo — you are a new and hopefully improved person.

Let me introduce you to my child.  Like you, I marveled at the miracle of life upon becoming his mother.  Like you, I rocked, burped, and inhaled his sweet baby scent and thanked God over and over for the gift of him.   Like you, I had certain dreams for my child.  There your path and my path diverged somewhat.

My precious child is autistic.  Yes, I’ve seen Rain Man, and, no, my son is not likely going to be a great card counter.  The truth about autism is that it encompasses a wide spectrum of abilities.  And, like you and me, every autistic child who has it is different from the next.  Yet they do often share some similar traits – sensory overload and meltdowns are one of them.

Every person on the planet has what I think of as an internal alarm system.  Most of us have ours in good working order.  But some people with autism have what I like to call a hair-trigger alarm system.  Theirs can go off with what seems to average folks like little to no provocation.  There IS always provocation.  Non-autistic people simply aren’t as sensitive to seeing and hearing the triggers, and that’s when the alarm goes off.  And when it does, it’s loud.   Everyone in the vicinity wants nothing more than to have it turned off, including the people who love them.  When you see me “placating” my child and “giving in” to his tantrum, I’m really just desperately looking around for the alarm key or trying to remember the right code to turn off that blaring alarm.  It isn’t his fault.  And, no matter how upsetting it is for you, let me assure you it is that much more upsetting for him.

I’m sorry that you haven’t had quite as pleasant of a shopping trip as you had anticipated.  It hasn’t been so pleasant for me either.  Problem is — I have to feed my family, deposit my paycheck, pick up prescriptions, etc. just like you do.  And, unfortunately, no one arrived at my house today to watch my child so that his autistic behavior wouldn’t upset anyone in public.  I have to leave the house and so does my child.  Because I have to teach him about the world.  I have to let him practice controlling his alarm system.   So that he, too, can possibly be a productive citizen making come true all those dreams I had for him when he was so small.

With so many advances in early detection and therapy, many of us will be able to see most of those dreams come true for our unique children.  And for some of us, our dreams will have to change for our children.  We may need to re-define happiness and success.  For life is like that.  We constantly have to reevaluate our expectations of ourselves, others –and, sometimes, even the grocery store.

I’m hoping that your single human interaction with me has given you an opportunity to be a better person.  For, with 1 in 91 children being diagnosed with autism now, you are going to have a lot more opportunities to make a positive impact in the life of someone like me.  All it would take would be a smile, a pat on the back, or a “Bless your heart, honey, hang in there” to refill a stressed out parent’s reserve of patience and calm.  You could be the bright spot in our day.  And, then, if you want, you are welcome to ask all the questions you want.  Your curiosity doesn’t offend me in the least.  Most of us aren’t the least bit upset to talk about our kids – any more than you are.  If anything, it is an opportunity to educate and dispel myths.

And, maybe, just maybe, you will be standing there when the alarm gets turned off.  Maybe you will get to see what every mother wants the world to see – the wonderful personality of her child, in our case hidden behind a mask of fear, anger and frustration.

Who knows?  Maybe I’ll get to see the one hidden behind yours."