What is Normal?

Is your child normal? My child is not. What is normal anyway? Normal is anything within the expected and acceptable range of behaviors. Kids with high functioning autism look normal but don't act or react to normal situations like every other kid. In fact they look so normal that people often have no idea that they are autistic. But the way they perceive the world is vastly different from your perception of the world.

My son is five years old, brown hair, and gorgeous brown eyes. He really wants to be social, he will run with other kids in a field or playground, he speaks well, and plays on the playground mostly like everyone else, but gets lost in how to play pretend with them. He is different, and you wouldn't catch onto it if you didn't know him. You might think, "that was a little strange", if you saw a behavior you weren't familiar with, but you'd pass it off that everyone's a little different. But meanwhile my son is struggling. Struggling with just how to react, how to fit in, what to say next, or maybe just forget it and walk away instead. It's more than what normal children go through, its a constant battle for him to conquer behaviors and exert self control. He often repeats words and phrases he hears on tv, movies and books.

He hears everything and sees everything. He will be playing across the room and I may be having a conversation with my husband. He hears and repeats what we say. We go out often. He notices things that others may not notice. Lately the thing he loves to point out are fire bells and fire alarms. We were walking back to the car after shopping at a Dollar Tree recently. He said, "Look at the fire bells, Mom!" I said, "Where?" He said, "Over there! Behind the little brick wall!" There was a brick pillar and sure enough there was a fire alarm red box located on the exterior wall of the building on the other side of the brick pillar.

He obsesses about the littlest things, he gets confused by too many words, he is easily distracted. He worries at the weirdest times. He had to go to the bathroom when we were away from home. He kept repeating that he didn't want to poop in a toilet that wasn't at home. He will shout out 88 when excited. That is his favorite number. He is like a 2 or 3 year old socially. He invades personal space, he is very cuddly. Doesn't understand difference between real and make believe. If he sees something on tv it must be real. That is what he thinks.

He can't read people's faces, and sometimes puns and jokes go right over his head. He will laugh with others though, hysterically. Sometimes he seems too happy, almost giddy to just be him. He will cooperate at times wholeheartedly, but other times you will have to bribe him just to eat a meal. He is eager to please mommy, but will also get my attention in negative ways on purpose. Like running away from me towards the street when I told him to hold my hand as we walk back home or to the car. He is very proud of himself, because he has already forgotten that I disapprove of this. He craves and demands routine. If his routine is out of whack, everyone around him will be sorry, because he will start acting out until you can reestablish the routine he is familiar with. He gets overwhelmed by sensory information like excessive noise, or commotion and will balk at going into busy restaurants. But at the same time he is the cause of a lot of our family's sensory overload.

I have been doing a lot of reading and have found there are many things that you can do to help a child with this diagnosis function better.

1. Use flashcards with pictures of people displaying different emotions to train your child to recognize these emotions on the faces of people in their life. That way the visual information they see in real life will be more easily translated and they won't feel so lost and can adapt to current situations as they encounter them.

2. Practice self calming techniques. Deep breathing, stretching, counting, a favorite small stuffy to squeeze, weighted blankies; all these things can help reduce stress when going into a situation or environment that makes the child anxious or scared or to help them calm down once they are triggered.

3. Every family has some sense of routine. If you have to go out of routine, explain it to the child beforehand and let them know when things will be back to normal. This way they have a sense of control because they know beforehand and can often "wait it out". If you visit family out of town like we do, even keeping their regular bedtime routine will help satisfy some need for normalcy.

4. Rehearse common conversations with your child so that making friends will be easier. Practice the basic, "Hello, how are you?" "I am fine, thanks." "My name is so and so, what's yours?" "Would you like to play?" Role playing like this with mom and dad will make everyday conversation with peers come easier.

5. Encourage the child with a one-track mind to be open to talking about other subjects. Work with them on several subjects they can talk to other children about to help them not seem so rigid. Teach them how to talk about what they like for a few minutes and then switch to a new subject to allow their friend to talk about what they like.

6. If a child with HFA gets overwhelmed by their environment or someone in their environment be willing to give the kid a breather. Taking the child outside for a ten minute break away from what is triggering them can often be enough for everyone to keep their cool. At restaurants, I will often have us sit at a booth or table in a corner away from the kitchen and other customers. Occasionally I have him wear headphones to muffle sounds in public places such as restaurants, grocery stores. He knows that I keep the headphones in my purse. I let him know they are available and it is up to him to decide if he wants to wear them. Often this is enough to help him regain control.

7. Don't protect them too much. Let them feel some physical pain. Let them get their feelings hurt. But be there to teach a lesson when it happens. These kids have a really hard time processing consequences and information from their environment. You can help them process what happened and learn from it to use for next time.

Each child with autism is a little different. They all have their own special needs and ways of functioning. Being there for your child is the best thing you can do. Accept them for who they are and they will show you just how special and unique they really are. Use every situation as a learning tool, but be careful not to squash their creativity. They often are "out of the box" thinkers and will surprise you with the neatest observations. These little guys see the world so differently than we do, and sometimes that is really cool.

Autism doesn't suck because my kid freaks out in loud places like restaurants and bathrooms because of noises. It doesn't suck because I didn't get the shopping done. It doesn't suck because my five-year-old has the social skills of a child half his age. It's not about what the autism means to me.

Autism sucks because my Little Dude often experiences the world as an unbelievably frightening, overwhelming, and stressful place.

Explanation and Rationalization

I’ve been writing this blog post for months in my mind. I have an ever-constant inner dialog playing, it’s a mix of explanation and rationalization… trying to wrap my brain around it and trying to figure out how to tell other people. But whether we can dispute it or not, we’ve decided to come clean with a little secret we’ve been keeping. In the fall 2012 his PCM gave him a provisional diagnosis of PDD. On January 17, 2013,we were thrown our biggest parenting curve ball to date… Aiden has officially been diagnosed with autism -- high functioning type.

Thank God!

I say this because I don’t want you to pity us or him. Ever since his diagnosis, emotions have run the gamut from anger, disappointment, sadness, grief, disbelief, relief, gratitude and now verging on acceptance. We are very lucky. Our child doesn’t have cancer. He isn’t physically disabled. He is and will always be our boy, and now we can get him the help he needs to make his life a little easier. Aiden’s autism is what they call “high functioning.” If full-blown autism is like swimming in a pool, then Aiden is just wading around the shallow end! You could look at Aiden, and even interact with him and never think he “acted autistic” (something people have said to me!) But on the days, even moments, that Aiden is struggling. You can tell and it’s like a tsunami!

As I would imagine is the same for anyone who receives a diagnosis, you feel like little birdies are chirping around you as you slowly float away from your body and watch yourself below nodding along with whatever the doctor is saying. At least that’s how it happened for me. I thought getting Aiden tested was just a formality.

I had checked Autism Speaks; I “knew” the signs of autism. (Hell, I have a freakin' bachelor’s degree in Special Education (with honors -- whoopteedoo!). I taught special ed for a few years. Some of my kids had autism. Occasionally, Aiden reminded me of one of those boys, but then I would tell myself no, not MY little boy. I KNOW what autism looks like. I saw Rainman. No matchstick counting here, thank you very much.) “Autistic kids don’t hug you. Autistic kids don’t look you in the eye. Autistic kids spend hours watching spinning tops.” Well, Aiden is a love bug, very affectionate, eye contact is fleeting (been bringing up that concern to doctors for over two years, and was dismissed too many times to count), he doesn’t watch things spin, but he will spin his body when excited or over-stimulated. Aiden, we now believe, has autism. He does throw a tantrum if you knock his Legos down. He has hit when he is feeling out of control.

August 2012 I wrote a letter to my son’s teacher about concerns I have about Aiden at home. That got the ball rolling. She wrote a letter explaining behaviors she has seen in the classroom. With BOTH of us showing that there are concerns, a referral to have a full-evaluation was finally done. I have always considered myself a hands on mom. Now I am even more so. We’ve been to occupational therapy, physical therapy, speech therapy etc. At the end of the day, all I was looking for was another kid who looked and acted like Aiden. A child who could make this all right in my mind.

What I found is that autism looks different on every kid. It’s a wolf in sheep’s clothing and some days it’s a sheep in wolf’s (itchy) clothing! And some days it’s a dolphin… why, because Aiden says he’s going to be a dolphin, and we don’t want to argue!

No two autistic kids have the same symptoms… well, I guess except the tantrums. That seems to be pretty universal! I told Dean that instead of donning an “Autism Speaks” puzzle bumper sticker, I want one that says “Don’t stare and give me parenting advice when you see my tantruming child!”

We were hesitant to tell people because a myriad of reasons, one of which being I have always been a worrier. Oh, it is just Margaret worrying again. It is nothing, get her a glass of wine or something to settle her nerves… While Aiden’s symptoms and reactions to them may improve, he will always struggle in some way with this. And this is far too big to go through alone!

Let me back up a little. Contrary to what so many people say “I always knew something wasn’t right” or “The day after his 3rd birthday everything changed,” I did not see this coming! Aiden has always been… shall we say a little fire? He was born six weeks preterm and stayed in the NICU for three weeks. With my background in special ed, I knew that there is a possibility of learning disabilities later in life with the correlation to being a preemie. I stayed home with him and it was structure, structure, structure. He had a routine at the hospital for feedings, we stayed on that and eventually he didn’t have to eat as often. Each day I did the routine with him. We listened to the classical instrumental music. I held him a lot and wore a sling with him cradled in it. He didn’t sleep through the night until he was a year old. He sat up unsupported at 8 mos. He took his first steps on his first birthday. He had a lot of spit up and was colicky after I finished breastfeeding when he was six months old. Once he walked, all he wanted to do was run.

As he got older, one thing he did particularly well was play by himself, which I took as a Godsend because I considered that a good thing to have an autonomous child! I don’t remember at what point he got out of control. I suppose it was around 2, just like every other kid! I felt like he had some issues with noise, but lots of kids do! He would scream at mealtime when in his booster seat. He had outgrown his high chair. He seemed to love the high chair, but could not stand the booster seat. I mentioned my concerns to our pediatrician at his 3rd birthday and he said all my concerns were “normal” and to try some different forms of time out and a sticker chart.

Great. A sticker chart. Has this guy seen my kid? He laughs in the face of sticker charts. Stickers…. Some kids love them. I tried so hard with potty training with those damn stickers. That is another entry altogether. Potty training. Shudder.

I made an appointment with a developmental pediatrician. I felt like she would either confirm the provisional diagnosis of PDD that his PCM had given or tell me that my son is just quirky.

Another very telling moment, in retrospect, was during the summer of 2012. He is obsessed with time machines. He “built” a time machine car in his room. He took various toys for the pieces of his car. I moved the pieces when I vacuumed his room. He had a huge fit and it was like it was the end of the world for his time machine car to not be how he left it. And at that point he had pushed all of my buttons! At my wit’s end, I went to Dean and said “I SWEAR THIS KID HAS ASPERGER’S!” Dean, just looked at me like a deer in the headlights. That moment scared me. Little did I know what was to come!

A big part of what bugs Aiden so much stems from something called Sensory Processing Disorder (most autistic kids have it, but not all kids with SPD have Autism). It’s a neurological condition that scrambles Aiden’s sensory input. If too many noises are going on at one time, for Aiden it’s like standing in front of the main speakers at a Pearl Jam concert. He can’t filter any of it out, his brain goes haywire and he has a meltdown. In addition to the noise, he also has a problem with his sense of “proprioception,” which is his ability to “know where he is in space.” Kids who have problems with this fall down… a lot. He is so accident prone that his nickname is “Boo-boo”. After he was diagnosed, we started noticing that when he walks down the hallway he always drags his hand along the wall or stays to one side. That’s because the hallway is too wide open a space for him and it freaks him out. Kids with proprioception dysfunction also have trouble grasping things or knowing how hard or soft to hold or push something. They could hold a Dixie cup and one day crush it and another day drop it (which we’ve seen him do!) His physical therapist says that just walking makes Aiden feel like things are coming at him. Could you imagine? It’s like being in a fun house all the time, only it’s not so fun.

So, like I said, we’ve spent the entire fall and into the winter taking him to evaluations trying to figure all this out. A big moment for me was summer 2012. I signed him up for VBS at church. The theme was aviation wonders. He loves planes and loves church. I figured it would be awesome for him. He had meltdown after meltdown while in the area when everyone is together. Too much sensory overload. Later we went on a road trip to Virginia to see his half-sister graduate from high school. He could not handle the noise when the friends and families cheered for their graduate. Took him to the zoo, he rode on the carousel; he freaked out while on it and had his hands over his ears the entire time. I rode with him in a sleigh type bench. He didn’t want to ride on a horse on the carousel. He was visibly nervous the entire time we were there. At one point, I was coming out of the bathroom and I spotted his grandmother walking with him across the way. Aiden was walking practically sideways like a crab. He had is head cocked to one side and looked like he was in pain. I can only imagine how stressful that day was for him. After those days, I realized we needed to start to see the world through Aiden’s eyes instead of forcing him to see it through ours.

He truly can’t help it. His brain is literally in overload and he craves order to try and ease the confusion. He plays with Legos and cars because they appeal to his sense of order. That’s also why when he’s making a “line-up” with his cars or building “the time machine car” or “the car wash” and someone messes it up, it’s a major tantrum. Sometimes Aiden expects things to happen a certain way, like always getting ice cream after a trip to the park or always pushing the handicap button at the mall. He counts on those things to happen because he needs the predictability. When it doesn’t happen, he melts down. And while his show-stopping tantrums are really easy to look at and say, “He’s too old for that” or “He just needs more punishment,” neither of those will help him nor change his behaviors. And it’s really easy to look at us and say “They give in to him too easily.” But, it takes all our resolve to be patient and know that “giving in” on a small scale really doesn’t make a difference in the grand scheme if it helps him out of the terror he is in.

Picture having the flu. You’re hot and cold all at the same time. You fall over while getting one leg and then the other into your pajamas. You muster up all your will to go downstairs and get some orange juice and you spill it all over yourself while trying to pour it. And then while trying to clean it, you slip and fall in it. You look up at the sky and say, “REALLY God? Really?” On any given day, one of those things might be frustrating, but all at the same time is just too much! Well, I think that’s how Aiden feels every day. So if we can ease the amount of times he has to say “Really God?” then we consider that a win!

We are still learning every day, both about autism and Aiden. I suppose it’ll be years before we figure it all out. But we wanted to let you know because they say it takes a village, and a village is exactly what we need.

If you want to read more about it, autismspeaks.org has a lot of amazing resources, but it’s also really overwhelming! I put a link here for a quick little thing called “10 things your autistic child wishes you knew.” I think this helps put it in a way that’s not so confusing or scary!

I wish there were some list of “ways to deal with Aiden” that I could give to make your interactions with him better. All I can say is please just be patient with him, and with us. And try not to cast judgment. Know that we are doing the best we can to help everyone’s lives as happy as possible!

The road ahead is not going to be easy, but like the Beatles we hope to “get by with a little help from our friends!”

We haven’t told Aiden he has autism. We will deal with that when he’s a little older. Right now, we’re just working on pre-school!

I will close with a line from an old song, “One day at a Time, Sweet Jesus!” because that’s exactly what we’re doing!