My Son Has Autism

Aiden and Owen had friends over to play today and Aiden's Autism was especially noticeable... and I found that especially tough.

Most of the time Aiden is just Aiden and not "Aiden-the-Autistic-kid" in our family. He is just my son and his "issues" are in the backseat. But today the Autism grabbed hold of my heart and squeezed.

Here is how having a friend over to play typically goes for Aiden:

1. The friend arrives and Aiden immediately invades his personal space. He jumps and laughs and goes uncontrollably crazy in his giddiness that a friend has actually arrived at our home to play with him. After all that doesn't happen very often.

Personal space and boundaries are very difficult for Autistic kids to understand.

2. The friend feels overwhelmed and starts to back away. Aiden needs help calming down.

Reading another person's facial expressions (ex. the facial expression that says "yikes, back away") and understanding the emotions behind them is next to impossible for an Autistic kid.

3. Aiden realizes he wants to show his friend his room. And yes, this happens with every visit.

Autistic kids tend to be very attached to their "stuff".

4. Owen has joined into the fun (it's his room too) and then Aiden feels compelled to fight for the guest's full attention.

Understanding WHY people are doing things in interpersonal relationships is extremely difficult for an Autistic kid. It is easy for them to misunderstand and get their feelings hurt.

5. Aiden and his friend play well together until the friend wants to play something else. Then Aiden freaks out. Parent intervention is usually required to help Aiden transition to a new game. Sometimes it works and other times Aiden needs time alone to calm down. The friend will often play with Owen at this point which distresses Aiden even more.

Transitions are incredibly hard and can be very confusing for an Autistic kid. Understanding another person's point of view is not a skill that comes naturally to them.

6. That cycle repeats as long as the friend is at our home. Aiden doesn't understand why everyone doesn't want to play the same game the same way as he does. He struggles to follow another child's lead. He is easily threatened and is easily upset. He pouts when he doesn't get his own way. If he does something funny and the friend laughs he continues to do the funny thing over and over again until well after it has ceased to be funny. He generally frustrates the heck out of whoever he is trying to play with.

It can be very hard for an Autistic kid to know the difference between someone laughing WITH you and someone laughing AT you.

7. Play time is over and it is time for the friend to go home. Aiden bursts into sobbing wailing tears begging the friend not to leave. The friend is generally quite uncomfortable with this bizarre display of affection.

Autistic kids tend to do quite a few things that are not always socially acceptable. They don't always know what is appropriate in social situations.

So there you have it. Aiden is emotionally spent by the time the "play date" is over because he has had to work so hard to get along with the other kids.

Some days stuff like this doesn't phase me at all. But some days... like today... watching the way my son interacts with his peers makes me so very sad. I just wish it didn't have to be so hard for him.

1. Plan Ahead

Preparation is the key to enjoying your time away.

Travelling can be stressful for everyone but for a child with Autism it can be a nightmare. The lack of familiarity and all the changes in schedule and daily activities can send a kid with Autism right over the edge into a full meltdown. Make sure that there is somewhere for your child to go to calm down. Bring the things your child uses to self-calm, such as their weighted blanket or fidgets, along with a few snacks in a bag with you everywhere.

When you are planning your trip try to choose accommodations and activities that will appeal to your child. If he or she is excited about where you are going and what you are doing it will help to lessen the stress of all those transitions and new experiences.

Try to accommodate your child's sensory needs as much as possible. If your child is especially sensitive to sound and you are planning a day at an amusement park bring ear defenders or headphones to help them block out some of the noise. Children with Autism are easily overstimulated but with a little planning you can help ease that pain for your child.

Make sure you take all the necessary medications and special dietary items needed. Be sure the things you need are available where you are going!

2. Prepare Your Child

Warn you child of the upcoming adventure and talk about it often to get them used to the idea. Most kids with Autism are not huge fans of big surprises so preparing them is vital. If your child gets overly anxious and obsessive about trips you could use social stories and visuals of the trip to help. For example you can do a social story about flying on an airplane and show them pictures of your destination. Fear of the unknown can be huge for a child with Autism so the more they know the more secure they will feel.

If you are travelling with friends or heading out to visit relatives be sure to prepare them for your child as well. Helping them to understand Autism and your child will help everything run a little more smoothly.

3. Prepare Yourself

Go with realistic expectations. Don't expect too much of your child OR of yourself. Being flexible can save everyone a lot of stress. Keep it simple and have fun!

I was reading PostSecret and I read this postcard and the two email responses after it.

Response 1
(Email)
I wonder if straight people know how lucky they are to be straight.

Response 2
(Email)
I wonder if any white/non-white/straight/non-straight people know how lucky they are to not be autistic.

It made me cry because it is just so true. My son is autistic and struggles every single day to have friends, to understand social cues, to try and not be angry and sad all the time. There is no group of like-minded individuals for him to be a part of in our town. He is alone in his struggle. He has us... but not even we can fully understand how his mind works no matter how much we wish we could.

I'm not saying other groups of people don't have struggles... we all know that they do and they shouldn't be minimized. However I AM saying be thankful for the good. Be thankful that you are not alone. Be thankful that there ARE people who understand you. Be thankful that you aren't an 8 year old boy who has to spend all day, every day, trying to figure out and live in a world that is so not set up for him.

My son Aiden does not get invited to many birthday parties. Usually about once per year.

His younger brother Owen gets invited to many birthday parties in a year. And now his little sister Olivia has joined in on the birthday party train.

And it makes Aiden very sad. It makes me sad too.

Don't get me wrong, I know why he doesn't get invited. He has Autism and Autism makes birthday parties tricky.

Here is how it usually goes...

1. Aiden arrives for the party.

He is unbelievably excited to give his friend the special gift he has chosen for them but he is a little nervous too because he doesn't know what will happen.

New things can be very stressful for a kid with Autism, even new things that they are very excited about.

2. Aiden goes nuts with excitement over seeing his friends and the thrill of a birthday party.

After all he only does this a couple times a year at most. This excitement causes him to overwhelm his friends and their parents.

Kids with Autism usually don't do personal boundaries very well. Many prefer not to be touched but some, like my son, regularly invade people's personal spaces.

3. Time to play

This is usually when things go well for a few minutes... until someone does something that Aiden doesn't agree with or understand. Then the tears and the fighting will begin. Parent intervention is required.

Kids with Autism usually don't do transitions well. When kids play together the rules of the game are fluid, things change quickly and this is not a problem for most kids. A child with Autism can quickly find himself lost and confused and frustrated. They just start to figure out the rules of the first game and everyone has already moved on to the next game.

4. Aiden tells everyone what game they SHOULD be doing.

Sometimes this goes over well and everyone thinks it is a great idea and Aiden is ecstatic.

Most of the time this creates conflict. The kids don't understand why Aiden doesn't want to play the game with them, Aiden doesn't understand why the kids don't want to play his game. Aiden takes this as a personal attack. This results in anger and tears and more required parent intervention.

Kids with Autism tend to be very focused on the things they love and they have an extremely hard time understanding why the whole world doesn't love the same things they do.

5. Time to eat

For most kids this is great! Yay food! For Aiden it is as if someone has announced the death of fun. Loud complaints and tears ensue.

Transitions suck for kids with Autism

6. Aiden hates the food

All the other kids are thrilled with whatever kid food has been placed before them and dive right in. Aiden doesn't touch a thing and refuses to sit still.

Autism comes with a whole host of sensory issues, one of which can be food aversions. Many Autistic kids have a very self-inflicted limited diet.

7. Time to eat cake

Aiden likes this part. The other kids like this part. Everyone is happy.

Autistic kids are kids too

8. Time to play again

The kids are now all hyped up on sugar and chaos ensues. Aiden goes into full ADHD hyper mode and freaks out kids and parents alike.

Autistic kids do not do well with chaos. They all react differently to it- some withdraw, some get hyper, some throw a fit... chaos is not good.

9. Time to open presents

This can be tough for a lot of kids. Watching someone else get presents that you can't have is stressful. Most kids have figured out how to at least pretend they are happy for the other child. Aiden gets sad and says things like "I wish I had that".

Autistic kids have a hard time putting themselves in someone else's shoes. They also don't like or fake-it well. If they don't like something you will know about it. If they love something you will know it. On the up side you will always know they are telling truth.

10. Time to go home

By this time Aiden is completely over-stimulated and he begins to weep and wail that he will never see his friends again. He throws himself on the ground in protest and abject despair.

Many Autistic kids live in the "right now" which can come with some very strong emotions.

So ya, I get why he doesn't get invited to many parties.

But the older he gets the more he KNOWS he doesn't get invited to the parties of the kids he really believes are his friends. And that is heart-breaking.

It is Olivia's birthday party this weekend and Owen is invited to another friend's birthday party on the same day. When Aiden realized this he said " so I don't get to go to any parties? Olivia only wants girls and princesses at her party and none of my friends ever invite me to their parties. It's just not fair."

And you are right Aiden. It is just not fair.

But you know what is beautiful? Owen immediately said "I will call my friend and ask if you can come with me and we will have fun together" and Olivia said " no Aiden you can come to my party and be the Prince!".

* insert mommy bursting with pride and crying here*

My kids are awesome.

Aiden has always loved piling blankets on top of him, the heavier the better. Kids with Autism often love that sort of thing- it helps Aiden calm down.

My sweet mother-in-law made Aiden the most amazing weighted blanket. Aiden adores it. It has a bunch of pockets where you put small bean bag type things which means you can adjust how heavy the blanket is.

Weighted blankets are only meant to be used for small periods of time (about 20 mins or so at a time)- it is not a blanket to sleep all night with or anything. Although Aiden would love to. But if he did that then his body would get too used to the weight and it would be useless.

Weighted Vests or Blankets: The concept of the weighted vest or blanket is based on the technique of deep pressure. Deep pressure is used to assist the child to self-calm and relax so that sensory stimulus can be processed. The use of a weighted vest or blanket is thought to provide the child with unconscious information from the muscles and joints. Children who are easily distracted, hyperactive and lacking in concentration are said to respond positively to the additional weight.

- taken from the Autism Society of Canada website

Someday I should try and take a video of what a huge difference this blanket can make- Aiden can be stressed out and put the blanket over him and he calms right down. Aiden responds amazingly well to deep pressure techniques. We've known that for years but this is our first time using a weighted blanket.

My dearest Aiden

Today you turn 8 years old and I can hardly believe it has been that long since I first held you in my arms. You changed my whole world by your very existence!

You have taught me so much in your 8 years.

That first year of your life you were pretty unhappy- you cried and cried and cried. We went to see a lot of different doctors and they all seemed to think it was "just" colic and that you would grow out of it. Some of them thought that it was my fault that you were so unhappy- they thought I wasn't parenting you properly. They gave me a lot of really bad advice... but when I would try to do what they said we both knew it was all wrong.

We know now that you have all sorts of sensory issues and that was probably what was making you so uncomfortable. The lights were too bright, the clothes were too hard, the food didn't taste right, the sounds were too loud, the stuff around you was all too much. But I didn't know that then. I wish I had.

But we figured it out together- you, your dad and I. I learned that you felt most comfortable being held against my chest... and so that is what we did. A lot. I loved it when you snuggled up close to me because you would stop crying and your whole body would relax and you would be ok again. I learned to breath and let the world around me fade away so I could really focus on what was most important- you!

You taught me to trust my mommy-instincts. I had NO idea how to be a mommy before you came along. There were a lot of times that first year when I felt really overwhelmed. I was so sad that you were so unhappy. I KNEW something was wrong but I just didn't know how to fix it. And so we spent a lot of time crying together that year.

But I promise you that I have been so thankful for you every single day of your life. I am so glad I am your mom!

Over the years you have grown into such an amazing kid. You astound me. You have so very many challenges to overcome- your Autism & ADHD & sensory issues & Asthma is so much more than I think ANY kid should have to endure. I am so proud of you.

Your dad and I have struggled a lot over the past 8 years trying to learn how to parent you in the right way. I read about a thousand books and tried all the conventional parenting strategies... and you taught me that not every kid is the same. What works for one kid might not work for another kid. Even if something works for MOST of the kids it doesn't mean it will work for ALL of the kids.

I've learned not to care as much what other people think. You taught me that sometimes it is more important to just let someone freak out loudly or to hold them softly when they cry- even if the whole world is standing there looking at you like you are a moron.

You taught me that sleeping through the night is not a necessity... but hearing "I love you mommy" is.

You taught me how to play cars and Lego and how to make vehicle sounds.

You taught me that God always takes care of us- just not necessarily in the way we expect.

You taught me to laugh even in the midst of chaos.

You taught me that a perfectly clean house is highly overrated.

You taught me to be an advocate, to really stand up for someone when they can't do it for themselves. To be persistent and determined to do what you know is right.

You taught me not to be so judgmental. To accept people for who they are- for who GOD MADE THEM to be, not try to make them into something they are not.

You taught me to love more than I ever thought was possible.

Aiden, I wish I could take all of your struggles away. I wish I could make school and friendships easy for you. I wish I could snap my fingers and make your Autism disappear. I hate it that I passed my Asthma on to you and you have to take so many meds just to keep it under control.

But I can't take that stuff away. It breaks my heart to see how tough life can be for you, to see how frustrated and angry and hurt you get. But just know that no matter what I will ALWAYS love you and think you are super cool.

I love your laugh and your sense of humour. I love your grin and the gleam in your eyes. I love your creativity and intelligence. I love your hugs and how sweet you can be. I love your passion for life.

I love YOU Aiden. Happy birthday honey.

Always,
Mom

1. Try to prepare yourself and your children for what to expect from the autistic child.

If you don't know what to expect ASK the parents. Most special needs parents are happy to answer honest questions. If you are not comfortable asking you may want to do some research on the internet prior to your visit but remember that all Autistic children are different.

Make sure your whole family knows that extra patience and understanding is needed. New situations can be very stressful for kids with Autism and could cause some undesirable behavior.

2. If gifts are involved check first with the child's parents to make sure you get something appropriate.

There may be certain things the family tries to avoid and they could probably give you some idea of what the child will really like.

Autistic kids don't lie or fake-it. If they love it you will know. If they hate it you will know. Think of this as a positive trait- you will always know that they are telling the truth. Always. That is a beautiful thing.

But if they are unhappy - either with the gift itself or the fact that cousin Jimmy got a cooler gift or the beautiful handmade sweater feels scratchy to their sensitive skin%u2026 don't take it personally.

Put yourself in their shoes and know that life is a heck of a lot harder for them than it is for you. Every. Single. Day.

3. Accommodate the child and family whenever possible.

Try not to be offended at anything the child does- whether it is refusing to hug you, invading your personal space, refusing to eat that lovely dinner, or covering their ears when you sing together.

Holidays can be a crazy time for everyone and all those changes are very hard on Autistic kids. Autism comes with a whole host of sensory issues. Lights can be too bright and hurt their eyes. The cold snow can actually feel painful. Not knowing what is happening next can cause panic. Lots of happy family chatter can actually be really stressful for some Autistic kids.

Some might withdraw. Some might get crazy hyper. Some might have a complete meltdown. Some might make repetitive movements like turning in circles and flapping their arms.

Just react calmly and remember that the whole world looks and feels different to a kid with Autism.

4. Avoid giving the parents any advice or judgmental "my child doesn't behave like that" looks.

Trust me when I tell you every single parent of an Autistic child already knows their kid is different. They have already looked into the best parenting methods and treatments and probably don't want to hear about how going gluten-free cured your friend's uncle's son's autism (even if it really did).

Everywhere they go people give them advice and condescending looks. Be different.

Trust that they really do know how to parent their child even if that looks very differently from the way you parent your child.

We love our kids. We want you to love them too. We appreciate your concern but we are doing the best we can and if we want your advice we will ask for it. Just loving us is the very best gift you can give a family with Autism.

5. Have Fun!

Don't focus so much on the special need that you forget to enjoy the time together.

Remember that there is an amazing kid in there and Autism can make that a bit harder to see. But try. It is worth it.

Be sure not to ignore the neurotypical (aka "normal") siblings of the Autistic child. They get ignored a lot and life is tough for them. They need extra love and attention too.

Focus on the good and enjoy your visit!