Fathers For Autism

I am a road-worn father of an amazing autistic daughter and NT son. I started this blog to provide information, a sounding board and a voice for fathers of autistic children.

More to see on my Facebook page.

Friday, March 15, 2013

STFU and Listen! - March Edition

Time to get real again...

* Find a way to make a connection.

I hear this one a lot: I just don't connect with my child. 

It's not your child's job to connect with you any more than it is their job to provide shelter, food or clothing. 

You're the adult, figure it out or make something up.

Pay attention to what they do all of the time and join in. You may not want to line up trucks for 3 hours, but you might find that you can lessen that behavior if you are an active part of it, rather than a bystander who simply tells your child to stop doing things.

Which brings me to the next point...

* Stop telling your child to stop doing things if you don't have something else for them to do.

I absolutely HATED this as a child. My mind was working 100 miles a minute and someone just kept derailing my great ideas. Fortunately, I had an older brother who had even more destructive ideas, but you get the point. If you don't give me something fun and positive to DO, I am just going to keep finding alternative ways to blow up the house.

One of the things we do with my daughter, when she thinks she's being 'clever', is we'll give her three options and allow her to decide. Once she's decided, she's on the hook for following through and feels empowered because it was her choice.

* "This sucks" "...deal with this" "stupid autism thing..."

Really?

If you surround the challenges in your life with words that further support the negative aspect of it, you are only becoming part of the problem.

Your words enhance your life. It's true. Try using words that enhance it in a positive way rather than being Debbie Downer all the time. Seriously, nobody wants to hear it, especially your child who may already have an understanding that he or she is different. Allowing them to then hear that they are also a burden, a problem or a drag on your life is irresponsible, mean and wrong.

* Improvise!

Don't be afraid to try something new, every day. You might find that one thing, that one style of play, that allows your child to open up.

Most people don't want to do the same thing every day, neither does your child. Although something might work, give yourself the freedom to try new things just to see where they lead.

You might find that you enjoy the process a little more as well.

(Again, these are this month's musings. If I offend, that is not my intent. My goal was to lay it out there, open and raw. Sometimes that is the best way to clean a wound, bandage it and allow it to heal.)

Thursday, March 14, 2013

What is Autism...

Had a conversation with my son last night.

Son: "What's Autism, Daddy?"

...wow...where to begin...

His eyes were so honest, so innocent. He truly cares about his sister and tries to help all the time. He is fully trained in ABA and DTT and has a PhD in reverse psychology.

He's only 5...he shouldn't worry about this yet.

Rather than avoid the topic, like I did when the word 'sex' appeared on Family Feud ("it means gender, buddy"), I tried to give him a description that would make sense to him. He's earned it.

I sat down on the couch with him and we talked like two old souls playing chess in Central Park. He looked at me seriously, as only he can, and put his arm on my shoulder...his bear firmly tucked under the other arm.

Daddy: "Autism is different for everyone, buddy. Some have trouble with their bodies, some have trouble focusing, and some have trouble with their words..."

S: "Like, my sister!"

D: "That's right. You know how she sees things differently than you do? (He nods) Well, there are a lot of other people who look at the world the same way she does. You look at this rug as something to keep the floor from being scratched, but she sees all of the patterns, designs and colors that make up the rug. They leap out of the rug like a 3-D movie."

S: "That's really cool..."

D: "Yeah, it is, huh? Sometimes, it's so cool that she just wants to look at those things rather than the other people in the room."

S: "I would, too!"

D: "Yup, it would be pretty awesome. But, it also makes it hard for her to focus when she needs to talk to us or work with her teachers."

S: "Or play with me..."

D: "Right. That's why we work so hard, because we really want her to come out and play. She's a lot of fun when she plays."

S: "Yeah...but, Daddy, why does she babble all the time?"

D: "Hmmm...what's your favorite song?"

S: "Umm...Gangnam Style!"

D: "Have you ever had it stuck in your head? Playing over and over again?"

S: "Yeah. Sometimes it's stuck there forever..."

D: "Right. Well, she does that with everything she sees or hears. Sometimes, six different things are playing all at once, round and round in her head, and she can't help but let them out."

S: "Wow...that's amazing..."

D: "I know, right? Also, she has superpowers. She can see, hear, touch and taste way better than we do. But, it makes her super sensitive to everything."

S: "Oh! Oh! Like Daredevil doesn't like loud sounds! Is that why she covers her ears, Daddy?"

D: "Yup. That's also why she has trouble with certain foods, bright lights, and scratchy clothes. Her super powers."

S: "Well, I think that's cool. I have super powers, too. I can run super-fast! She and I can be a team, right, Daddy?"

D: "You already are, buddy, you already are. I love you so much."

He hugs me.

S: "I love you too, Daddy."

ADHD...

Went to the Pediatrician yesterday for my son's checkup. 

My son was very excited to see him because he gets to ask all of his questions. My son talks and talks all the time...complete opposite from my daughter. 

He's also very bossy. So much so that his Teachers call him the Mayor of Pre-School. He directs the other kids in the playground activities and, if they don't follow his orders, he lets them know when they have gone astray from the plan.

Having grown up a bright, aware younger brother in an ASD household, he has mastered DTT and ABA along with a stern but calm voice and follow through.

Of course, we had some serious concerns when we were deciding whether to have a second child as we were already overwhelmed with therapy sessions and such, so we were worried at doubling up.

Would he also be autistic? How well would we manage both?

So many other questions entered our minds as well.

As he grew, we watched him very carefully for any signs. He was highly social, painfully so at times, and didn't have any physical delays. All we saw was an excitable little guy who couldn't sit still for fear of missing the chance at getting attention.

Yesterday, he was diagnosed ADHD.

Not major. Not the same challenge as my daughter. Still...

First thought that came to my mind was "He's the same guy he was before the diagnosis and I love him so much. Little Man, you landed in the right place, because we will do anything we can for you no matter what challenge life presents.".

As weird as it sounds, I was proud of him and myself at that moment. He and I hugged. Hard. I threw him in the air a few times and went for ice cream. Maybe not the most appropriate treat considering the diagnosis, but we needed it.

I carried him to bed last night, kissed his forehead, and whispered "I love you, Buddy" in his ear.

I thought I saw a small smile in the dark. Love that.

Devil's Advocate

"Devil's Advocate." 

For those who don't know this term, it is where someone indicates flaws in a plan or how something could go wrong. 

This can be a useful vehicle when brainstorming an idea or tackling a tricky problem. 

It can also be devastating to positivity and progress if wielded too heavy-handedly, especially when it is always one-sided. 

For example, if a couple of people are trying to solve a child's behavior issue (chewing toys, screaming, etc.) and one person has been presenting ideas and thoughts on possible solutions while the other continues to knock them down, progress will never be made. In fact, the end result is usually frustration and bitterness. Typically, there will also be a reluctance to have future conversations.

In the end, the child loses.

Being able to foresee potential pitfalls is extremely helpful and needed considering what's at stake, but simply calling out why things won't work, without presenting ideas that might work, will make people avoid talking to you.

Why would they want to?

Ideas are personal. They come from a place of creativity, positivity, insecurity, and hope.

When someone presents a new idea, they are placing a part of themselves into your hands for review and scrutiny. When the ideas are around the development of their child, the stakes and emotions are even higher.

Give a little. Try to consider. Don't be a jerk.

The key to constructive conversation is compromise, balance, and effective listening.

The goal is the same: do the best we can for our children. How we get there has everything to do with how well we can work together.

Lost and Found...

A couple of years ago we transferred my daughter to a new school due to safety issues. 

Unfortunately, it meant that her best friend would be left behind. He was always next to her, protective, helping her along as he was better at his words and awareness. 

It was gut wrenching for her to go. 

My wife and I moved recently and found out that his family lives across the street from us. 

Today, the were reunited.

It was so cool. He saw her and yelled "Hi!!". She saw him and gave a squeal.

They ran across the cul-de-sac towards each other with their arms open. They crashed together in a big hug, laughing.

They played for a bit and, at one point, he gently touched her face and said "words...use your words...".

The moment was magical, ethereal and stunning. My heart is still outside my chest...beating hard with joy.

Maybe, just maybe, this is a sign of the future. I hope...

Clarity...

The Redhead screamed in frustration. A high, loud, piercing sound. 

I turned. The look in my eyes stopped her cold. 

Papa Bear: "Have a seat on your bed."

The Redhead sits. 

I kneel in front of her and she hugs me. We hug in silence for a moment while she looks at the words video behind me. 

Redhead: "A bagel"

PB: "Baby, is it hard to use your words?"

R: "I see a bagel"

PB: "I really want to hear what you have to say. I want to know what you're thinking, what you wish for, what you dream."

R: "A circle"

PB: (Teary-eyed) "I love you so much, Punkin."

I squeeze her once more and start to pull away. She grabs my shoulders and holds me tighter.

R: (Whispers) "Don't ever let go, Daddy."

PB: (Whispering back) "I won't ever let go, baby. I will always be here for you."

R: "Forever and ever..."

PB: "Forever and ever. I love you, baby."

R: "I love you, Daddy"

She let go and started singing along, wordlessly, to the video.

The moment of clarity was gone. I was there, though. I saw it and I will always remember it.

Wednesday, March 6, 2013

Words...

Words are powerful, invasive and life-changing.

Be it a compliment from a crush, a harsh word from a parent, or an epic story, words have the ability to cause emotions. They can take us on a journey to far away places where we can release this world in favor of the spectacular or they can destroy our self-confidence in the blink of an eye.

I have been both the purveyor and victim of words.

When I was young, I was brutally beaten down by others, physically and verbally. I was called names, beat up, chased home and tormented. The joke was that I was clearly the fastest kid in school because I was chased home every day.

People would demean me in class or hit me in the playground. I was often assaulted by 3 or 4 kids at the same time. Kids that were older and bigger than I was.

Eventually, I got bigger, learned to fight and wasn't beat up again.

The words lingered...

You see, I was able to heal the bruises, the scrapes and the bloody noses...I will always remember what was said. The fights injured my body, but the words injured my soul. I will never fully recover from them because they affected how I thought of myself and how I interacted with others for the rest of my life.

Nowadays, I am fairly immune to negative influences; I am too seasoned for that. Might be that my past scars created a barrier to those that would try to hurt me...a karmatic shield, if you will. Unfortunately, they also prevent the old, unhealed wounds from closing.

It's important to understand that what you say, especially to those who are not battle hardened, have a lasting effect on their whole being.

I will never forget, never stop hurting from, being called a retard.

One of the many monikers placed on me, all of them as degrading as the next.

Again, words are powerful. They can destroy a childhood for sure, they did mine, but they can also bring hope, provide comfort and elevate joy.

The words you choose don't define the person you're describing, they define you.