Sunday, December 22, 2013

Carry On My Wayward Son

Pervasive Parenting
By Kodey Toney

Carry On My Wayward Son
I've been bringing a series of columns lately featuring the book “The Reason I Jump” by Naoki Higashida interpreted by David Mitchell. This is a book written by a teen from Japan who is on the spectrum. He gives some insight into what it's like living with autism. So let's carry on with more.
We have probably all noticed, whether on television or in real life, when people encounter someone with a disability we tend to change our tone. I think about a scene where someone is meeting a blind person and the first thing they do is start talking louder. I know this may seem silly, but it happens more than you would think. The person's hearing is not bad, in fact it's usually heightened, so why would we do this? We don't mean disrespect. We just feel like we're trying to help.
The same thing often happens when we meet people on the spectrum. This can come in many different forms, and though we think we're helping, as Naoki shows us, it actually is hurtful.
While many people may speak louder to someone with autism, one of the most common communication modifications is baby talk. We tend to talk in gibberish or speak the way we do to newborns.
In the section “Do you find childish language easier to understand?” Naoki addresses this issue. The answers he gives are not surprising if you think about it.
He explains that talking to someone on the spectrum is like talking to anyone else. Wow, what a concept! Let's treat everyone the same? Crazy idea, I know.
Let me start by saying that I never talked baby talk to kids. Besides finding it demeaning, we have to remember that children are followers. They mock what they see and hear. This can actually cause speech issues in the long run, and that's with any child, but especially someone on the spectrum.
Naoki said that he just wants to be spoken to according to his age and issues. He said in the book, “I’m not asking you to deliberately use difficult language when you talk to people with autism—just that you treat us as we are, according to our age. Every single time I’m talked down to, I end up feeling utterly miserable—as if I’m being given zero chance of a decent future.” And this is a person with low-verbal skills.
I think of my dad. He has hearing issues, so we all know to talk louder around him. However, most people don't know that, so they speak normal and he can't hear them very well. Someone usually has to tell them to speak up and all is well. This is the way we should treat someone with a disability. Until you are asked to change your communication just be natural.
The last thing you want to do is hurt someone's feelings, but often times we inadvertently do so just by trying to be compassionate. Naoki says, “True compassion is about not bruising the other person’s” self-respect"
This is something to think about

Have Yourself A Merry Little Christmas

Pervasive Parenting

By Kodey Toney

Have Yourself A Merry Little Christmas

As Christmas comes closer some of you may be scrambling to find last minute gifts. If you’re shopping for a child on the spectrum it may be a little more difficult than you think. While I would say that you should treat a child on the spectrum the same as anyone else, there are a few things you may want to consider before grabbing just any toy off the shelf.

Most parents know their children well enough that they know what to buy them for Christmas, but if you’re like me and Jen then you’re a little more confused when it comes to your child with autism. Kruz, our neurotypical child, has been very vocal about the things he wants…everything. However, when we ask Konner he doesn’t really say much. He has told us a couple things, but when we try to even that out with what Kruz wants it’s difficult.

This is not necessarily geared toward parents though. This may be for the grandparents, aunts, uncles, neighbors, teachers, etc. who are looking for some little gift for a child with Autism Spectrum Disorder (ASD) this holiday season. Many of these are just common sense for any child, but some you may not think about for children on the spectrum.

The first thing I would say is don’t buy anything with little parts. Small objects are hazards, but they may also be an issue for a child on the spectrum. Those small items can get lost easily and if they do there could be a meltdown in the works. The toy is probably useless from that point on because they will be upset about that missing part forever. Konner has had many full-blown meltdowns because he couldn’t find a toy or part, or something has broken. I can’t tell you the amount of toys I’ve either hid or thrown away just because something was missing.

Noisemakers are something I would avoid. I know you’re thinking that it is just the parent in me not wanting to listen to a toy play a song over and over, or a loud whistle or instrument. While that is partially true, the other aspect is that many children on the spectrum are sensitive to sound. These loud noises can cause irritation and are potentially more harm than good. As fun as it is to torture the parents it’s not that fun to torture the child.

Be cautious when buying messy items. If you’re looking to purchase things like finger paints, slime, or even Play Dough you might think twice. Again, while it’s partially because the parent usually ends up cleaning up the mess, you may have some children who are sensitive to touch. This is a tricky one because you want to encourage creativity with art, but if the child doesn’t like the feel of wet, slimy stuff then it could do more harm than good in the long run.

You don’t necessarily need to look at things age appropriate because children on the spectrum develop differently. Some may develop slower and some may be more advanced for their age. If you’re not sure just ask the parents.

I would also make sure that the child isn’t over sensitive or under sensitive to certain material. Some children like soft, fluffy stuffed animals, and some are repulsed by the feeling. Some children like rough, scratchy material like sandpaper, but for others this may make their skin crawl.

So what should you buy then? Think about calming items. Again, if they like soft things or rough things try to find out. Many kids with ASD like pressure, so you might look for heavier objects like body pillows, weighted lap pillows, and large stuffed animals. Visual stimulation is good as well. Projection lamps, things with motion, oil filled tubes such as the ocean wave simulators, and fish tank simulators are great ideas, especially for the younger children. Any kind of game that helps to build social or language skills is good as well. You may look at board games where they have to interact with other people or flashcards where they learn letters and numbers. Social story books are a great thing as well. Anything that will teach social cues and how to act around others will be beneficial for life.

The last thing I would say is just to know their special interests. If they are into trains, which many are including Konner, then buy train stuff. Legos, while including many small parts, are also versatile. There are Legos of all sizes so they are age appropriate, and they make Legos for everything. If your child is into Ninja Turtles, Thomas Trains, Star Wars, etc. there is a Lego set for you out there somewhere.

All of these are just ideas. Keep in mind that they are sensitive and that they are children. Don’t over think it. They’re going to be happy to have something for Christmas.

Sunday, December 8, 2013

Family Vacation

Scout Cookout



Pumpkin patch


Looks just like PopPop

Cub Scout Camp


Kruz & Konner

Snow Play


Konner's Snowy

Konner made this all by himself!!

Why Do We Never Get An Answer

Pervasive Parenting
By Kodey Toney

Why Do We Never Get An Answer

In a recent column I started talking about a book I have been reading. “The Reason I Jump" by Naoki Higashida, translated by David Mitchell, is an account of living with autism from a teen with low verbal skills. I'd like to share a couple more interesting points from this book.

One question asked was, "Why do you ask the same questions over and over?" I've noticed this at times with Konner. He will ask something like, "Where are my shoes?", and my response will be either that I don't know or maybe in your room. He will come back with the same question in a minute or two. I've often times wondered if he's even listening to my response.
Naoki gives a simple response, but it helps us understand what may be going on inside. He said, “I very quickly forget what it is I’ve just heard."
For this very reason mornings are almost always a bad experience in our house. This forgetfulness mixed with Konner's Attention Deficit Hyperactivity Disorder (ADHD) causes my patience to wear pretty thin. The fact that I'm not a morning person just amplifies the situation.
I'll ask Konner to do a simple task like, "Konner can you find your shoes?" I make sure that I say his name first so that he understands I'm talking to him. I try to make sure he's directly in front of me, and that he hears me. I'll often ask him, "Do you understand?", and wait for a response. I try to give him choices like, "Look in your room and in the computer room." 
I'll look up five minutes later and he's still running through the house back and forth screaming. 
So I then say (or yell sometimes), "Konner, what did I just ask you to do?" His response is almost always, "I don't know daddy."
Then we have to go through it again. 
Other times his memory is very impressive. He can remember things about trains, Minecraft, math, and television programs that I don't understand. I wonder sometimes if he just has selective hearing.
Naoki explains, “My memory, however, is more like a pool of dots. I’m always “picking up” these dots—by asking my questions—so I can arrive back at the memory that the dots represent.”
What this means is that as he asks a question and gets an answer he stores them away in his brain as dots. We store data in a continuous stream, like a timeline. We try to recall things as they happen by events of that day. People on the spectrum have to sort through the dots to find the information they need to remember things, and then express them verbally. Thus is probably why it takes them some time to respond when questioned. 
This is only a small look at verbal issues, but I hope it helps shed a little light on the difficulties of communication. 

Jealous Again

Pervasive Parenting
By Kodey Toney

Jealous Again

My wife, Jennifer, called me the other day and said, "Kruz just asked me out of the blue, 'Why does Konner have autism and I don't?'" 
We've always tried to explain to him that Konner has autism, but I'm not sure if he truly understands.
So, when I got home I laid down with him and Jen and tried to tell him the best I could.
Kruz is five, and is in a bit of a selfish stage. He's in that stage where if someone else has something he wants it. You know, like a toy he hasn't played with in months, but suddenly he sees someone else with it and he has to have it because he, "was playing with it!" I think he was a little jealous that Konner had something that he didn't have. 
I tried to keep it as simple as possible. However I really wanted him to realize that, while it's not a great thing, it's not necessarily the worst thing. 
So I began by explaining that God thought he needed to be unique. I know this May sound cheesy or cliche, but I really think that Konner's autism is a blessing in disguise. If nothing else it has given me a different outlook on life and disabilities. That in itself is a blessing. 
I then started to tell him the bad things that make him different. I said, "Do you know how Konner gets frustrated, screams, hits, pinches, and bangs the (computer) mouse? He does this because he is upset over things going on around him. He smells thing stronger than we do. He sees hears things we block out. Things feel different to him. His clothes itch and poke and scratch him all the time."
At this point I could see him trying to process the information. I tried to explain that these things cause him to be upset many times.
I told him how the autism also affected his thought process. He has to think when talked to, or asked a question. This is why it takes him longer to do things in the morning.
I wanted to make sure that there were some very good points too though. So I explained that Konner was better at certain things than most. I told him that he was really good with numbers and math, and that he can read better than most.
I'm still not sure he fully understands, but I do know that he has at least started to think about some, and that's a good step. 
I think it's important that siblings understand what is going on with their brothers and sisters. We just need to make sure that they are getting the good an the bad. It can help us in the long run when they try to help out or when someone is making fun of someone else with a disability they can try to step in and educate.