Sunday, May 27, 2012

Looking Around the House

Over the years I have heard Konner talk about using something called Zac Browser. We first heard about this software when Konner was in head start. Now I knew that this was a site for children with autism, but I had never actually researched it. This seems like a great site, especially for younger children, to help learn how to use the computer.

The problem with most search engines is that they are not kid-friendly. In fact they are geared toward adults to help locate their interests. With this in mind, one grandfather came up with a program to help his autistic grandson navigate the internet easier.

According to the website zacbrowser.com, John LeSieur, a software developer who has two grandchildren on the spectrum, designed the browser and launched it in 2008. The site states:

At age 5, Zackary was enrolled in a specialized school. One of the proposed activities was to have him spend time using the computer. Zackary didn’t like this activity at all. It seemed that every click lead to a different result than what he expected. On several occasions he simply pushed away the keyboard or threw the mouse.

When I heard about his experience using the computer I asked what software his school was using and I was surprised to find out that Zackary was using a conventional browser with a popular search engine. I thought to myself, “Wow, How frustrating for Zackary” – Zac needed a tool to provide the best sites and protect him from undesirable content.”

This can be extremely true. Konner is a wiz when it comes to the computer. However, there are some very inappropriate things that are very easy to find. With Zac Browser we don’t have to worry as much about what he is doing on the computer.

The browser is very easy to use. You go the website and push the download button. It installs an icon on the desktop which is easy to find and takes you directly to a page with six other icons. These will serve to link the child to kid-friendly pages including an aquarium, television, stories, music, games, and whiteboard.

The aquarium is simply a page with fish swimming around an underwater scene. This seems too minimal, but trust me it used to be one of Konner’s favorite things. In fact, when he was in kindergarten his teacher had a similar item in his safe room and he loved it. It would keep him occupied for a while and calm him.

The television link includes many videos that he can connect with and enjoy for hours. This is great because Konner has recently discovered youtube.com. The problem with youtube is that anyone can upload videos. I have been sitting in the living room and overheard some of the videos that he has downloaded on youtube and had to run to the computer to stop it. With this I don’t have to worry.

The stories button will take you to classic tales which are read aloud. They are also animated which grabs the child’s attention. When I was looking at the site I turned one on and both boys ran to me to watch. One turned into three. I finally had to turn it off so I could continue writing.

The music page included interactive music games and sites. This of course if a favorite of mine, but when I was checking this out Konner got behind me and was entranced at one of the sites. There were band members that you could turn on an off with different styles of music and instruments. It was by FisherPrice and played popular children’s songs.

Games are what Konner used to enjoy the most. He would play with games that were very interactive, and geared toward children on the spectrum. There are also popular games from Angry Birds to Dora and Calliou.

Whiteboard is basically a draw and paint game. This keeps him entertained and lets him explore his creative side. When asked Konner said this and the games were his two favorite things about Zac Browser.

He doesn’t use this as much as he used to, mostly because he has outgrown some of the things on it. The other reason is that he learned how to explore using it and has moved on to other sites. Occasionally he will get on this though and play for hours.

The best part of this is that it is a free download. The site says that, “Over the past 3 years, Zac Browser has helped over 2.5 million children from around the world with autism by providing a free software solution filled with activities and videos.”

I think this is actually a great tool for a child of any age with or without a disability.

Disclaimer: I am in no way claiming to be an expert. I’m just a father who is trying to learn as much about Autism as I can to help my child. I hope that you all can learn from me, and I from you. I ask anyone who has questions or comments about something I have written, or autism, please contact me at pervasiveparenting@hotmail.com. I will try to answer questions as I have time, and if I find it interesting enough I may touch on it in my column.


Sunday, May 20, 2012

Volunteers of America

As a parent of a special needs child one of the biggest concerns is always what’s going to happen to them when they get older. As we age we realize that we will not always be around for our children. This is a concern for all parents, but if you have a special needs child you really begin to get scared. If you have an autistic child who is high functioning you tend to tell yourself that your child would be okay on their own, but if they are more severe on the spectrum you know that they will need assistance for the rest of their lives. Either way there is uncertainty. This is where one state program can help to ease this anxiety. The OK-AIM program works to make sure that adults with special needs are taken care of, and they are currently in need of volunteers.

According to the website (http://www.ddadvocacy.net) Oklahoma Advocates Involved in Monitoring (OK-AIM) was “created by the State of Oklahoma to ensure that people with developmental disabilities live quality lives and receive the best possible community-based residential services.”

The backbone of the program is the group of volunteers that monitor the homes of individuals in need. According to Susan Reed, Area III Field Coordinator, the program is in need of more help. One of the main regions of concern is the Poteau area, but they can use assistance throughout the state.

So you may ask yourself what these volunteers do. According to the site they visit homes of people in their area with developmental disabilities to observe the quality of life inside the residence. They then give the information to the OK-AIM staff so they can make the proper adjustments for the residents.

During a home visit, a team of two volunteer monitors will evaluate four distinct areas:

1. Regard for the Individual

2. Personal Growth

3. Staff

4. Physical Setting

Written responses are sent to volunteers so they know when unsatisfactory items they may have reported are corrected, improved, or changed. This lets the volunteer know that what they are doing is truly helping improve a person’s way of life.

Individuals with developmental disabilities, members of their families, and interested Oklahomans are welcome and encouraged to enroll as OK-AIM volunteers. Volunteers receive training and materials that prepare them to make monitoring visits.

This is important for the individuals out there without families to care for them. They have nobody else to make sure they are getting the proper services they need.

This is a great program for anyone who enjoys working with individuals with disabilities. You also get the chance to make new friends in areas you may not have thought of before. If you become part of this great program you will have a coordinator to help you with the process. Reed said that all travel is reimbursed as well as some meal expenses. There are no degree requirements to become a volunteer.

One volunteer shared the following story on the website:

“We were visiting a young man who proudly lived in his own apartment. While we were there we asked him about smoke alarms and fire extinguishers. He showed us the fire extinguisher in his kitchen but when we tested his smoke alarm it didn't work. I decided to check the batteries, and upon looking, found there weren't any in the detector. He said that he had taken them out for his remote control car and forgot to get more. The other monitor and I went to the store and purchased some new batteries and put them in the alarm for him. He hugged us both and said "Now I can sleep tonight". We both laughed and left with happy hearts knowing that he was safe and that we had a life-long friend. To this day whenever he sees us, he comes and gives us a hug and reminds us of the time we bought him batteries for his smoke alarm.”

There is a very good video at http://www.youtube.com/watch?v=ikCs6PEMyX8 that explains the program with help from volunteers.

Volunteers are needed in all parts of the state to make monitoring visits. For information, e-mail OK-AIM at okaim@ddadvocacy.net or call the OK-AIM Coordinator Susan Reed at 877-255-1196.

Disclaimer: I am in no way claiming to be an expert. I’m just a father who is trying to learn as much about Autism as I can to help my child. I hope that you all can learn from me, and I from you. I ask anyone who has questions or comments about something I have written, or autism, please contact me at pervasiveparenting@hotmail.com. I will try to answer questions as I have time, and if I find it interesting enough I may touch on it in my column.

Sunday, May 13, 2012

Parents Just Don't Understand

I had a gentleman at church approach me the other day and ask if I was open to ideas about things to help with Konner. I of course said, “Sure I’m up for suggestions”, and he proceeded to talk about things he might be able to pass onto me. This seems harmless, but it can sometimes cause more issues that expected.

This is a loaded question after all. When he asked he was a little hesitant. This is because parents can sometimes take offense to other people telling them how to raise their children. Even if they are only trying to help it can seem like they are just trying to say, “You’re not doing it right, here is what you should do.” This is especially true for a parent of a child with special needs. I mean, how can YOU tell me something about my child. You have no idea what I deal with everyday.

I knew this is not what he was saying, but in the past I have felt this way several times. Anytime someone says, “Have you tried this?” I want to say, “No, I’ve lived under a rock and can’t research anything.” “We’ve only recently (four years ago) had this diagnosed, I haven’t had the time to check out some things.” Or, “Oh, and what is your child’s diagnosis?”

After all, why do they think they know better? What makes them the expert? Do they know all the research that I’ve done over the years? Don’t they know the old saying that once you’ve met one child with autism you’ve met one child with autism? Don’t they know that what could be good for their neighbor’s child, their grandchild, or the child down the road may not be good for all children?

The answer is no. They are just trying to help. This is something we have to continue to remind ourselves.

It’s tough enough to raise a child with a disability, you take everything offensively. What you should do is be nice and say, “Thanks for the advice, I’ll look into it.” This is what I try to do.

Let me share my top five pieces of advice I get most often:

1.       You should take that child out and spank him. This is one that I’ve never heard directly, but I know some that have, and have heard it uttered under the breath of fellow restaurant patrons. This only makes matters worse. Trust me, I have tried.

2.       Have you tried the gluten-free diet? This is a great one. Not that the diet doesn’t work. It has been shown to work with numerous children. The problem is that some kids, like Konner, have a hard enough time eating as it is. There are only certain items we can get him to eat, and for a while we couldn’t even get him to eat his favorites.

3.       Isn’t there a special school where you can take him? Look, I don’t even know where to start with this one. Yes there is. It’s expensive. It’s not very close or logical. It’s better for us to leave him in a mainstream environment. We need to change this way of thinking for society. The list goes on and on with this one.

4.       Have you looked into therapy? Yes, we have so much therapy in a week that we probably couldn’t squeeze anymore in if we wanted to, or could afford to.

5.       Are you sure he’s autistic?  Ok, I don’t get this one as much I you would think, but when he was first diagnosed we had several “experts” tell us, “I don’t think he’s autistic.” Well, the diagnosis from a psychologist who specializes in autism seems to disagree.

6.       Oh, I’m so sorry. While this is not advice it does rank up there. I think the most annoying person to tell me this was the pediatrician when we first found out. I always say, “I’m not asking for sympathy, just understanding.”

7.       You shouldn’t take him to the (store, restaurant, etc.). Great advice if he had a disease that was contagious. I’m sorry that he’s ruining your meal and disturbing your night out. I’m actually using the time in public to help him deal with this so that he isn’t like this for the rest of his life. Thanks for helping him deal with rude people. That will also come in handy later in life.

8.       You should make more time for yourself, or You and your wife should go out and get away. This is also good advice. The tough part of this is finding childcare. We can’t just leave the boys with anyone. It’s tough getting someone who knows how to deal with Konner. The family helps out so much. They are a blessing to say the least, but they have lives too. It’s not as easy as it sounds. And, both boys together is like a death wish for a babysitter.

9.       My child had a meltdown the other day. I’ve expressed this one before, but it is a pet peeve of mine. Let me explain that until you’ve had a child with autism, or other related issue, you’ve never really seen a meltdown. I’m not trying to downplay a good temper tantrum; I’m just saying that an uncontrollable outburst is much more difficult than a child trying to get his/her way. When you’ve looked into a child’s eyes and have seen that glassy, helpless look and know that there is nothing you can do to comfort them you understand the powerless feeling of a meltdown, and the pain that your child is in.

10.   What do you think causes autism? Man, that is a great question. I have several opinions, but I couldn’t tell you for sure. If I knew I’d probably be rich. I know it’s just someone asking an innocent query though.

What we really need to do is just listen to each other. There have been several occasions where those parents, who are just trying to help, have given me some advice that was truly helpful. I’ve even used some information from researching them for my column. The main thing is to do what they are doing and spread the word. This is the true idea behind starting my column, and in a sense I’m just doing what they are trying to do by sharing that information with others.

For those who have given me this advice, or asked these questions, I don’t want to give the wrong impression, although I think at this point it’s going to sound bad either way. Don’t think I don’t appreciate the advice because I truly do. I really take every piece of advice the best way, and research because, as I’ve said before, we have to do everything we can to help our children.

Disclaimer: I am in no way claiming to be an expert. I’m just a father who is trying to learn as much about Autism as I can to help my child. I hope that you all can learn from me, and I from you. I ask anyone who has questions or comments about something I have written, or autism, please contact me at pervasiveparenting@hotmail.com. I will try to answer questions as I have time, and if I find it interesting enough I may touch on it in my column.

Sunday, May 6, 2012

Laughed Until We Cried

Recently babble.com released their Top 30 Autism Spectrum Blogs of 2012. As I began to research some of these I found some interesting sites that I would like to share with you. All of the sites are very informative, but some were more entertaining and insightful.

Let me begin by saying that I didn’t even know what babble.com was until I found this email from one of the many autism organizations I subscribe to. This site in its self is a great source for any parent. The site is listed being “for a new generation of parents.” It includes information for all parents, not just those with special needs children. There are so many links on this page for the whole family that I can’t even begin to describe them. However, if you are looking for advice, self-help, or resources for anything related to parenting you can probably find it here.

As I was looking through the list I realized that there were many differences between these blogs and what I do each week. While I recently started my own blog at http://pervasiveparenting.blogspot.com/, I only use it to chronicle my weekly column and give my followers an easier way to access the articles. The parents who are included in the top 30 list basically open the window to their souls and speak out about everything that is going on in their world. This is a venting session for many of them. The good, bad, and ugly are shown on the pages of their blogs. Of course they are all different, and some are research based, so that’s not completely true.

I’ve always viewed this as more of a way for me to share my research and opinion while mixing in some anecdotes from my life with my son.

That being said, there were several that I liked. In fact, I liked most, but some more than others.

“Adventures in Asperger’s” is a blog developed by a father from Shawnee, Ok. While it has some interesting, and funny stories, it also is nice to see a father’s perspective. It is also nice to have someone from Oklahoma on the list. He shares his point-of-view on his children with special needs.

“Adventures in Extreme Parenting” takes one mom’s obsession with Ryan Gossling and uses it to give a funny twist to a stressful life. I think every mother should check this one out, but every parent would get a kick out of Sunday Stillwell’s sense of humor. Stillwell is also an Oklahoma native hailing from Bartlesville, and leads us on a list of escapades with her sons she dubbed the “Trouble Brothers”.

“Autism Army Mom” has another funny look at motherhood. This woman holds nothing back as she explains the things she finds irritating about the world of autism.

“Autism Daddy” is a blog from a father who has an eight-year-old son with severe/classic autism. There is some great information and advice for all parents, but especially those who have someone on the more severe side of the spectrum.

Along the same lines; “Big Daddy Autism” is a funny look at the world of parenting a child on the spectrum. The author of this one, F. Lewis Stark, adds cartoons and hilarity to help explain his son’s quirks. One of his latest blogs is a synopsis of why his son is like the beloved 80s television character ALF.

“Laughing Through the Tears” is just what is says. It’s another fun look at autism while trying to avoid the frustration of everyday living. I particularly liked the blog about scouting. I don’t necessarily agree with it, but it is a funny look at one family’s view of joining scouts.

There are some blogs that give you an inside view of autism from those who are living with it directly. “Amy’s Tiny Corner of Existence”, “Dude, I’m an Aspie”, “From Inside the Heart”, and “Aspie From Main” are two example of this. They include stories of growing up with autism, and the day-to-day dealings of two adults diagnosed with Asperger’s.

There are also several that include interviews with national authors, doctors, and experts on autism. “Autism Radio UK”, “Autism Women’s Network Podcast”, and “Hope Saves the Day”.

These are only a few blogs on the list. If you would like to check out the list you can go to http://www.babble.com/baby/baby-development/top-autism-blog/.

I did notice that the blogs I enjoyed the most were the funny ones. I think that’s because sometimes if we didn’t laugh we would cry…or scream. We all need an outlet for our frustrations, and everyone wants to know that they are not alone in their problems.

I hope everyone enjoys these.

Disclaimer: I am in no way claiming to be an expert. I’m just a father who is trying to learn as much about Autism as I can to help my child. I hope that you all can learn from me, and I from you. I ask anyone who has questions or comments about something I have written, or autism, please contact me at pervasiveparenting@hotmail.com. I will try to answer questions as I have time, and if I find it interesting enough I may touch on it in my column.