And yet we are blessed

This is a really tough blog to write. I'm going to explain something I haven't yet because of several reasons. As I explain this, though, I want you to understand how blessed we are because of the assistance we have had and the people who are working with my son now. Yes, we are blessed in spite of the situation.

I used to be able to order and give out free stuff in my Galaxy Zento biz. I can't now. I've told people that we are bent over a barrel and there have been some medical issues with myself and my dear wife, but I haven't explained this part of the story. Why? Because I'm not looking to bitch or sob. But I have contained this long enough that I really can't just stay shut down over it any more. I need to talk. There are names I still cannot say, so forgive that and just bear with me.

As many of you know I have a super 13 year old son with autism. He's a great kid and we are so proud of him every day. He's gone through so much. Right now he's in a "private school" that specializes in his educational needs. The reason our family has no money for any extras (and barely enough for some essentials) is that we are paying 298 dollars a month to put him through school.

It could be worse, but a wonderful, wonderful company fronted half the years tuition. So why don't we have him in public school? This is the hard part. The part where I can't name names. But it's like this; about two years ago, my son had to spend a few months in a hospital for the heavy stress related injuries caused by the school system. Without going into a ton of details, it's as simple as that.

I've been asked why I can't afford to buy copies of my own game or pay for pro artists etc, well that's why. And frankly, my son is just a little more important than how they think I should try to start my business. But that's just a side frustration. I digress.

Sue them? No. Believe it or not, that would actually hurt quite a few people. I spoke to a very good attorney who won a case for another family against the same system over 5 years ago. That system owes said family over a hundred grand and has yet to pay a single penny. Not only that, but the system will retaliate and drag my son's current school under a microscope to "see if he's getting proper education there". That would hurt every student there that this wonderful school has helped. So, the way we are doing this is the best way we possibly can.

We live by circulating credit cards, not having cable, and keeping it at the bare essentials. And it's totally worth it. My son has been helped so very much, that I love that place. I would rather be house poor than see them hurt him. Because they told me, to my face, that middle school here would not follow his IEP and they had no fear in telling me that because there is just no damned enforcement here. And my family is not the only special needs family they have done this with. They scare families away so they don't have to deal with them.

So, for you IEP warriors out there. PLEASE don't ask who they are. I won't tell you. If you find out, please don't contact them, you will hurt us and countless other families. I just needed to talk it out. I know many of you will understand.

What saddens me is how much some people don't understand (like the elitists of Kickstarter and board games who ran me off). Finding out only that I'm disabled was enough for them to say I was full of excuses and to go away. God only knows what they'd say about my son. Again, side frustration. Sorry.

But we never give up. I fight to show my son that it's always worth it to keep going. I'm so proud of his accomplishments and overcoming. And before anyone asks. We never told him to blame his school system even though he's fearful of certain people if he sees them in public. He sees his time at the hospital as something he needed to help aim in the right direction and learn important life skills. He does not consider himself a victim, rather a growing boy with his own difficulties. Now we just have to figure out what we are doing about High School once we have him caught up, because if we can't move, he will be back in that system again. Not sure what we'll do about that.

Moving makes changes

Yes, I'm moving. By June 15 I should be in Louisiana. It's been nice here in Wisconsin and I've met some good people. One of those people has become very important to my son and I. Important enough to move with her and start a new chapter in life.

Moving is change. Change is hard on the autistic most times. So it makes sense that you prepare your child for the change as much in advance as possible. I've shown my son all the positives of the move and referred to it as "our next big adventure". Those words work well for my little hero "adventurer". He relates well with those words. If it's an adventure, he's all for it.

Currently he's excited for the big move and is showing interest in how to pack things and wants to be helpful. I'm sure, once we get on the road in the big truck (that he's also excited about) he'll discover boredom and not be quite so excited. Well, that's the reality of moving, especially when you move about 900 miles. Our destination, the city of Monroe.

So, there will be an interruption of blogs at that time, and I will certainly update on our adventure and how the move has gone. What worked for my kiddo won't necessarily work for yours. You have to use the things that your child associates with. Favorite stores? Favorite kind of parks? What is in the new area that you know your child loves and is connected to? Well, I have to do some house cleaning, so enjoy your warmer days and we'll update soon.

Our holidays 2010

So, how was your holiday? Did you remember or have a way for your spectrum child to take a break or de-stress? Did you have to use any of your safeguards? Well, our holiday season has been quite an adventure.

We took a journey in an 18 hour drive to Louisiana. This made for bored 8 year old in the back seat for a very long time. The drive down there from Wisconsin was done all in one shot. Yes we stopped for breaks and gas (ha ha). To go on this trip and when I have done others, an activity center is available for my son. It involves a small bin of his favorite toys, his DS game console, coloring books, crayons, and anything else that may help distract him. Distractions did not work so well on the trip to LA. So, needless to say, it was a hard trip. But let me tell you just a little more.

We left in the middle of heavy snow and ten minutes into our journey we were in a ditch. We needed a tow truck to winch us out and that certainly made for an interesting start and an agitated child who went into anxiety land. When I travel as a passenger I have to take dramamine. It's part of my sensory issues. Well, I forgot and got nice and nauseated on the trip in the first hour after being back on the road. But I took my med and felt better in another hour. After that, except for sore legs and buttocks from driving, and a whining child, things went fine. The weather cleared and all went smoothly. We got in to our destination around 9 pm and crashed thankfully on an air mattress.

Our stay was great. My son never really needed any retreat and enjoyed playing with a boy close to his age. He also spent some quality time with dogs. My son is afraid of dogs but he got to meet dogs that were genuinely nice and did him a great deal of good. This includes a total of five dogs in two different homes. One of them was one of the sweetest German Shepherds you could hope to meet. My son got to play in a huge back yard, jump on a trampoline, and just have an all out good time. We also tried new foods, like a four meat gumbo (chicken, shrimp, crawfish, and sausage). Our holiday meal was a feast of great proportions and of excellent selections. I mustn't forget to mention that we also took a trip to the zoo in Monroe. Most enjoyable.

Christmas morning was exciting and my son was beside himself with his gifts. New games for his DS that actually worked on keeping him distracted on the drive home. He had a couple of fits, but no where near where my own anxieties dwelled.

We broke up the drive home into two days and even that still had us exhausted. It was easier on kiddo though, and us too. His DS kept him distracted along with an IPOD that my girlfriend put some apps on for him. Mostly the DS though.

I'm not saying my son's behavior was perfect though. He was way out of routine and that caused some erratic behaviors and a tough bedtime and one tough morning. But, like it said, it was better than I thought. I hope that all your holidays turned out wonderful. Best of luck as we head into a new year!

Autism and holiday gatherings

I know of many families who don't go to holiday gatherings anymore because of their child's reactions or unsupportive family reactions that are involved. For some of these situations it's understandable. But if you have a high functioning child you may be depriving them of important social practice. That being said, it's that time of the year to consider all the things we need to do for our kids to survive the social dramas of the holidays.

Holiday gatherings fill a place with extra sounds and smells that can trigger the more sensitive of our kids. There have been times when my son just wanted everyone to go home because he couldn't take all the mixed voices anymore. The extra mix of smells from varieties of food cooking can be a trigger too. While the typical person finds all the odors a delight, too many can overload an autistic.

Can your child handled a holiday gathering? How well does he or she handle crowds? How big of a crowd? How loud? Compare your child's sensitivities that you already know about to what you know of your family's gatherings (if you haven't tried already) and you can gauge their reactions.

How do you handle the hard spots? How do you handled the possibility of meltdowns from sensory overload? As a matter of practice, remember to plan an escape route to a designated "quiet spot" where your child can feel comfortable and relax for a bit. A place to hide from the sensory input. If you are going to another persons home, you should discuss this option with them and see if they can work with you. If you have unsupportive family, this may be difficult. Understanding that, your child's welfare is more important than any holiday gathering. You should take no shame in having to leave early or just not going.

If you don't go, be sure to share some holiday experience with your child at home. Cook things that have some of those smells and get them involved in your own home festivities.

Another way to help with possible problems is to have things there that are positive distractions. Things that your child loves in the sensory realm. For example, maybe they just love the crinkling of wrapping paper in their hands? Let them play with it. It's better than a meltdown any day and comforts them. For that matter, some are best left with their special diet and what they prefer for the day rather than forcing them to what you know they may not eat. This will keep the peace for your get together and everyone will be happier for it. Try not to forsake any routines so you can help them say as balanced as possible.

What's most important is that you know your child and know what affects them and how. You are the one who can help them the best. Be their holiday advocate and you can find ways to get through the holidays easier.

With that, I wish all of you a very happy holiday with many happy tidings involved.

Do you like heroes and online reading? Be sure to check out Galaxy Zento

Honoring the Fallen

Well, on July 2nd I went to my father's funeral in New York. Ever since then my head has been filled with concepts and I've been contemplating. First of all, the Wisconsin Patriot Guard took care of my expenses for the trip, thank and bless them very much. I also understand that some of other chapters road with my Uncle part of the way to bring the Urn from Kansas to New York.

My father's last wish was for one last long ride on a motorcycle. The man had Harley Davidson in his veins and he was a true biker of true bikers. Better yet, since he had the mind of an engineer combined with a Vietnam vet of Special Forces, he always had something cool someone could do to make their bike just a tiny bit better. Or whole lot better depending on who you ask. Well, my Uncle gave him his wish and a funeral procession to end all.

In the carrying bag for my father's urn were five flags for the service, or was it four? In any case, somewhere a long the trip, he switched the flags so that each one spent part of the trip around the urn. Awesome in my book and very thoughtful.

At the service in Woodlawn Cemetary in Elmira, New York; the Patriot Guard came in a force of at least dozen and circled around us holding flags. They also rode in with us and it was quite a sight. My Uncle made all the arrangements and I don't think he could have done it any better. It was a great service that honored my father very well.

I had to leave for home after the service. I couldn't stay and I had a lot on my mind. I learned from my sister that my aunt also passed away within around 2 months of my father. I didn't know her as well as my Uncle per se but I gave to the contemplations that carried me through a twelve hour drive. Yep, I turned grief into energy and it took me all the way through.

This has to have been hard for my Grandparents and Uncle. It's a hard hit to the family no matter what, but still. They meant so much to so many. I have to say, after seeing it happen a few times over, I hope I don't outlive my children. I've already outlived a god-child. That's enough for me or so I pray.