Tuesday, March 23, 2010

Make the World a Better Place by Being Thankful

                                Make it work people.” Tim Gun from Project Runway

                                           April Showers Bring May Flowers

Today I just had to vent, because I believe the world is a better place if we choose to see it that way.

One thing I have noticed throughout my life is the fact that no matter what, people will complain. They complain when we have a republican person or persons in office, they complain when it’s the democrats in charge. Proving that no one way is the right way. They complain when we are being taxed, and they complain when we are not receiving more taxes and cut expenses. People complain when it’s hot, or cold, when it’s raining or snowing, and I am waiting for the day someone complains that the sun is shining just a bit too brightly.

Anyone can complain, complaining is easy. All it takes is responding to an initial feeling of discomfort. A reaction to something that may or may not be happening, a fear, a worry and overall an unhealthy way to live. We all have ability to complain, and we all do complain. How often we complain and about what is a personal choice and also based on our own systems of how we respond to stimulus.

Not complaining results from taking a few moments to adjust to the initial discomfort of something, thinking about it and processing those feelings out, looking at perhaps the good side of the complaint. I have a headache, maybe I didn’t drink enough water, now you are acting on your dehydration instead of whining that you have a headache.

                                                        Snow allows for Snow Ball Fights with Those you Love

However if you have tons of headaches, and you have ran the gamut of things that can cause it , you should see a doctor for maybe you have a brain tumor, and that would be something worth complaining about, especially if you have none or crappy insurance. Which could also mean, you will not be able to see your doctor because some people out there think you shouldn’t have insurance because they don’t want it? This is also something to complain about.

Doing something to counteract the things we are complaining about is actually much harder. Because it requires ourselves to actually do something. We might have to think about things that hey, don’t involve us directly! How uncomfortable!

                                        Golden Retrievers Rarely if Ever Complain, and are Awesome Dogs

The only good thing about complaining is the fact that when you’re done, if you spent enough time on it that is, you will find a solution to what ails you. And if you do not, then you probably are not grateful for anything anyone does for you, ever.

I really fail to grasp why so many people wish to not live fully in reality, it is the only thing that is real. I do get it is fun to sometimes escape reality, but that isn’t real, and yes there are many drug on the market that can alter ones reality if they wish. But if you ask anyone who has to take it, they may complain about that too. Point being you may get what you wish for, to find out you don't really want it.

Is it really so hard to find the good in things? Snow sucks to shovel and drive in it, but its fun to play with, it’s pretty; it’s neat to see a pile of it fall in to your back yard from the sky. It’s real! It leads to snow angels, snowboarding, skiing, and hot cocoa; it’s not just shoveling and driving.

People complain a lot of about the weather, and about money, and how they are not satisfied with either. When really we do not control all of either of those things. Sure we can control much of what we consume; we can drive less if possible, but don’t control the price of gas, or milk. You can use less, but you still need so much to function. We can control whether we are going out in the weather, if we are driving or walking. We can put on our heater and our air conditioners, solutions to things that bug us to make it bearable, and the fact is they already exist…so why complain? Complain about something that doesn’t exist so maybe someone will make it, maybe you!

From now on I say when people are complaining, just ask them what they think is the solution, what is the answer. How can they make the sun come out when it’s raining? I want to see them balance the budget! You go find a solution to healthcare woes, you carry that burden of millions on your shoulders. Try that on for a while, maybe you will find you don’t have so much to complain about after all.

         My Son's Autism made being at the Beach Difficult, but he Worked Through it

I realize my rant about complaining is a paradox, and I am not suggesting people never ever vent. But I certainly would not recommend living your life around it, or complaining about things that have yet to happen

Don’t like what I had to say? Don’t waste your breath, I am not listening. I have dogs to play with, gardens to tend, people to love and words to write.

Monday, March 15, 2010

5 Tips for Taking A Child on the Autism Spectrum to Walt Disney World

5 Tips for Taking A Child on the Autism Spectrum to Walt Disney World

                                      Noah the Scientist at the end of the Imagination ride in Epcot

Traveling on vacation with children with special needs can be a very overwhelming idea and task. But with a lot of preparation and research, even with the challenges of Autism a family can have more fun than they could have imagined. This was the case for us this past December, I have composed here my top five tips ( full article including 5 more additional tips coming to a newstand near you)

1-Obtain a mobility pass, this is basically a fast pass, where the person with the disability as well as their party ( up to eight people) do not have to wait in the main line or wait to get the fast pass. Pass holders proceed in the fast pass return and show the Disney employee / cast member the mobility pass which works as a fast pass. This pass is obtained at guest services of the first park visited. Cast members from Disney do not need “proof of disability”, but the child needs to be present. However, bringing a doctor’s note, IEP coversheet with disability or other identification may be needed if the cast member is in training and a manager is not around.

2- Make restaurant reservations months in advance with a Disney agent, or on the Disney vacation site. This is an especially important aspect when dealing with food allergies and specific diets. Disney Chefs are very accommodating and can make almost anything with the proper notice. Reservations can be made six months in advance and should be made as far in advance as possible. The week of the guests trip a phone call should be made to confirm everything. When dining the chef will come out to the table to go over the menu and take requests. This also cuts down on wait time. All locations that serve food have informational packets with the ingredients used in the food sold. Menus are available on line at allears.net

3-Travel at times when the parks have lower attendance. The parks are very over stimulating for everyone. Traveling when the parks are less crowded cuts down on wait times everywhere, crowd noise and unexpected bumping into other people. Disney is typically lighter in attendance the week before Labor day through October 1st, late November through December before winter break, and again the second week of January through the first week of February

4- Be flexible -Traveling with a child on the spectrum is challenging, and flexibility for all involved is key to success. Plan on taking a lot of breaks, and to not be in the park all day. Fortunately the parks are loaded with Play areas and all of the resorts in the area have pools.

5- Be open to positive changes, Disney’s tag line is “a place where dreams come true” and the perspective of many parents that have taken their children there with autism is just that. Parents have reported a variety of improvements in their children after a trip to Disney World such as the child being more engaging , being able to handle waiting a bit longer in lines to even drinking out of cup when previously not being able to. A lot of patience, love and a little pixie dust can go a long way.

Noah and his cousin holding hands, something he never did before this trip. It is a magic kingdom!
Read more about it

Thursday, March 11, 2010

Noah and the Bus

Noah and the Bus

First of all I am overall grateful for the bus that picks Noah up for school every day. It is usually less stressful than the stressful drop off system. Where you are driving your car through a too small parking lot where people are shouting to have the kids jump out of the cars. They need to keep the line moving, but with all the cars and people and they shouting, Noah was stressed every morning, and getting him it the car was a daily problem. The bus is normally fine however, when something snaps in his mind, all bets are off.

Today was one of them mornings; the bus is running late as usual, Noah was exercising with the Wii Fit, and not really eating all of his breakfast when he began to get frustrated with every activity. Because he could not do it, the Wii fit basically is designed to sense your center of balance, and his is always off. So on days that, he is more unbalanced than usual, it is way off, and will result in him not being able to complete the tasks. So this can compound two problems, the problem that he is now frustrated in what he isn’t accomplishing, and the fact that he is unbalanced to begin with, which is the actual cause of his frustration being out of his control.

The unfortunate aspect, in the morning rush, is you don’t see it coming, and frankly a lot of the time you do not see it coming. There can be tells, but on this morning there were few to none, none that I saw at least while getting his bag and lunch packed and getting him ready.

The bus pulls up and is honking, Noah is still trying to complete the obstacle course, and he is stuck on it, he needs to finish it, so telling him you are giving him 20 laptops if he gets on the bus will not matter at this point. So I have to just turn it off. He then starts to run through the house and I have to catch him and get him to the door. He will not put on his jacket, his shoes, or carry his bags. I have to carry all of this and him to the bus; only, it is not possible to carry all of these things at the same time. He takes off and I get his stuff to the bus while he just runs around the yard refusing to go to school.

The aide on the bus can’t help, not allowed to leave the post, why they do not have an additional aide I imagine is due to funding. So this leaves him and me at a standoff in the yard. There is nothing that will get him on the bus, I cannot threaten or bribe. I only can catch, run faster and scoop him up and put him over my shoulder like a sack of potatoes. I do this, and put him on the bus, with no shoes, and no jacket. The jacket fell off in the house, he wants it, but I don’t go get it because all of the kids on the bus are waiting, they have issues too.

It’s a terrible time when it is happening because of the stress, anxiety involved, and the fact there is no patience in the adults involved either. They want Noah on to get to the next stop, they probably deal with this type of stuff all the time, and it is not a daily occurrence here, but it happens enough. But the point being, there is no help, even if you’re asking or pleading, or even just asking for what they think you should do. They have no suggestions, and they do not know what to do.

The most frustrating aspect is there is no currency to work with, in these particular moments. Children generally behave based on consequences of their actions, both good and bad. And when his mind snaps like this, there is no scale, no consequence that is high enough to make him comply. There is nothing that can be taken away or given to make his mind snap out of the fight or flight response. So the only thing that can be done is to physically catch him and put him on the bus. There is no preparation that can help, it is not as if I can decide to take away the exercise or the computer or the games, they are not the problem anyway. And the alternative is to just have him sit and wait for the bus, but having done this in the past, I learned this will only bring more anxiety since the bus does not show up at the same time. And even if it did, there would inevitably be some kid somewhere having a bad day that will delay the bus.

So the only thing I can do is put up with it and accept that some days this will be the case. After it’s over I need to decompress and center myself, and train to just run faster.

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Tuesday, March 9, 2010

Well they say Einstein had a form of Autism, turned out well for him

                                                 The Genius at Work

Noah has been very apt with technology most of his life. He has been capable of setting the timers on the VCR, all of the clocks in the house, and the DVD recorder. Some adults do not even know how to set the timer on their VCR/DVD recorder, Noah just figured it out without being shown. He only carries this ability to reading, nothing else that he has learned has come from learning on his own, or being modeled.

He started messing around with the computer when he was tall enough to see the keyboard and would peer at it in a curious fashion when I would be doing some work at the computer. Little did I know that allowing him to play with the calculator and play on some child websites would lead to him being able to create his own screen savers, install, download and eventually corrupt and dismantle part of the operating system on his own computer.

The disappearance of the main operating system happened yesterday, and the new computer that Joe and I purchased around Xmas (instead of swapping gifts) became worth every cent that I still owe on it. For if he was using my computer without my knowledge, all of my work, my book, and everything that matters that is would be gone. I do have most of my stuff backed up, but that is beside the point. The time it would take, to replace and put the material back in, if it would ever work properly would have been horrible. And some of it would have not been replaceable, because there are new things in my computer that I have not backed up yet. So thanks to the people of Dell helping us finance this computer, life goes on.

Noah’s talent with technology is one of those things that amaze me about him, and also causes us to need tons of money in the bank. For he takes apart and destroys things with his curiosity, one day though I hope if I have been encouraging him properly and his self-esteem stays high he will do something with this talent. Maybe he will be an engineer or an inventor and he can repay us for all of the many things big and small that I have had to replace over the years. And most importantly, I hope that he does some good with his talent, and does not become an evil genius. His self talking about bombs does not really concern me, because that would be silly, but I do hope he doesn’t’ play with his imaginary bombs at school. Schools tend to not be so understanding about these types of things in this day and age.



Monday, March 1, 2010

The True Value of Friendship

The True Value of Friendship

I just read probably the saddest story I have ever read related to Autism. On a very lonely night, in a very fancy hotel room mother Gigi Jordan basically euthanized her child Jude and attempted to do so with herself with prescription medications. Her child was eight, and autistic.

Link to the story if you wish to read it. www.nydailynews.com/news/ny_crime/2010/02/05/2010-02-05_8yearold_boy_slain_in_failed_murdersuicide_at_manhattans_tony_peninsula_hotel.html

I read that she had a lot of money, and many people may resent her for that because we all know how more funds would help us regular folk with our children. But this means nothing to me.

But what does mean something to me is the depth of her pain. That is was so deep and so desperate that this was the choice she chose to make, that it seemed to her to be the only way, the right way. How grateful all of us should feel, for not getting stuck in feeling that.

But we the parents of children with Autism are familiar with her pain, we know how sad it is to love your child but not be able to hug them, or give them kisses. How we talk to them and tell them we love them, but they say nothing back. How we have toys and try to play games with them, but they can’t play with us. That we are prepared to teach them about life, what a rainbow is, why the wind blows, but they never ask about these things. How we look forward to building a snowman and making snow angels, but they wind up screaming. How we want to bake cookies or cakes but they can’t hold a spoon and want nothing to do with the activity. How we want to have birthday parties, vacations, participate in children’s activities, but we discover our child is scared, hiding or screaming. We know the pain of not being able to participate in the life of a typical parent. We know the fear that could surround us if we let it. We know. Typical parents may have a difficult time fathoming this level of disappointment and fear. For we have to fear things such as, will my child accidently stab me? We have to fear will they set the house on fire? Will they escape in the night and I won’t be able to find them? Because these things can more easily happen with our kids.

And though I feel for her, and her desperation, I am angry. Not just at her for not taking the time to fully “see herself” but at her family and her friends. These people did not see what her pain was hiding from herself. What kind of self-absorbed people did she associate with? Did she not have a single person say to her “hey your being kind of crazy, what’s going on?” Was there no one, who questioned her choices or her attitude? Because you do not wake up one day and decide to do something like this. This comes after years of it eating at you. And everyone one of us likely knows the disappointment in family and friends that do not support or understand your situation, every one of us has lost friends because of the new change in lifestyle of having a child with special needs. But what we really learned is who our friends were to begin with. Those are the ones we still have; they support and love us and our troubled child. They bring us food, do our hair, babysit our pets so we can go out, they send us cards or give us silly gifts to cheer us up. They are the ones that come over and send you out for an hour so you can breathe; their love is what keeps us from sinking too low for too long.

We all know that having more funds would make the road less bumpy and can provide more opportunity. It can provide for therapists, doctors, treatments, the ability to take care of yourself, provide a healthier diet, being able to do more things because you can bring a caregiver or behaviorist with you. But money will not bring you understanding, compassion or true friendship. It will not bring you an understanding of self either.

Anyone of us with a child with special needs can as easily fall into this trap that she did. We have felt that desperation, but we don’t get stuck there. We are familiar with the ugliness of this desperation and isolation. Though I may have never personally wished my son dead, I have been frustrated enough to want to put him in an institution. But once the frustration passed moments later, I no longer felt that way. But I wasn’t stuck there. For getting stuck there can lead to suicide and killing others. For if people weren’t stuck on the idea, well than it wouldn’t have happened. And getting stuck on something is something we should all understand, because our kids get stuck on things all the time. And we work diligently to unstick them, so they can move on and not are there in the throws of being frustrated.

I am sad for their family today, they have lost so much because no one would listen, including themselves. It is too high a price to have to pay. That is truly one of the saddest things in the world, because it isn’t what happens to us that that matters, it’s what we do after they happen. We can stew on all we have lost with Autism or any illness our disease our children may have. We can focus on those things and one day we may feel so desperate as to destroy our life and the life of the one thing we hold most precious. This is why it’s very important to make the choice to surround yourself with positive people and those that truly love you. This is why it is most important to believe and take care of yourself. There is a saying that the lord only gives you what you can handle, and it is this concept that matters. Not whether you believe in one god over another or any god for that matter. But the idea that you are only given what you can handle, and sometimes we are given challenges in life. And because we are, we are blessed, because this means we are moving forward if we choose to take it. But that only works if you believe it.

This is why I won’t give in to it or stay stuck in any dark place. I have felt the pain, but I walk it off.

I steal hugs and kisses whenever possible, maybe it’s not as much as I should receive, but I have two very very affectionate dogs that more than make up for it. I have learned how resourceful I am, how strong I am, how much I can tolerate, how much I can juggle, how little things do not bother me. I am more organized and prepared than ever in my life. I never have clutter around. My child helps me keep my house clean and neat because that is how it has to be to function. I don’t have to worry about spending money I don’t have on overly elaborate parties or for other kid’s parties since my child does not have that many friends. (yet) And though I love making snowman and snow angels, snow is really cold, and really I am just fine with only being out in it for 20 minutes. All of this, and all that I have experienced with this allows me to not care about things that other people may rely on to make themselves feel whole and valuable. For I have a child with Autism, I look for more answers, I think outside the box and I never give up. Not because I am a saint, or superwoman, it’s just in the job description. If only Gigi could have told herself that, or had someone tell it to her. I am grateful for the very solid friendships that I am so blessed to have, which I know I had to work at keeping also. If you’re not a good friend, well you’re not going to have any good friends. Being a millionaire does not guaranty this either. This starts with the most important friendship we have, the one with ourselves.

C. Dagnelli Author of Little Squares with Colors: A Different way to look at Autism