Sanity- See you in September

I was originally going to be writing about our adventure to Toy Story 3 this weekend as my next blog post- I have begun it but was not ‘feeling it’ as far as finishing it up. Noah is in the shower right now, so I have about twenty minutes to write, and actually what I most want to write about is the fact, I have twenty minutes to write.


It is the way of it, School is out and Noah will be challenging me as he is suppose to do, all summer long. Writing for me is not the luxury that is use to be about ten years ago, it is now a necessity because it is what is going to salvage us financially. So sometimes I get a bit tense about trying to complete a deadline or get work done, promote my book, find more work, network etc when I am under constant interruption. I do not attempt to work all day when he is home, but I do think working for one or two hours out of the day is not too much to ask for. Heck, I would skip it all together if it wasn’t a necessity.

Noah will at least be spending some time down Joe’s parent’s house throughout the summer, a few days each month will give me a few days to try to complete the entire months work. But, this is the best it can be, since I cannot afford a baby sitter, and I do not know anyone willing to watch Noah for free.

Noah has come a long way from the head banging, non-verbal, freakazoid that he was a few years ago. He still scripts and self-talks, he still smacks himself when he is upset, beeps and makes peculiar sounds. He still does not understand many social cues, or a lot of concepts, he can be found running or sitting naked in the house because he doesn’t understand ‘shame’. He is impulsive and will often do something while he is asking you, and when it is not something he should be doing, this can be a problem.

However he does ask a lot more questions than he use to, and he even makes more comments about things that aren’t just about stuff he wants. His poor sleep patterns have improved, where he is getting to sleep by 10 instead of after midnight, but 10 is still pretty late when you get up before 6 am, and have no time to yourself or with anyone. Once he is asleep it’s time to sleep if I want to be healthy, but sometimes I work so I can keep the electric on.



I know he could be much worse off, the work we have done is really remarkable, and I am grateful for what we have accomplished and the good people who have come into our lives to help. Summer is bittersweet though, since we can’t really go out and do things it’s just a lot of time trapped in the house, trying to make the best of things, waiting for September when there will be peace in the noise, and quiet back in the house just for those few hours......and he is finishing his shower early (sigh)

Anxiety - You probably think this article is about you :)

One of the biggest challenges with Autism is how anxiety plays a part in the disorder. Anxiety is something we all feel from time to time, it exists to keep us safe. This is why we have a fight or flight response, for if we didn’t we would be eaten by animals. We wouldn’t know when we were in danger, so it is a necessity, but like so many things, too much of it is crippling and affects the person who has it and therefore those around them. The fight or flight response is triggered frequently or even continuously in very bad cases, and the person feels threatened and endanger, even if consciously they do not realize it. It can be presented as a feeling in your stomach, sweating, heart palpations, feelings of dread, feeling like you are having a heart attack or are going to die. It can just be a nagging feeling, and for children they usually do not have the vocabulary to describe any of these feelings so it just “freaks them out”.



People who have too much anxiety are often disagreeable, scared, can be seen as lazy (because the procrastinate on things that cause anxiety), think people are out to get them so they are more argumentative or if they do not have a outgoing personality, they think all of the same things that someone who is argumentative but do not share them with you. In serious cases these people sometimes cannot leave their homes, cannot go to certain events like concerts or to the movies where there are lots of people or too much darkness. They do not drive or avoid it whenever possible. They are afraid to take what would be considered normal risks, they get stuck in their own lives routines, they do not progress forward and often feel they are overwhelmed and chasing their own proverbial tails. All of us have had some of these issues temporarily, but for people with the disorder this is their normal lives, more than it is not. It affects the function of their lives on a day to day basis.

In children it would be seen in more simpler terms since they do not own cars and drive, they do not do the grocery shopping, they are not making huge decisions, but they do go shopping, the do ride in cars, they do make simple decisions, like deciding what they want to do next, or what movie to watch. So it affects their daily lives, and getting a hold of it now is important or their lives will be as mentioned above.

So how do you deal with the anxiety monster that maybe in your home? When it is people you know that you don’t live with it is actually harder. Because of the fine line of being caring and enabling the problem, they will often not see your attempts to help them in the moment, and of course it makes it difficult when you must watch everything you say. But in your own home with your child at least there you are the boss.



Lavender, lavender, lavender!!



Can’t stress the value of it enough. We have sachets of lavender, lavender sticks and incense, candles, and an Airwick nightlight in Noah’s room that constantly releases the lavender. We also use moisturizers, and bath products that are infused with lavender, never underestimate the power of scent!

Kava Kava and Passion flower, both are natural extracts that can be added to teas and drinks that curb over active anxiety, sometimes this is more for those who do not have the disorder. Because people who have anxiety issues are like sponges, they can sense your mood very easily and even if you are not acting out yourself, they can tell when you are nervous. So keeping yourself in check is very important if you want to have some peace. Also having a healthy diet and regular activity is very important to curbing anxiety. The same types of things we all should do so we too are healthy.



Water therapy


Water is charged with negative IONS , much like the beach and the mountains are charged with them. And people who have medical issues are sometimes recommended to live in these types of locations because of the powerful effects of negative ions. Think about the last time you were stressed and then went to the beach. Chances are you felt significantly better once there. Water has this effect also, so taking longer and more frequent baths and showers help reset the system. Water activities, water parks, swimming, and even just playing in the sink a bit are all ways to use water therapy. Nowadays there are indoor pools and water parks so there is help all year round. If it was cheaper, it would be better, but you have to do what you have to do.



Lower your expectations


For children, it may take them longer to transition from one activity to another. This is because of the feeling of what is going to happen rising in them. Just be patient, let it take a bit longer, you have to pick your battles in autism. This is one that teaches the teachers to be more patient. Because NOTHING in life is about getting what we want when we want it, so that applies to every one of us. Not just the children we are teaching. You should have expectations, but do not set them so high that you will be disappointed and therefore your child is now being filled with even more anxiety. They still have bedtimes, chores, and homework, but your expectations of when these things happen needs to be flexible. Then they learn what that means so they can apply it to their lives also.



The sad part about anxiety is that people who suffer from it a lot of time can wind up in lower paying, less glamorous jobs that do not require an education. For getting a higher education is a very difficult task for someone who suffers with anxiety. All of the choices, the work to be done at the same time, the travel, all the new experiences alone can overwhelm the person. And often, these jobs are headed by people who also lack some kind of skill in their life or motivation. And they can exploit the person’s anxiety, because often people who have anxiety feel they are always wrong. A poor manager may yell at an employee in front of customers because this makes them feel better about themselves, because the person they are yelling at isn’t going to stand up for themselves in a way that will matter to the manager. They are embarrassing them, or trying too. This is why many anxiety suffers seem so defensive because they are sick of feeling that way so they lash out on whoever they are close to. It does not make it ok either, if you are being accosted by a friend or family member that has anxiety. You are not their problem; you are not their punching bag. You do not have take it, just tolerate it as much as possible and never ever take it to heart or personally. Because chances are whatever the case maybe that they are taking out on you is off, and not your problem and not anything you really need to hear about. But it is what it is; you are a bigger person by not holding that against them. It doesn’t make it any easier to deal with, but figure that you deserve more breaks and pampering to yourself for being that hero.



The bottom line


If your child is suffering from anxiety it is your place to do something about it, if it is a grown adult then it is their choice to do something about it. Grown adults can fall into two different categories, either they feel they can’t do anything about it, or they truly can’t do anything and they need to be institutionalized. Chances are they just do not believe they can do anything, but the first step is admitting you have a problem, then sick out medical help, support from groups on the internet, read books. talk about it!! If they are so far gone they do not know what a computer is, or how to make a phone call or their name or whether they are on planet earth or not, they need professional round the clock care. Because we all have it, we all have troubles; we all have things we need to improve. We also all have the ability to choose to fix and work on these things. Patience, tolerance, flexibility, and peace within you are the biggest arsenals against anxiety, and a little lavender wouldn’t hurt either.

C.Dagnelli  author of Little Squares with Colors : A Different way to Look at Autism

It's not a cure, but it is the next best thing

When I decided to write a book about Noah and his Autism, I knew it wasn’t going to be a bible about how I cured him. Mainly because he is not cured, and I thought it was more important to feature how we function and accept it. Though it is true, we have improved the situation greatly from where it began we also do not know from one day to the next what kind of day he will have, and therefore what kind of day we all will have. We also do not know what the future holds and what kind of new problems will surface or even old ones we thought were just bad memories. This is why I choose to focus on the present, since only you and your place in it is in your control.

So a blog is a natural step, figures it makes sense to share the day to day, good and bad.

A typical day here involves my husband waking at about 5:40 for work, I usually awake then but do the best I can to squeeze another hour before Noah is up. From the moment I open my door I am greeted by our two golden retrievers Fred and Chewie, usually I hear their tails beating on the walls of the hallway with a steady rhythm once they hear me rouse from bed. Once I open the door the fun begins, Fred is usually holding something in his mouth and whining, Chewie and him are following me quickly anywhere I go…which is almost always the coffee maker where I make my mommy fuel. Next on the line of annoyance is Sami the cat, he is usually whining heartily for more food since he ate it all over night, or the bowl is just dangerously low. The final cog in the machine of annoyance is Noah, who is also very hungry and starving, and somehow has the ability to bounce around even though he just awoke. Most mornings he next gravitates to the computer. Which is where he spends the next hour and half before the bus comes to pick him up for school. Routine is breakfast there, he gets dressed around 8:30, and the bus is to come sometime around 8:45. Then it’s mostly peace and quiet until about 3:20, not completely because the dogs require a lot of attention and Fred really hates the cat across the street, he barks at it even when it is in its own driveway. But regardless, it is a very important part of the day that can be filled how I choose, and gives me much needed space to contemplate and complete the things that need to be done.

Every day with Noah is spent teaching him the things that typical children just understand or get on their own. Some days are much easier than others, and sometimes what can be the most shocking is when you don’t see the meltdown coming. Mostly because he was doing well, almost where you can forget he even has a problem.

There is nothing wrong in my opinion to look for a cure to a problem, condition or disease. But from what I can figure, is while science is out there trying its best to find a cure for Autism, maybe the only thing we can do is adapt to it. Accept the things we cannot change, change the things we can and have the wisdom to know the difference.