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
www.crustyproductions.books.officelive.com
www.christinadagnelli.blogspot.com
Monday, March 1, 2010
Friday, February 26, 2010
Part three - Communication Build Up
Communication Build Up
The number one challenge with children with Autism is communication. Anxiety and Sensory issues are a huge component also, but communication still reigns as the number one problem, because without it, the other two are bigger problems because now the child on top of it all cannot express to you why they are behaving the way that they are.
Communication problems are in more than one area. There is the fact that many children are not verbal, where they have few or no words, or they have a very limited vocabulary. Only children with Aspergers have a large vocabulary, sometimes even greater than typical children. But the communication issue does not stop just at the lack of words. It also is the inability to read body language, facial expressions, and the concept of personal space, the little nuances we use to convey meaning, and the biggest one that the world exists beyond ourselves.
Verbal ability is the easier one to teach, because you can show pictures of objects and activities and drill these ideas and pictures into a child’s head. This is where ABA (Applied Behavior Analysis) succeeds; it has been proven to dramatically increase a child’s vocabulary. We used it for 2 years and it greatly increased Noah’s vocabulary of less than 20 words, to that of a typical 5 year-old ( when he was 6) He still struggles in this area, because the English language does not always make literal sense.
Excerpt from Little Squares with Colors: a Different way to look at Autism
I have explained what a figure of speech is, but it seems to go in one ear and out the other. So I find it amusing most of the time. When I get a song stuck in my head Noah wants to see it, and now he offers to help rinse it out. Now that he has more language he can expand this a bit. Saying that it’s a disc in my head and we need water.
I first notice the literal thinking, when I teach him to wash his own hair.
“Ok, now you have the shampoo on your head, so put your hands on your head”
Noah does this while standing in the shower.
“Okay, now move your arms back and forth.”
He drops his arms to his side and swings them back and forth. After this I am more careful when explaining things, than I already was. I am especially concerned with explaining what would happen if he got shampoo in his eyes. I think it’s best to leave the burning part out, because I have the image of him seeing flames shooting from his eyes. And if he thought that, he would never use shampoo again.
I still have to watch the figures of speech; I really am surprised how many there are: Daddy’s on a roll! I am so hungry I could eat a horse!
Sometimes it’s best to not say anything.
The literal thinking is a later obstacle, what comes first is teaching a child the words for the things in their environment, and teaching them about their emotions, which is a very difficult task.
A Picture is worth a thousand words
Pictures are your friend in autism if your child is visual, which a great many of them are. Take pictures of everything your child interacts with on a regular basis, including the people in your life. Pictures are used to teach what an apple is, and who Aunt Jenny is or Uncle Mark. Noah every day had to go through a pile of cards with everyone pictures on it to memorize their faces with their name. Either by stating the name of the person in the picture, or by being told a name and he would have to touch the corresponding photo. Pictures can also be sequenced to teach an activity such as how to wash your hands. We also used pictures to teach Noah how to get ready for bed. The pictures were taken of his bathroom, the bathtub, sink, toilet, pictures of him washing his hands, drying them, turning off the TV, reading a story, and being tucked in. He would remove each picture after we did the task and placed in a bin at the bottom of the board. Then I would replace them the next day, you can do this for just about everything. And you do it, until one day, your child starts to do the tasks by your verbal prompt as opposed to the picture. I remember when I finally could but bedtime, to bed, such a feeling of satisfaction. Of course getting him to STAY in bed was a whole other issue, and I will save that for a different entry.
Emotions were harder to teach, he memorized the words from looking at the same pictures of people smiling, or looking angry, even bored. We had pictures of him also looking angry, bored, tired, happy, sad, and he did memorize the words, but I couldn’t get him to get the emotions. Not until I videoed them, I learned he was able to absorb the emotions from TV from one day watching the movie Homeward Bound. Near the end of the film when the pets are reunited after being separated its very overwhelming with joy and tears, and Noah, the man of few words started to cry. But it gave me the idea to make videos of him for him to watch. So we made lots of videos of Noah, and he learned to connect the feeling the video gave him, with being there also.
Patience is a virtue, and good teachers are saints
Teaching communication to children on the spectrum though goes in tandem with understanding the other two factors, anxiety and sensory issues. This is why I wrote about them in this blog first, because you have to understand these issues will influence how successful any learning will be. The best success we have had was when we understood this fact, utilizing small sessions with in the session. Letting him work with drills for short periods, and when he seemed fidgety, restless, needing to stim or just getting very frustrated it was time for a sensory break. And after an hour or so of work, a period of quiet alone time for him, which gave time for myself and the therapist to go over what we just accomplished.
Unfortunately science and therapists have not yet come up with a proven strategy to teach “theory of mind” (the ability to know things happen outside of your mind) or all of the smaller subtitles that come with communications, those things we take for granted. When we are tired and maybe are not interested in doing something, or when we are excited and want someone to share in that joy, these types of subtitles just elude autistics, and behavior therapy can be used to help control the more extreme emotions of the child, and the frustrations. But so far, learning personal space and concepts like it are more trained into the child as opposed to where they come naturally. And because there are so many, and we are all different, it is a nearly impossible task to expect people on the spectrum to “get something” that does not come naturally to them. It is no different than expecting a diabetic to just make their own insulin. But for now, there are no injections that can be given to a person that lacks this communication skill. There are dietary interventions that do help with this area and I will be covering them in the near future.
All you can do is your best, be tolerant, patient, and do not take anything personally. We all can work on our communication skills, children without them teach us how important our job is to teach them, and also how to better communicate with others. They also teach others who do naturally have the ability to communicate how fortunate they are, and maybe that will help encourage more bravery in those that lack it.
C. Dagnelli Author of Little Squares with Colors: A Different way to look at Autism
http://www.crustyproductions.books.officelive.com/
Follow Blog – http://www.christinadagnelli.blogspot.com/
The number one challenge with children with Autism is communication. Anxiety and Sensory issues are a huge component also, but communication still reigns as the number one problem, because without it, the other two are bigger problems because now the child on top of it all cannot express to you why they are behaving the way that they are.
Communication problems are in more than one area. There is the fact that many children are not verbal, where they have few or no words, or they have a very limited vocabulary. Only children with Aspergers have a large vocabulary, sometimes even greater than typical children. But the communication issue does not stop just at the lack of words. It also is the inability to read body language, facial expressions, and the concept of personal space, the little nuances we use to convey meaning, and the biggest one that the world exists beyond ourselves.
Verbal ability is the easier one to teach, because you can show pictures of objects and activities and drill these ideas and pictures into a child’s head. This is where ABA (Applied Behavior Analysis) succeeds; it has been proven to dramatically increase a child’s vocabulary. We used it for 2 years and it greatly increased Noah’s vocabulary of less than 20 words, to that of a typical 5 year-old ( when he was 6) He still struggles in this area, because the English language does not always make literal sense.
Excerpt from Little Squares with Colors: a Different way to look at Autism
I have explained what a figure of speech is, but it seems to go in one ear and out the other. So I find it amusing most of the time. When I get a song stuck in my head Noah wants to see it, and now he offers to help rinse it out. Now that he has more language he can expand this a bit. Saying that it’s a disc in my head and we need water.
I first notice the literal thinking, when I teach him to wash his own hair.
“Ok, now you have the shampoo on your head, so put your hands on your head”
Noah does this while standing in the shower.
“Okay, now move your arms back and forth.”
He drops his arms to his side and swings them back and forth. After this I am more careful when explaining things, than I already was. I am especially concerned with explaining what would happen if he got shampoo in his eyes. I think it’s best to leave the burning part out, because I have the image of him seeing flames shooting from his eyes. And if he thought that, he would never use shampoo again.
I still have to watch the figures of speech; I really am surprised how many there are: Daddy’s on a roll! I am so hungry I could eat a horse!
Sometimes it’s best to not say anything.
The literal thinking is a later obstacle, what comes first is teaching a child the words for the things in their environment, and teaching them about their emotions, which is a very difficult task.
A Picture is worth a thousand words
Pictures are your friend in autism if your child is visual, which a great many of them are. Take pictures of everything your child interacts with on a regular basis, including the people in your life. Pictures are used to teach what an apple is, and who Aunt Jenny is or Uncle Mark. Noah every day had to go through a pile of cards with everyone pictures on it to memorize their faces with their name. Either by stating the name of the person in the picture, or by being told a name and he would have to touch the corresponding photo. Pictures can also be sequenced to teach an activity such as how to wash your hands. We also used pictures to teach Noah how to get ready for bed. The pictures were taken of his bathroom, the bathtub, sink, toilet, pictures of him washing his hands, drying them, turning off the TV, reading a story, and being tucked in. He would remove each picture after we did the task and placed in a bin at the bottom of the board. Then I would replace them the next day, you can do this for just about everything. And you do it, until one day, your child starts to do the tasks by your verbal prompt as opposed to the picture. I remember when I finally could but bedtime, to bed, such a feeling of satisfaction. Of course getting him to STAY in bed was a whole other issue, and I will save that for a different entry.
Emotions were harder to teach, he memorized the words from looking at the same pictures of people smiling, or looking angry, even bored. We had pictures of him also looking angry, bored, tired, happy, sad, and he did memorize the words, but I couldn’t get him to get the emotions. Not until I videoed them, I learned he was able to absorb the emotions from TV from one day watching the movie Homeward Bound. Near the end of the film when the pets are reunited after being separated its very overwhelming with joy and tears, and Noah, the man of few words started to cry. But it gave me the idea to make videos of him for him to watch. So we made lots of videos of Noah, and he learned to connect the feeling the video gave him, with being there also.
Patience is a virtue, and good teachers are saints
Teaching communication to children on the spectrum though goes in tandem with understanding the other two factors, anxiety and sensory issues. This is why I wrote about them in this blog first, because you have to understand these issues will influence how successful any learning will be. The best success we have had was when we understood this fact, utilizing small sessions with in the session. Letting him work with drills for short periods, and when he seemed fidgety, restless, needing to stim or just getting very frustrated it was time for a sensory break. And after an hour or so of work, a period of quiet alone time for him, which gave time for myself and the therapist to go over what we just accomplished.
Unfortunately science and therapists have not yet come up with a proven strategy to teach “theory of mind” (the ability to know things happen outside of your mind) or all of the smaller subtitles that come with communications, those things we take for granted. When we are tired and maybe are not interested in doing something, or when we are excited and want someone to share in that joy, these types of subtitles just elude autistics, and behavior therapy can be used to help control the more extreme emotions of the child, and the frustrations. But so far, learning personal space and concepts like it are more trained into the child as opposed to where they come naturally. And because there are so many, and we are all different, it is a nearly impossible task to expect people on the spectrum to “get something” that does not come naturally to them. It is no different than expecting a diabetic to just make their own insulin. But for now, there are no injections that can be given to a person that lacks this communication skill. There are dietary interventions that do help with this area and I will be covering them in the near future.
All you can do is your best, be tolerant, patient, and do not take anything personally. We all can work on our communication skills, children without them teach us how important our job is to teach them, and also how to better communicate with others. They also teach others who do naturally have the ability to communicate how fortunate they are, and maybe that will help encourage more bravery in those that lack it.
C. Dagnelli Author of Little Squares with Colors: A Different way to look at Autism
http://www.crustyproductions.books.officelive.com/
Follow Blog – http://www.christinadagnelli.blogspot.com/
Tuesday, February 23, 2010
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
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
Friday, February 19, 2010
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.
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