(Repost from 11/2010)
I've spoken to many parents with kids in school who have various diagnoses. The question is always about whether or not it is a good idea that they, (school, teachers, friends and family etc.), know what the diagnosis is. That placing a "label" on them can be bad. Some have said their child will use it as a crutch, others have said that their child will be picked on, or it's just none of their business etc. etc. If I were to create a list of pros and cons I am sure to come up with a good list on both sides. I personally feel however that the pros far outweigh the cons.
A label, title or general description, helps people to understand what’s inside (you can't see Autism like a physical birth defect). If my son is having a sensory/regulation meltdown and a non ASD child is as well and they were side by side it would be hard to tell which is which. Unless of course you were a trained doctor or therapist. It’s hurtful to have bystanders give me the "you are a bad parent for not teaching your child how to behave in public" look when the meltdown just happened to occur in a public location. I am very sad to admit that I was once one of those onlookers passing judgment too.
I recall overhearing a parent say under their breath once that "a nice swat on the bottom would take care of that". Calming, redirecting and soothing an ASD child isn't that simple. It’s just not as black and white as that, heck the same is true for typical kiddos. I remember many times walking through the grocery store listening to a child screaming and thinking, take that child home or out of the store or do something about it so they stop. The screaming would just annoy me... now when I hear it I’m not bothered by it in the same way. I first think about what could really be going on and pray that what ever the underlying cause is the parent is able to find the means to make it better. Of course some kiddos ARE being naughty and just need some discipline but I don't assume that anymore, (we all know what it means to assume).
I got stuck at Wegman’s once by the milk coolers. The overhead train was driving by and my son was SO excited! Every time I tried to leave he screamed horribly! My husband called me while I was there and asked what I was doing, I informed him that I was stuck at Wegman’s by the trains, he chuckled. Not to laugh at me, but with me. Many times laughing in a difficult situation makes it easier to cope. He truly understood what I was up against and felt bad for me. After 30 minutes I had to leave. I prayed and prayed all the way to the front, as he screamed, that people weren't thinking the worst of me, but I knew some were. I hoped that on my way out of the parking lot that one of them would happen to be driving behind my car so they could see the Autism Awareness car magnet. That way they would know there was an explanation and much more to this screaming meltdown. I am not saying my sons’ behavior is excusable but some understanding would be nice. I’m sure that all those parents with criticizing eyes have been in my shoes at one time or another and have been mortified too by their childs’ public display.
I know of one parent who pondered the idea of whether or not to tell the school their child had high functioning Autism. They didn't want them to feel different or to be labeled and to use it as a crutch. I feared that the label their child would end up with would sadly be much worse. There are excellent resources for kids in school such as an IEP or 504. They are there to help them. They will not get that added help if the teachers don't know the diagnosis and that will only add to the frustration of the child trying to learn and the faculty trying to teach them. Not to mention the other children. I have been around children recently who are on the spectrum, or are bipolar or have ADHD and I know that what they are doing isn’t always in their control and a level of compassion and patience naturally comes over me as I think about what I am witnessing.
I guess my point is that when you define that medical concern it helps others to understand. A label is knowledge and while that label may have risks it's important that your child gets what they need and is in their best interest and sometimes the label is it. When my son acts out and I know in my heart it is ASD related and someone else is directly involved with us I will share that my son has autism. I am not sharing it to make an excuse; I am sharing it so they understand him and why he is doing what he is doing. I’ve been told that I shouldn't feel obligated to explain him or justify his actions and I totally understand that but I really don't mind sharing when it is appropriate. It helps to have people understand and that in turn helps him too :) This of course is just my personal opinion; I completely understand and respect those who may disagree.
Thursday, November 17, 2011
Wednesday, October 19, 2011
Turning his system ON...
Reposting from 2010
When you want the lights to work, you flip a switch. When you want your car to run you turn the key. When I want to wake up and "function" I drink coffee, A LOT of it please!! Our latest discovery was around 13.5 months. Hunter seemed to function best if you turned his system ON. Hunters PT and my husband were trying repeatedly to get Hunter to take his first steps. He just didn't seem into it. He would more or less just stand there and not really attempt to walk or if he did it was maybe one step. He never really walked along furniture either. His PT decided to try something new; she tossed him in the air and had him land on his feet, not hard enough to hurt him of course but definitely enough to give his feet some input. A few tosses in the air and WOW!! He suddenly started walking to daddy! It was amazing!
Note to self; remove all hard obstacles that he could hit his head on when he falls.
Just to confirm this new phenomenon we tried it again without the jumping and low and behold he didn't walk. Just like many things, Hunter had an "on" switch and it was located on the bottom side of his feet. Who’d of thought!? So jumping on balls, bouncing on the trampoline, jumping on the floor etc. became a very important part of his therapy. And yes that would include the couch when he could sneak a jump in before we stopped him! This needed input remains today. It was really incredible to see how such a small action could make such a HUGE impact on his ability to accomplish a task. When he was jumping we began to notice that he would flap his hands like he was flying. Angels have wings to fly and he was surely an angel. This was when I first began to research and understand the term "stimming”. And the plot thickens…
When you want the lights to work, you flip a switch. When you want your car to run you turn the key. When I want to wake up and "function" I drink coffee, A LOT of it please!! Our latest discovery was around 13.5 months. Hunter seemed to function best if you turned his system ON. Hunters PT and my husband were trying repeatedly to get Hunter to take his first steps. He just didn't seem into it. He would more or less just stand there and not really attempt to walk or if he did it was maybe one step. He never really walked along furniture either. His PT decided to try something new; she tossed him in the air and had him land on his feet, not hard enough to hurt him of course but definitely enough to give his feet some input. A few tosses in the air and WOW!! He suddenly started walking to daddy! It was amazing!
Note to self; remove all hard obstacles that he could hit his head on when he falls.
Just to confirm this new phenomenon we tried it again without the jumping and low and behold he didn't walk. Just like many things, Hunter had an "on" switch and it was located on the bottom side of his feet. Who’d of thought!? So jumping on balls, bouncing on the trampoline, jumping on the floor etc. became a very important part of his therapy. And yes that would include the couch when he could sneak a jump in before we stopped him! This needed input remains today. It was really incredible to see how such a small action could make such a HUGE impact on his ability to accomplish a task. When he was jumping we began to notice that he would flap his hands like he was flying. Angels have wings to fly and he was surely an angel. This was when I first began to research and understand the term "stimming”. And the plot thickens…
What is Stimming?...
Reposting from 2010
Why is stimming associated with Autism or Sensory issues? I’ve searched many sites online for a good description and this seems to sum it up best.
Stimming is short for self-stimulating behavior, sometimes called "stereotypic" behavior. In a person with Autism, stimming often refers to repetitive behaviors like flapping, rocking, spinning, or repeating words and sentences. Although stimming is seen in almost all cases of Autism Spectrum Disorder it is also a behavior many people do. Biting your fingernails, pacing back and forth, twirling your hair, rocking your leg, and tapping your pencil are a few such examples. The list goes on… The difference between autistic people and the general population is that those with Autism will typically choose a stim that isn’t as socially acceptable or it lasts for an unusual amount of time. Twirling your hair or biting your fingers nails may not bother those around you but jumping and flapping over and over probably will, especially if you are older then 5 years of age. Many with Autism will also struggle with their ability to stop or control the stim and this can affect their ability to participate in many daily activities.
Stimming is done for various reasons. To cope with anxiety, fear, anger, and emotions, just to name a few. Like many we know, people on the spectrum may stim to cope with overwhelming sensory stimulation, (too much noise and light, to many people, etc.). Various treatments have been helpful reducing the stimming behavior, medications and therapy for example. I’ve spoken to other parents in the support groups about this and some have also shared that they or their loved one just grew out of it. This makes a lot of sense too since some things in general are harder to cope with when you are younger. As you get older maturity and experience can help you learn skills to cope and this is true for everyone, whether you have Autism or not.
In Hunters case most of his stimming is done to express happiness and excitement, although he will also do it when he is overwelmed or nervous to regulate his system and cope. I am grateful that it is not disruptive or distracting (yet). I say that because his jumping flapping is pretty tolerated right now seeing that he is under 5 years old but when he becomes a teen or adult, his jumping and flapping will be concerning so hopefully he too will outgrow it or have better control of it . When Hunter is scared or upset he stiffens his entire body. He has been known to occasionally hit or tap his own face but that is somewhat rare. When he was younger he rocked and swayed but it isn't seen as much now. If you turned the vacuum on he would spin in circles until you were done. This went on for about a year. Ironically when we purchased a new vacuum he never did it again, the sound it makes now is slightly different then the other vacuum and I can't help but wonder if the noise pitch isn't as stimulating to him now. He expresses now screams and covers his ears, getting very upset by it. He says it's "to loud!" so I know he doesn’t care for the new sound like he did with the other vacuum. I make every effort to vacuum when he isn’t nearby or home since it usually leads to a screaming fit until I have turned it off. No sense in stressing him out if I can avoid it, a few extra dog hairs from Yellow Dog, (aka Jasper-Jax our yellow Lab), on the bottom of my black socks wouldn’t do any harm. And yes, for those of you who are avid General Hospital fans, he IS named after Jax. I’ll save that story for another day…
Why is stimming associated with Autism or Sensory issues? I’ve searched many sites online for a good description and this seems to sum it up best.
Stimming is short for self-stimulating behavior, sometimes called "stereotypic" behavior. In a person with Autism, stimming often refers to repetitive behaviors like flapping, rocking, spinning, or repeating words and sentences. Although stimming is seen in almost all cases of Autism Spectrum Disorder it is also a behavior many people do. Biting your fingernails, pacing back and forth, twirling your hair, rocking your leg, and tapping your pencil are a few such examples. The list goes on… The difference between autistic people and the general population is that those with Autism will typically choose a stim that isn’t as socially acceptable or it lasts for an unusual amount of time. Twirling your hair or biting your fingers nails may not bother those around you but jumping and flapping over and over probably will, especially if you are older then 5 years of age. Many with Autism will also struggle with their ability to stop or control the stim and this can affect their ability to participate in many daily activities.
Stimming is done for various reasons. To cope with anxiety, fear, anger, and emotions, just to name a few. Like many we know, people on the spectrum may stim to cope with overwhelming sensory stimulation, (too much noise and light, to many people, etc.). Various treatments have been helpful reducing the stimming behavior, medications and therapy for example. I’ve spoken to other parents in the support groups about this and some have also shared that they or their loved one just grew out of it. This makes a lot of sense too since some things in general are harder to cope with when you are younger. As you get older maturity and experience can help you learn skills to cope and this is true for everyone, whether you have Autism or not.
In Hunters case most of his stimming is done to express happiness and excitement, although he will also do it when he is overwelmed or nervous to regulate his system and cope. I am grateful that it is not disruptive or distracting (yet). I say that because his jumping flapping is pretty tolerated right now seeing that he is under 5 years old but when he becomes a teen or adult, his jumping and flapping will be concerning so hopefully he too will outgrow it or have better control of it . When Hunter is scared or upset he stiffens his entire body. He has been known to occasionally hit or tap his own face but that is somewhat rare. When he was younger he rocked and swayed but it isn't seen as much now. If you turned the vacuum on he would spin in circles until you were done. This went on for about a year. Ironically when we purchased a new vacuum he never did it again, the sound it makes now is slightly different then the other vacuum and I can't help but wonder if the noise pitch isn't as stimulating to him now. He expresses now screams and covers his ears, getting very upset by it. He says it's "to loud!" so I know he doesn’t care for the new sound like he did with the other vacuum. I make every effort to vacuum when he isn’t nearby or home since it usually leads to a screaming fit until I have turned it off. No sense in stressing him out if I can avoid it, a few extra dog hairs from Yellow Dog, (aka Jasper-Jax our yellow Lab), on the bottom of my black socks wouldn’t do any harm. And yes, for those of you who are avid General Hospital fans, he IS named after Jax. I’ll save that story for another day…
Thursday, August 25, 2011
Realized something today...
Some feel that autistic children can't express love. Some can and some can't (well they can't in the obvious manner but there are other ways in which they can). My little man is so much better at expressing love then he used to be, that said I did realize today that he can give me kisses very easily however I need to ask for them. (Even then it isn't 100% of the time). He doesn't just come to me to express his love with a smooch. He def can show effection with a hug on his own but kisses need to be asked for. It's common for ASD people to struggle with innitiation so this makes sense. Am curious if this is just age appropraite with a typical child or if this is part of and all connected to the struggles of ASD. Think I will ask around to see what others get with their children of the same age. Will update later!
Thursday, August 11, 2011
If he had wings he could fly :)
Flapping is commonly seen with Autism. It's one of Hunters obvious stims :) He may not have the wings to fly but he can absolutely soar!
Monday, June 27, 2011
Always learning, always discovering and always changing...
This statement is true for both Hunter and our family. Autism isn't a "you get what you get" diagnosis. You can't just get the diagnosis, learn and understand the issues and treat the struggles expecting them to be better with therapy because every new day brings new discoveries and experiences and those lead to new challanges. You also can't assume the diagnosis of Autism means skills can't be learned. Not all challanges are bad, many are good and easily overcome and accomplished. Sadly though some are not so easy to treat, deal with or understand, some will test your every ability. There is no such thing as a Learning Curve with Autism, it's Learning Hills and Valleys.
When Hunter goes through a "growth spurt", (I'm not just referencing his physical growth, I am also referring to growth in his speech and language developement or sensory processing tollerance etc etc), we always notice one area tends to suffer as a result of it. For example: If he developes in his expressive language skills we often see him struggle more with motor planning or his stimming will increase or in some cases a new stim will emerge.
About a month or so ago we began to notice that Hunter would take his hands and rub his cheeks over and over and over. He did this to calm down or express excitement. Most often he used one hand but occassionally used both. He might even be seen tapping or gently slapping his own cheek too. Although carried out in slightly different ways each time, it was done for the same purpose. This went on for about 3 weeks or so. I spoke to his therapy teacher about it and we discussed what else may be happening in his developement to bring this on. After reviewing all his recent accomplishments we both concluded that he was showing some progress in both sensory processing and language. This new stim was a coping stim he had created to help himself get through this lastest advancement. I can't recall when exactly he stopped doing it but eventually he did.
You honestly get so used to seeing these stimming behaviors, you really don't notice them as much as an outsider looking in does, esp when they become a part of your daily life.
The lastest stim to emerge is an oral stim. I hope to get a video uploaded showing it since it's hard to describe. It is a cross between a throat clearling and a gasping for air kind of sound. He will repeat it over and over as if he had the hiccups. This one is more pronounced and many have noticed it. When it gets to a point where it becomes disruptive it's time to intervene and we are quickly approaching that point. Not sure what triggered this new stim so I'll have to put some thought to what areas he is progressing in or what may be the reason for it. We are going on about 2 weeks now with this one and I see it happening more and more, not less and less and thats not a good thing.
Many see him and express how wonderful he is doing and how they can't tell he is autistic. I would have to say that one of the biggest misconceptions with Autism and therapy is that people assume that if an issue is treated successfully and they've learned the skill to cope that it is no longer an issue and they kind of "out grow it" or "get over it". I completely agree that Hunter is doing amazingly well, I am SO very proud of how well he is doing!! But also stand firm in my belief that sometimes others inability to see it is because they don't recongize the tiny things he does that clearly reveal it. The problem is still there but not as obvious, it doesn't just go away, he has just learned to cope and over come it, most of the time. He has had several motor planning meltdowns lately and some onlookers have said "oh he is tired" or "he is just being naughty". Well maybe he is, maybe he isn't. Either way, he is trying to cope and this time it isn't working for him and it lead to a melt down. He can most definately be acting out as any toddler would be doing which is typical for his age however his Autism makes adapting, coping and redirecting much harder. When he's not successful, one shouldn't assume he is just misbehaving or in control of his actions and just needs to stop.
Has he been tired at times? Sure but meltdowns aren't just because he was tired or was misbehaving. Having Autism doesn't mean you only have behaviors a typical child doesn't have, it also means that some age appropriate behaviors will be taken to a new level and harder to deal with. It can often be as simple as instead of him taking 30 mintues to calm and be redirected, he may take an hour or more to calm or never be able to redirect and reamin "stuck" on his agenda. And being "stuck" isn't just is choice to be defiant. I used to try to explain it when it occured, now I don't bother. Sometimes my words help, other times they fall on deaf ears so I've found it isnt worth it sometimes. We had this happen a couple weeks ago, I said to my husband as we were crossing in the hall with a crying Hunter, "motor planning melt down", he said "yeah I know". Many around us saw it as one thing, but we knew what it really was. And as long as we knew I guess that's all that really mattered....
I've said a few times recently that had Hunter not gotten his diagnosis by now I would have begun to question some obvious red flags I was seeing.
With therapy a child on the spectrum can learn the skills they need to be successful but there will always be new challanges, good days and bad days. Autism doesn't go away, it is just managed. There will always be the chance in new stims emerging or days they regress and most of the time its ok. You just face them when they occur and do what you can to cope and work through it. It isnt easy but you do it because you HAVE to.
When you meet another parent who has a child on the spectrum you both may find great comfort in sharing experiences, it helps to not feel alone. The unspoken bond you get, that is more healing then any word shared, is the knowing that they GET IT, they UNDERSTAND your pain and frustration. They have walked in shoes like yours and climbed your hills and valleys...
When Hunter goes through a "growth spurt", (I'm not just referencing his physical growth, I am also referring to growth in his speech and language developement or sensory processing tollerance etc etc), we always notice one area tends to suffer as a result of it. For example: If he developes in his expressive language skills we often see him struggle more with motor planning or his stimming will increase or in some cases a new stim will emerge.
About a month or so ago we began to notice that Hunter would take his hands and rub his cheeks over and over and over. He did this to calm down or express excitement. Most often he used one hand but occassionally used both. He might even be seen tapping or gently slapping his own cheek too. Although carried out in slightly different ways each time, it was done for the same purpose. This went on for about 3 weeks or so. I spoke to his therapy teacher about it and we discussed what else may be happening in his developement to bring this on. After reviewing all his recent accomplishments we both concluded that he was showing some progress in both sensory processing and language. This new stim was a coping stim he had created to help himself get through this lastest advancement. I can't recall when exactly he stopped doing it but eventually he did.
You honestly get so used to seeing these stimming behaviors, you really don't notice them as much as an outsider looking in does, esp when they become a part of your daily life.
The lastest stim to emerge is an oral stim. I hope to get a video uploaded showing it since it's hard to describe. It is a cross between a throat clearling and a gasping for air kind of sound. He will repeat it over and over as if he had the hiccups. This one is more pronounced and many have noticed it. When it gets to a point where it becomes disruptive it's time to intervene and we are quickly approaching that point. Not sure what triggered this new stim so I'll have to put some thought to what areas he is progressing in or what may be the reason for it. We are going on about 2 weeks now with this one and I see it happening more and more, not less and less and thats not a good thing.
Many see him and express how wonderful he is doing and how they can't tell he is autistic. I would have to say that one of the biggest misconceptions with Autism and therapy is that people assume that if an issue is treated successfully and they've learned the skill to cope that it is no longer an issue and they kind of "out grow it" or "get over it". I completely agree that Hunter is doing amazingly well, I am SO very proud of how well he is doing!! But also stand firm in my belief that sometimes others inability to see it is because they don't recongize the tiny things he does that clearly reveal it. The problem is still there but not as obvious, it doesn't just go away, he has just learned to cope and over come it, most of the time. He has had several motor planning meltdowns lately and some onlookers have said "oh he is tired" or "he is just being naughty". Well maybe he is, maybe he isn't. Either way, he is trying to cope and this time it isn't working for him and it lead to a melt down. He can most definately be acting out as any toddler would be doing which is typical for his age however his Autism makes adapting, coping and redirecting much harder. When he's not successful, one shouldn't assume he is just misbehaving or in control of his actions and just needs to stop.
Has he been tired at times? Sure but meltdowns aren't just because he was tired or was misbehaving. Having Autism doesn't mean you only have behaviors a typical child doesn't have, it also means that some age appropriate behaviors will be taken to a new level and harder to deal with. It can often be as simple as instead of him taking 30 mintues to calm and be redirected, he may take an hour or more to calm or never be able to redirect and reamin "stuck" on his agenda. And being "stuck" isn't just is choice to be defiant. I used to try to explain it when it occured, now I don't bother. Sometimes my words help, other times they fall on deaf ears so I've found it isnt worth it sometimes. We had this happen a couple weeks ago, I said to my husband as we were crossing in the hall with a crying Hunter, "motor planning melt down", he said "yeah I know". Many around us saw it as one thing, but we knew what it really was. And as long as we knew I guess that's all that really mattered....
I've said a few times recently that had Hunter not gotten his diagnosis by now I would have begun to question some obvious red flags I was seeing.
With therapy a child on the spectrum can learn the skills they need to be successful but there will always be new challanges, good days and bad days. Autism doesn't go away, it is just managed. There will always be the chance in new stims emerging or days they regress and most of the time its ok. You just face them when they occur and do what you can to cope and work through it. It isnt easy but you do it because you HAVE to.
When you meet another parent who has a child on the spectrum you both may find great comfort in sharing experiences, it helps to not feel alone. The unspoken bond you get, that is more healing then any word shared, is the knowing that they GET IT, they UNDERSTAND your pain and frustration. They have walked in shoes like yours and climbed your hills and valleys...
Subscribe to:
Posts (Atom)