Need I say more?? :) lol...
Hunter fell in love with Thomas at a very young age, can't remember when he didn't like Thomas actually, lol. It’s a clear obsession of his, most on the spectrum have one thing they obsess about. If we walk through Toys R Us he will not acknowledge a single toy unless it is a train. There are benefits to this. We went to a huge neighborhood garage sale when he was about a year old and same thing happened. He was silent as he strolled along accept when he saw a Thomas train, and there is NO leaving until you give it to him and buy it! When shopping we’ve since learned to carefully scan the isle ahead of us to be sure there is no Thomas seen.
We've heard from many that ASD children often have a special gift in something. We've known for quite sometime that Hunters gift is the ability to scan quickly an area we are in or passing by. I recall very vividly the day my husband and I walked through a toiletry isle at the grocery store. He was maybe 1.5 years old. We were passing through and walking fairly quickly, even I would have had trouble reading or picking out items on the shelf if I had been looking for something. All of a sudden he screams "Thomas!" We stopped and looked and looked and looked some more. We couldn't find it. We spent several minutes trying to find it and low and behold back a few feet there it was! It was a small child size tooth paste tube. Are ya kidding me?? So small that it was really hard to see, ESPECIALLY on the move! He has amazed us many times with his ability to do this.
Often times my pre-scanning fails I’m obviously not as good at it as he is, just when I think the coast was clear, there is a Thomas the Train item….
DAMN!…
My husband and I were beside ourselves one day as we were walking through Home Depot one time. (Hunter is always in a shopping cart so he also has to turn his head as he looks around). Same thing, we changed isles and he cried and cried. We couldn't figure out what set him off so we went back to the isle we had been in, "THOMAS!" He yells... We were both baffled; why on earth would there be a Thomas item at Home Depot? Sure enough there was. It was a Thomas the Train play mat in the flooring department. Good Grief!
While Hunter does play with other items but they are on a much smaller scale. Thomas is the main caboose, no pun intended. Other toys are pretty mute by comparison. When he was an infant we began to call him our Choocha man. This was before we knew he loved Thomas and long before his diagnosis, pretty appropriate huh? That nick name has SO much more meaning to us now and it totally fits him!
We've found in Hunters case that the link described by professionals between Autism and Thomas truly describes his attachment to the trains. He loves the colors the faces, the stories etc. He has actually learned some of his colors because of them. He knows Thomas is Blue, Molly Yellow, Percy is Green and James is Red. Trains are also very predictable and all lined up and autistic children/people find this to be very calming.
Friday, November 12, 2010
Thursday, November 11, 2010
Motor Planning Disorder...
Motor planning is a person’s ability to plan out and execute a task that is not habitual.
I am not sure of the exact medical or professional description but that sums it up for us. I had never heard this term before but soon it became a part of our everyday vocabulary. This was one of Hunters biggest struggles early on and his team was quick to pick up on it. They would point it out to us and explain what was happening every time they saw it. Educating us while helping him was important. In Hunters case a Motor Planning struggle is when he couldn’t do a task he already knew or couldn’t apply what he learned in one task to another similar situation. Having something on his mind and knowing what he wants or needs to do but suddenly being unable to do it, (this also lead to many of his blank stares).
Hunter was approximately 9 months old when we first heard this term from his PT. He was able to sit up on his own for the most part by this age. If he was sitting up and flopped over while on the living room floor he’d just roll over onto his belly. The expression on his face was priceless! As if to ask “How did I get here?” One afternoon I had placed him in his crib upstairs to take a nap, after a short bit he was crying and clearly frustrated. I ran to his room to see what had happened, fearing the worst by the tone of his scream, and found him sitting up in his crib and leaning against the side rails. He wanted to lay down but couldn't do it or motor plan how to do it and he became very upset. He knew how to do this down stairs but the change in location confused him and made it impossible for him to carry out. It broke my heart terribly to see him so upset, I can’t imagine the emotional pain he was enduring knowing he wanted to do something he clearly knew but unable to accomplish it.
Another example of this commonly seen with him around this age was climbing over an object. It took some time for Hunter to be able to crawl over my legs or his PT’s legs. We spent many sessions working on this. Eventually he mastered it and could crawl over our legs with ease. His PT soon began introducing other objects for him to crawl over and it was noticed right away that he could no longer do it. His frustration was intensified by the fact that was also unable to motor plan how to get around it. He would be frozen in the moment. No sound, no attempt to do it another way… nothing. I would just look at my son, quietly starring at him. Inside my head I would be saying over and over what he needed to do, as if telepathically I could help him, it never worked. Sometimes it was so difficult for him you could look into his eyes you could see him crying inside yet there was no sound coming from him, he was just silent.
We saw this motor planning delay in various things he did. He could crawl down on one stair in the house but not be able to do another stair at a different location. Or individual skills he has mastered put into a sequence also made it impossible for him to do. I also describe this as trouble multitasking, I’ve found that family and friends would understand it better when shared that way. To this day Hunter struggles with motor planning although he is getting much better. I should add that his success in motor planning is also very dependent on his system being regulated, (I’ll explain that later).
We have learned in some situations to provide visual models by showing him the motor skill to refresh his mind so he can do it. We’d sometimes do it ourselves first so he could watch or provide him with a photo to look at.
The helpless feeling inside me tears me up when I see him get stuck. I can see the wheels churning inside as he tries to figure it out and the frustration on his face becomes more obvious. This can be mistaken for regression but it isn't. He is just stuck in the moment and motor planning. He didn't loose the skill; he just couldn't do it at the time.
I am not sure of the exact medical or professional description but that sums it up for us. I had never heard this term before but soon it became a part of our everyday vocabulary. This was one of Hunters biggest struggles early on and his team was quick to pick up on it. They would point it out to us and explain what was happening every time they saw it. Educating us while helping him was important. In Hunters case a Motor Planning struggle is when he couldn’t do a task he already knew or couldn’t apply what he learned in one task to another similar situation. Having something on his mind and knowing what he wants or needs to do but suddenly being unable to do it, (this also lead to many of his blank stares).
Hunter was approximately 9 months old when we first heard this term from his PT. He was able to sit up on his own for the most part by this age. If he was sitting up and flopped over while on the living room floor he’d just roll over onto his belly. The expression on his face was priceless! As if to ask “How did I get here?” One afternoon I had placed him in his crib upstairs to take a nap, after a short bit he was crying and clearly frustrated. I ran to his room to see what had happened, fearing the worst by the tone of his scream, and found him sitting up in his crib and leaning against the side rails. He wanted to lay down but couldn't do it or motor plan how to do it and he became very upset. He knew how to do this down stairs but the change in location confused him and made it impossible for him to carry out. It broke my heart terribly to see him so upset, I can’t imagine the emotional pain he was enduring knowing he wanted to do something he clearly knew but unable to accomplish it.
Another example of this commonly seen with him around this age was climbing over an object. It took some time for Hunter to be able to crawl over my legs or his PT’s legs. We spent many sessions working on this. Eventually he mastered it and could crawl over our legs with ease. His PT soon began introducing other objects for him to crawl over and it was noticed right away that he could no longer do it. His frustration was intensified by the fact that was also unable to motor plan how to get around it. He would be frozen in the moment. No sound, no attempt to do it another way… nothing. I would just look at my son, quietly starring at him. Inside my head I would be saying over and over what he needed to do, as if telepathically I could help him, it never worked. Sometimes it was so difficult for him you could look into his eyes you could see him crying inside yet there was no sound coming from him, he was just silent.
We saw this motor planning delay in various things he did. He could crawl down on one stair in the house but not be able to do another stair at a different location. Or individual skills he has mastered put into a sequence also made it impossible for him to do. I also describe this as trouble multitasking, I’ve found that family and friends would understand it better when shared that way. To this day Hunter struggles with motor planning although he is getting much better. I should add that his success in motor planning is also very dependent on his system being regulated, (I’ll explain that later).
We have learned in some situations to provide visual models by showing him the motor skill to refresh his mind so he can do it. We’d sometimes do it ourselves first so he could watch or provide him with a photo to look at.
The helpless feeling inside me tears me up when I see him get stuck. I can see the wheels churning inside as he tries to figure it out and the frustration on his face becomes more obvious. This can be mistaken for regression but it isn't. He is just stuck in the moment and motor planning. He didn't loose the skill; he just couldn't do it at the time.
Wednesday, November 10, 2010
5. My camera became such an important part of his success...
This video was taken of Hunter when he was approximately 16 months old. While some places in it are normal toddler responses you can also see the social concerns he had. I recorded this to just see how he would be in responding to his name, how he would respond back as far as facial expressions (smiles, giggles etc), the eye contact etc etc. You can see initially that he is into his show but once he begins to crawl around the interaction with me is very minimal, little peaks here and there and no smiles. We were scheduled to see the Developmental Pediatrician soon and after recording it I realized how important it was to document his behavior. I can describe his behavior but seeing it in person gives a much clearer picture. The doctor was very happy to have a chance to see a glimpse of him in his every day life and it was very helpful in his diagnosis.
To Label...
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 it 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 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 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.
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 it 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 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 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.
Tuesday, November 9, 2010
Monday, November 8, 2010
4. The time leading up to the official diagnosis...
13 months to 17 months was a very busy time for Hunter and our family. We were in full swing with therapy sessions in our home weekly and my husband and I were making every attempt to try to understand the struggles he was having. Sometimes it wasn’t to hard, other times it seemed impossible and was emotionally draining on us. Since the therapy was in our home, the boys were around a lot for his sessions. Hunter had a unique connection to Daniel, different then just a big brother bond. I would call Daniel his 2nd mom, although a 2nd dad would’ve been more appropriate. He had a connection that was very motherly and he was able to do the things Hunter wouldn’t allow me to do so in a way he took my place on some things. He’ll make a great dad one day! When Hunter was sad or hurt Daniel would jump to the occasion to help us soothe him, Hunter was very content in his arms and was often willing to allow him to cuddle and comfort him when he was sad. Stephens’s relationship was different though. Stephen loved him so much and desperately wanted to play closely and help out too when he could. Joining in on his therapy was exciting for him but Hunter was often nervous around him. Hunters face would light up when Stephen engaged with him or talked to him but many times he was to fast on his feet. Hunter wanted to play with Stephen but his approach was often quick, unexpected and to “in your face” whereas Daniels was slow and obvious. Daniel would go to Hunter straight on usually and Hunter would see him coming, Stephen however often approached from behind and Hunter wasn’t expecting it. Hunter would end up crying, screaming or it would lead to a complete meltdown. The therapists understood this and were wonderful in trying to help Stephen join in on an activity at a pace and approach that Hunter could tolerate.
It would break my heart when I’d see Hunter respond this way to Stephen because I could relate. Although my approach was like Daniels my ability to soothe Hunter was more like Stephens. It’s very hard to not take it personally when your child needs your comfort and will not allow you to give it. Hunter would rather drink his bottle and hold his blanket to calm down over a hug from me. OR he would allow me to hold him but his back was against my tummy instead of face to face or on my shoulder. What good am I if I can’t even soothe me own child? I understood how much it hurt Stephen, to want to help and give love only to be turned away or ignored.
Although our team was doing an exceptional job in helping him progress we also found the increase in meltdowns, sensory issues, blank stares, not responding to his name increasing and concerning and emotionally upsetting for us. The sadness in Dan’s face was indescribable when he came home from work one day and yelled over and over and over to Hunter to get his attention. Hunter was on the floor playing only a few feet from him. An outsider looking in would assume Hunter was deaf. Coming home from a long day at work and catching up with the kids is so important to Dan, he loves those moments when he walks in and the boys jumped to their feet in excitement seeing him. Not this time though, it appeared as though Dan was not heard but he was right there, only a few feet away. Hunter surely heard him, we know he did, but this monster known as Autism took that special moment way from my husband and it was heartbreaking to see it. The sadness in my husband’s eyes made my heart sink, this is NOT fair!
It would break my heart when I’d see Hunter respond this way to Stephen because I could relate. Although my approach was like Daniels my ability to soothe Hunter was more like Stephens. It’s very hard to not take it personally when your child needs your comfort and will not allow you to give it. Hunter would rather drink his bottle and hold his blanket to calm down over a hug from me. OR he would allow me to hold him but his back was against my tummy instead of face to face or on my shoulder. What good am I if I can’t even soothe me own child? I understood how much it hurt Stephen, to want to help and give love only to be turned away or ignored.
Although our team was doing an exceptional job in helping him progress we also found the increase in meltdowns, sensory issues, blank stares, not responding to his name increasing and concerning and emotionally upsetting for us. The sadness in Dan’s face was indescribable when he came home from work one day and yelled over and over and over to Hunter to get his attention. Hunter was on the floor playing only a few feet from him. An outsider looking in would assume Hunter was deaf. Coming home from a long day at work and catching up with the kids is so important to Dan, he loves those moments when he walks in and the boys jumped to their feet in excitement seeing him. Not this time though, it appeared as though Dan was not heard but he was right there, only a few feet away. Hunter surely heard him, we know he did, but this monster known as Autism took that special moment way from my husband and it was heartbreaking to see it. The sadness in my husband’s eyes made my heart sink, this is NOT fair!
What Is Stimming...
Why is stimming associated with Autism? 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. 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…
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. 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…
Turning his system ON...
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…
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…
3. The next symptom that really caught our attention...
I can clearly recall this day... Hunter was 13 months old and I had just changed him. I was walking around holding him and talking to his speech therapist. Hunter suddenly zoned out into a blank stare. It didn't last long but it caught her attention. She would later share that she had seen it a bit earlier that day but didn't say anything yet until she observed him more. When he did it again it became concerning to me as well. She asked me if I had seen it before. I had but to be honest I hadn't put much thought to it. She suggested I call his pediatrician to let them know and ask their advice. I did and they suggested I keep track of it and write it down when it happens and how long it lasts. This was the first time that I really began to feel sick to my stomach, getting scared that there was more to this then just an eating issue. Several days later I asked my sister about it. She shared that she too had seen it and wasn't sure what it was. I spoke to his PT about it as well and the team (the AMAZING therapy team) all felt it was a significant behavior and can for some kids be a seizure. It was important to find out if he was having seizures or not. If it wasn't a seizure what else was it? That is when we began discussing more about sensory concerns seen with Sensory Integration Disorders. Some kids who zone out do it for sensory reasons. We all pondered the idea that this may be what Hunter was doing.
2. Early Intervention Evaluation and the beginning of therapy...
As per the recommendation of our Pediatrician, (see "1. How this journey began, the first symptom..." post 11/10), we called Early Intervention when Hunter was 8 months old. They were amazing on the phone and set up an evaluation for him in our home. Speech would be the main focus of the evaluation since he had eating difficulties. We were pleased to hear that they also planned to evaluate him in all areas. If you are interested in hearing more about the eval itself please let me know :) It was incredibly thorough and the therapists incredibly knowledgeable! It was determined that Hunter would benefit from Speech Therapy (to aid in his eating concerns) PT and OT because he did also show some low muscle tone and delays in fine and gross motor skills. We had a Service Coordinator assigned to us (She was BEYOND amazing!!) to set up goals and a treatment plan. Speech, PT & OT began in our home weekly :) Up until this point we suspected the only main concern to be eating & oral concerns. As we became more knowledgeable of his struggles with eating during our speech therapy sessions we realized that what was causing his concerns was most likely related to oral sensory concerns and what was simular to oral dyspraxia. He wasn't formally given those as a diagnosis at that time but we did use those terms to describe his concerns.
What caused Hunters Autism?
What caused Hunters Autism?
That is the million dollar question... Many have asked me what I think causes it. There is SO much debate on its cause. Reading this article, then that article, comparing the data, researching the person who claims to have the answers is enough to make your head spin. Vaccinations, diets, parenting styles etc are a few of the things I’ve heard debated as the cause. I will gladly read any article I come across that shares the latest research but I do my best no to get caught up in trying to get to the bottom of it. Although I have some suspicions I may never know why so I feel at this point my focus is better spent on helping him to be successful and advocating for his future.
I loved talking to Hunter therapy team, to pick their brains for help and advice. They all had huge hearts and were always so generous and knowledgeable. They felt like family to me and I always knew I could lean on them for honest support. One day a few weeks after his diagnosis his PT and I were chatting and I began to talk about my age, referencing the fact that I was pregnant at 40. She looked me dead in the face and said “Don’t even go there!” She read my mind even before I finished my question. I silently made a vow that day, never again would I ponder the thought that perhaps I caused it by having him when I was 40 and considered to “old” by some pregnancy standards.
There are many things that can cause it sadly, maybe even some we haven't thought of yet, my prayers are that one day we will know. Until then I will no longer beat myself up in trying to figure out why it happened to my son.
That is the million dollar question... Many have asked me what I think causes it. There is SO much debate on its cause. Reading this article, then that article, comparing the data, researching the person who claims to have the answers is enough to make your head spin. Vaccinations, diets, parenting styles etc are a few of the things I’ve heard debated as the cause. I will gladly read any article I come across that shares the latest research but I do my best no to get caught up in trying to get to the bottom of it. Although I have some suspicions I may never know why so I feel at this point my focus is better spent on helping him to be successful and advocating for his future.
I loved talking to Hunter therapy team, to pick their brains for help and advice. They all had huge hearts and were always so generous and knowledgeable. They felt like family to me and I always knew I could lean on them for honest support. One day a few weeks after his diagnosis his PT and I were chatting and I began to talk about my age, referencing the fact that I was pregnant at 40. She looked me dead in the face and said “Don’t even go there!” She read my mind even before I finished my question. I silently made a vow that day, never again would I ponder the thought that perhaps I caused it by having him when I was 40 and considered to “old” by some pregnancy standards.
There are many things that can cause it sadly, maybe even some we haven't thought of yet, my prayers are that one day we will know. Until then I will no longer beat myself up in trying to figure out why it happened to my son.
Some of the things I've learned in this journey...
Having high functioning autism doesnt always mean it will be easier.
Autism is not always seen like "Rain Man".
It is a spectrum and many don't understand that.
It is a spectrum ~ no two are alike.
Not everyone that knows my child "sees" or understands it, even after the diagnosis has been confirmed.
It's a rollercoaster ride so I need to prepare myself for the ups and downs that can sometimes make my stomach feel sick.
There will be days that I will cry and no one will be there to give me a hug.
There will be days that I will cry and I will get a hug from the least expected place.
I will look back and realize some signs were there but I didn't realize it at the time.
Youtube is an amazing resource for ASD.
Only those that have tried my shoes on and worn them understand what it is like to walk in them.
It is caused by MANY things, vaccinations effect only some.
Even when surrounded by friends and family offering support I still feel alone at times.
Sometimes I will recognize his struggles, other times they will not be noticeable.
Sometimes I will be able to help calm him, other times I will not succeed.
The term "glass half full" will have new meaning.
To understand my son I had to educate myself and some of that education came from within.
My child will be ok, he is learning the skills needed to be successful in life!
We all have our own little quirks about us, aren't we all on the spectrum somewhere?
I will share more as I go along.....
Autism is not always seen like "Rain Man".
It is a spectrum and many don't understand that.
It is a spectrum ~ no two are alike.
Not everyone that knows my child "sees" or understands it, even after the diagnosis has been confirmed.
It's a rollercoaster ride so I need to prepare myself for the ups and downs that can sometimes make my stomach feel sick.
There will be days that I will cry and no one will be there to give me a hug.
There will be days that I will cry and I will get a hug from the least expected place.
I will look back and realize some signs were there but I didn't realize it at the time.
Youtube is an amazing resource for ASD.
Only those that have tried my shoes on and worn them understand what it is like to walk in them.
It is caused by MANY things, vaccinations effect only some.
Even when surrounded by friends and family offering support I still feel alone at times.
Sometimes I will recognize his struggles, other times they will not be noticeable.
Sometimes I will be able to help calm him, other times I will not succeed.
The term "glass half full" will have new meaning.
To understand my son I had to educate myself and some of that education came from within.
My child will be ok, he is learning the skills needed to be successful in life!
We all have our own little quirks about us, aren't we all on the spectrum somewhere?
I will share more as I go along.....
Sunday, November 7, 2010
1. How this journey began, the first symptom...
My pregnancy, although high risk, was for the most part uneventful. I would be 40 when I delivered but being healthy and having previous healthy deliveries there was no reason to concern. I had the usual aches & pains that go with pregnancy. I struggled with pregnancy induced asthma too but it was never considered a problem for my baby. Hunter being my 3rd I guess you could say "I'd been there, done that" for many things. I attribute my experience as a mother, aunt and part-time daycare provider to be the main reason why my husband and I noticed something was different so early on.
The first symptom was with eating... yup, eating! Of all things it clearly was not one of the obvious things parents look for or concern with when thinking of autism. Hunter was approximately 4 1/2 months old when eating solids became our biggest battle. It is normal for babies to need a time period to learn how to eat solids, open their mouth, swallow etc. Sometimes it goes perfectly and other times the parents will stop then try again later realizing their little one just wasnt ready yet. Many don't even start solids until 6 months so we knew we were definitely introducing solids a bit early which is why at the time it wasn't overly concerning.
When Hunter was 6 months old we found eating to be quite the battle,it was getting harder, not easier. Sometimes he could open his mouth, other times he couldn't. He struggled with moving the food around in his mouth as well. It is hard to explain and clearly one of those "you need to be there to see it to understand". We ruled out all the things that are typically seen with a baby not eating solids such as not hungry, doesn't like the taste, doesn't like the texture etc etc. It wasn't any of those. He loved the food, liked the texture and clearly showed his desire to eat it but he just couldn't do the motor skill to actually open his mouth to eat it. Hope that makes sense. We also found that if he was in a reclined position and not looking directly at us but distracted by a TV program or other things going on in the rest of the room he was able to eat better and open better. Strange I know... like if he didn't think about it so much or needing to look at us directly he was more able to do it. (we'd later understand this to be part of the social piece). When my mother in law fed him she too noticed the concerns so it validated even more what we were experiencing. He is our third child so we've done this before and his struggles just didn't feel right.
I attribute my pediatrician as the first major break in understanding him. When I went to his 6 month check I mentioned it to his doctor. Instead of telling us that he will catch on eventually or give him time or it is age appropriate he said call Early Intervention and get an evaluation. I've since realized how blessed we are to have been given that advice and that many other doctors may have said the latter.
One of my childcare kids was in Early Intervention so I did have some experience in what that meant. I took the pamphlet he gave me and put it aside for the time being. I agreed that he needed to get checked but I still had some level of doubt. I felt that maybe, just maybe, he was just a slow learner. Coming to terms and realizing that something could be wrong with your baby is very hard. So we continued with our struggle for another month, sometimes stopping solids all together and just giving him his formula because it was to frustrating on us all.
When Hunter was 8 months I was asked to care for a friends daughter who was a month older then Hunter. Sweet little thing came and spent an entire day with us :) When it was time for lunch I sat down and fed her. My heart sank :( It was SO easy to feed her, the struggles I viewed as somewhat mild in my son were now viewed as major. Seeing how well she did only validated our concerns and that Hunter was definately struggling and it wasn't normal and I needed to make that phone call to Early Intervention.
The first symptom was with eating... yup, eating! Of all things it clearly was not one of the obvious things parents look for or concern with when thinking of autism. Hunter was approximately 4 1/2 months old when eating solids became our biggest battle. It is normal for babies to need a time period to learn how to eat solids, open their mouth, swallow etc. Sometimes it goes perfectly and other times the parents will stop then try again later realizing their little one just wasnt ready yet. Many don't even start solids until 6 months so we knew we were definitely introducing solids a bit early which is why at the time it wasn't overly concerning.
When Hunter was 6 months old we found eating to be quite the battle,it was getting harder, not easier. Sometimes he could open his mouth, other times he couldn't. He struggled with moving the food around in his mouth as well. It is hard to explain and clearly one of those "you need to be there to see it to understand". We ruled out all the things that are typically seen with a baby not eating solids such as not hungry, doesn't like the taste, doesn't like the texture etc etc. It wasn't any of those. He loved the food, liked the texture and clearly showed his desire to eat it but he just couldn't do the motor skill to actually open his mouth to eat it. Hope that makes sense. We also found that if he was in a reclined position and not looking directly at us but distracted by a TV program or other things going on in the rest of the room he was able to eat better and open better. Strange I know... like if he didn't think about it so much or needing to look at us directly he was more able to do it. (we'd later understand this to be part of the social piece). When my mother in law fed him she too noticed the concerns so it validated even more what we were experiencing. He is our third child so we've done this before and his struggles just didn't feel right.
I attribute my pediatrician as the first major break in understanding him. When I went to his 6 month check I mentioned it to his doctor. Instead of telling us that he will catch on eventually or give him time or it is age appropriate he said call Early Intervention and get an evaluation. I've since realized how blessed we are to have been given that advice and that many other doctors may have said the latter.
One of my childcare kids was in Early Intervention so I did have some experience in what that meant. I took the pamphlet he gave me and put it aside for the time being. I agreed that he needed to get checked but I still had some level of doubt. I felt that maybe, just maybe, he was just a slow learner. Coming to terms and realizing that something could be wrong with your baby is very hard. So we continued with our struggle for another month, sometimes stopping solids all together and just giving him his formula because it was to frustrating on us all.
When Hunter was 8 months I was asked to care for a friends daughter who was a month older then Hunter. Sweet little thing came and spent an entire day with us :) When it was time for lunch I sat down and fed her. My heart sank :( It was SO easy to feed her, the struggles I viewed as somewhat mild in my son were now viewed as major. Seeing how well she did only validated our concerns and that Hunter was definately struggling and it wasn't normal and I needed to make that phone call to Early Intervention.
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