If you're like me, your response is what?
The first time I heard SPD in it's full name, I had no idea what it meant. I had never heard of it before! It is a term that everyone should know. As of today, 1 in 20....that's ONE IN TWENTY children is affected by it!
It is a long explanation of what exactly it is. It is a spectrum disorder just like TS or Autism. It never affects any individual in the same way and what works for one child, may not work for another. So, if you are familiar with either of those disorders, then you know an explanation is a bit harder to give to someone. It is almost easier to explain what it is not!
It is not some twisted game a child is playing to get his or her own way. It is not a "behavioral problem". It is not an undisciplined or ill disciplined child. It is not a parent looking for an excuse as to why their child is behaving in such a way. I think that about covers all the normal reactions of those that have not heard of it or don't believe in it.
What SPD is, is a neurological issue. It is how these children's brains are wired. They have no control over it, it is just how they work. Some children are very mild and can pass through life with a few "quirks". Others are way more severe and require a lot of intensive physical, speech and most importantly occupational therapy.
Imagine if you can, having a day where no matter how dim it is outside, it feels like you've got a spotlight aimed at your eyes. That no matter the level of sound, it is like someone is talking to you through a bullhorn all day. On top of that, your clothes feel like wool on your skin, itchy and scratchy. You cannot turn down the volume, you cannot change your clothes and you cannot dim the world around you. At the end of most likely 20 minutes or so, an average adult is at their wits end!
This is how an SPD brain works. Only it encompasses a myriad of other sensory issues besides, hearing, sight and touch. It includes where their body is in the environment, how their body feels while in motion or still, how things feel in their mouth, not just taste, their sometimes extremely sensitive sense of smell. It all ties in together.
For my part in this explanation, I have 2 boys with SPD! Funny enough the complete opposite of each other's issues! DW is mostly a sensory avoider with seeking behavior and JD, my youngest, is the one who doesn't register much of anything with seeking behaviors, poor coordination and some delays.
The first time I knew something wasn't quite right with DW he was only 3 months old. I realized that unless he was being rocked, in a swing or some kind of constant motion, he would not sleep. Then when he was finally into stacking blocks, he had to always do it by color. Cars had to be lined up in a row. He would not by a year and older walk on the grass. He began to choke on mashed potatoes!! No matter how watered down they were. He could not eat if he had to touch the food. He could not be fed with metal utensils or he'd just not eat. Chicken nuggets became a no no, too many crumbs in his mouth and forget about him touching them! He was unable to actually wash his hands in water but, could take a bath just fine. Noises did not bring out the best in him, which always struck me as funny because he's been loosing his hearing little by little since birth. By 3yrs old, I knew enough was enough. He'd stopped napping completely before he hit 2, he was now LITERALLY spinning all day. Or jumping all day, or running LITERALLY from one end of the house to the other, ALL day!! If these seemingly odd things at the time, were not met with and cut off at the pass, he would loose it. Taking him out of the house was even worse, he would constantly complain about the lights in the stores and how they bothered his eyes. You had about 10 minutes tops before he would meltdown to leave. He would perseverate if we took different ways to and from the stores, a relative's house, etc. He began to have clothing issues, where tags, seams, etc where he would scream and cry that they were hurting him. The list is really endless but, needless to say that when this begins at 1yr old to me, this is not a learned behavior!!
JD, my youngest, it takes two people to change his diaper, he does not register where he is in the space around him most of the time, how his body moves. He does not register getting smacked in the head, sounds don't bother him in the least. He cannot seem to tell the difference between hot and cold. He will over stuff his mouth at every opportunity and not out of hunger. He would eat all day if I let him! So, he eats every couple of hours. He is constantly seeking input, needing to always be on the move. Again I could go on but I will spare you all the pain of going on and on.
To prove my point, that this a NOT a learned set of behaviors, my little sister used to introduce DW as "the most well behaved boy you'll ever meet"!! I am not a dictator but in the house, we have rules and discipline is a high priority. With a stepson who had ADD, there was just no other option. So, it's not like the kids have the run of the house. Especially when DW came up with TS, ADHD, OCD, etc. Discipline became the backbone to the house. That's not to say that we don't have our days and our life is perfect, far from it really. It is just show that it is not a foreign concept.
Another thing about SPD that most don't know, it is usually genetic. Though they cannot find the gene, or the marker. They cannot even see it on a brain scan but, it is noticed to run in families. For example, it does run in mine. Though back then, SPD was less well known my little sister and I had it. My little sis, could not handle the feel of jean hugging her hips, nor the feel of jello in her mouth. I would scream and physically fight with my mother at a whopping 4yrs old over my socks. The seams felt like razors across my toes. I hated the feel of the wind on my bare arms, and legs during summer but preferred to wear shorts inside, even during the winter. I could go on but, would be here all day. The point really is to show that this is not behavioral, it is not a learned behavior it is how people, these children are wired!
Lastly, the signs that people almost immediately recognize as autism are those of SPD!! It is not questioned then. When it comes with a comorbid condition like TS, ADHD, OCD, etc. Mothers and children have to fight to get the recognition that they deserve. They fight to get their children treatments, to get this recognized in some way by the insurance companies. Most of the time also battling friends, relatives, school systems and even strangers! People who maybe trying to help by offering their opinions and advice, who have never heard of it, who do not see what these kids go through daily and are going off what they know from their own limited experiences or lack of knowledge. The only thing that has shown to help children with SPD is Occupational Therapy. It can take years and a lot of DAILY intensive therapy to make progress.
For anyone that actually reads this post, we are now halfway through Sensory Processing Awareness month. I urge you to get online and research, ask a parent, talk to someone. Get informed. Do your part to pass on the information and knowledge.
Tuesday, October 19, 2010
Monday, October 18, 2010
Had a moment...
I wish I was one of those moms who could switch the diet and he was miraculously better. Since he has Sensory Processing Disorder though, and oral issues are a BIG deal to him, that is not possible for him. I wish that he didn't have ALL that he does and that medication hadn't become necessary.....I could list my wishes all day long I suppose.
The other day, it just got to me a bit. I have those times when I look at my son, his tiny, skinny little body. The same body that we're fighting to keep above a certain weight line so he will not be diagnosed as failure to thrive again at almost 6yrs old, the same little body that now seems so fragile compared to other kids his age and it becomes a bit much.
I got him up this morning, put on his feet and ankle braces, checked to make sure his hearing aids were cleaned and put them on, mentally reminding myself to call his audiologist to see if we can get a new mold for his left ear. I went to the kitchen to get his meds. I grabbed the medicinal syringe as always, opened the Vyvanse capsule and dumped the contents into it. I carefully split his Inderol and crushed it, putting it into the syringe. I pulled out an additional pill for him to swallow. Filled the syringe with the Periactin. I got the Intuniv out and sat it next to the Inderol pill. I got out the new medication, Abilify and carefully put it next to his other pills to swallow.
I got his juice, his pancakes and headed to give them to him....I saw my little boy, sitting there happily watching the Disney channel. Looking content, his Ironman braces peaking out from under his jeans and over the tops of the shoes he must wear all day long. I saw his hearing aid light flash from behind his ear, to let me know that they are still functional. I felt the weight of the tiny pills in my hand and mentally counted the four medications to make sure that I had not forgotten everything. Realizing that I was only missing the Trazadone, which is his nightly medication to help him sleep, the thought crossed my mind to remind myself to call the doc again as the Trazadone was once again going to need to be increased. He just adjusts so fast to his medication.
Then it hit me, my tiny little man, with the aids, the braces and his two Blue's Clues pillow/dolls next to him, was taking four medications this morning, two this afternoon and two at night, five in total. My sweet DW was going to be taking all this. It broke my heart.
Holding back tears, I gave him his juice first (yes there is an order, there is always an order to things with him), then I emptied the syringe, handed him the "blue oval", the the "blue round" and then the new bluish pill. Thinking that most kids would object to yet another thing that they have to swallow. Instead, my sweet angel looks at me and says "why do I have a new blue one?" I tell him that it's been here just had to adjust his other meds before we could give it to him and it's to help him with being angry and feeling upset sometimes. I don't dare mention that it is to help you not panic when we throw things in the trash, like wrappers, bad food, etc. This will always cause a panic attack in him. My brave little guy, just looks at the pill and says "ok". No real hesitation, no fit, no nothing. I was so proud of him and then a little saddened as I realized that this is just normal for him. That it is like putting on socks or changing your shirt.
I am very thankful everyday as things could be much worse but, sometimes, days like today, it gets the best of me and I have these moments where the tears are just too much to hold back. To look at YOUR little one and see all that they are doing, have to do, all that they endure, no matter the disorder, I don't think that it is ever easy.
The other day, it just got to me a bit. I have those times when I look at my son, his tiny, skinny little body. The same body that we're fighting to keep above a certain weight line so he will not be diagnosed as failure to thrive again at almost 6yrs old, the same little body that now seems so fragile compared to other kids his age and it becomes a bit much.
I got him up this morning, put on his feet and ankle braces, checked to make sure his hearing aids were cleaned and put them on, mentally reminding myself to call his audiologist to see if we can get a new mold for his left ear. I went to the kitchen to get his meds. I grabbed the medicinal syringe as always, opened the Vyvanse capsule and dumped the contents into it. I carefully split his Inderol and crushed it, putting it into the syringe. I pulled out an additional pill for him to swallow. Filled the syringe with the Periactin. I got the Intuniv out and sat it next to the Inderol pill. I got out the new medication, Abilify and carefully put it next to his other pills to swallow.
I got his juice, his pancakes and headed to give them to him....I saw my little boy, sitting there happily watching the Disney channel. Looking content, his Ironman braces peaking out from under his jeans and over the tops of the shoes he must wear all day long. I saw his hearing aid light flash from behind his ear, to let me know that they are still functional. I felt the weight of the tiny pills in my hand and mentally counted the four medications to make sure that I had not forgotten everything. Realizing that I was only missing the Trazadone, which is his nightly medication to help him sleep, the thought crossed my mind to remind myself to call the doc again as the Trazadone was once again going to need to be increased. He just adjusts so fast to his medication.
Then it hit me, my tiny little man, with the aids, the braces and his two Blue's Clues pillow/dolls next to him, was taking four medications this morning, two this afternoon and two at night, five in total. My sweet DW was going to be taking all this. It broke my heart.
Holding back tears, I gave him his juice first (yes there is an order, there is always an order to things with him), then I emptied the syringe, handed him the "blue oval", the the "blue round" and then the new bluish pill. Thinking that most kids would object to yet another thing that they have to swallow. Instead, my sweet angel looks at me and says "why do I have a new blue one?" I tell him that it's been here just had to adjust his other meds before we could give it to him and it's to help him with being angry and feeling upset sometimes. I don't dare mention that it is to help you not panic when we throw things in the trash, like wrappers, bad food, etc. This will always cause a panic attack in him. My brave little guy, just looks at the pill and says "ok". No real hesitation, no fit, no nothing. I was so proud of him and then a little saddened as I realized that this is just normal for him. That it is like putting on socks or changing your shirt.
I am very thankful everyday as things could be much worse but, sometimes, days like today, it gets the best of me and I have these moments where the tears are just too much to hold back. To look at YOUR little one and see all that they are doing, have to do, all that they endure, no matter the disorder, I don't think that it is ever easy.
I have finally done it!
It's a long story really how I came by this decision for me and my oldest son but, I finally legally am doing it!!
I now find myself a wee bit scared, excited nervous but, hopeful that this will work for him. After all I have been doing it since he was two years old. I only did it then though because I knew he was ready AND I quite literally ran out of things to teach him.
I know, you're saying teach him?? lol That's right this post is nothing tawdry or salacious, it's simply me openly affirming that I'm jumped headfirst into the homeschooling world!
I wasn't left with much choice in the matter really.
DW, who has TS, ADHD, OCD, SPD, ODD, etc...was born incredibly bright. Not just my momma pride bragging either. By 1yr he was speaking in complete sentences and not only speaking clearly but, using the words properly. By 2yrs he was talking in paragraphs, using bigger words than he should’ve for his age and even going so far as to correct our grammar or pronunciation if he noted something was said wrong. lol By 2 in fact, I ran out of what normal parents teach their child. He knew all the ABCs by sight, he knew how to count to 20, he knew all his primary and expanded colors, he knew all the basic shapes and then some, he even was doing 24 piece puzzles unaided! He was hungry to learn so, what was I going to do?! Sit and say my job is done? NOPE! I gave him what he wanted, he wanted to learn some Spanish, I taught him the little bit I remembered from ESL teaching back in high school. He wanted to learn writing his ABCs so I started teaching him. He wanted to know all about tornadoes, thunderstorms, etc. So, we bought books went online, etc. By 3yrs old he was cruising the internet like he'd been born with a mouse in his hand.
So, when he was placed into a special needs pre-K, I thought he would excel. He did too. In fact, he did so well that he became bored in class and his inattentive behavior became worse, he was more withdrawn having no challenges in class whatsoever and he began to get into trouble more and more. The thing he was going to school for, sensory issues and learning to socialize properly, was now going backwards. The school district cutting his OT and cutting it. He was withdrawing from class because of noise, his inability to hold still becoming more and more an issue. His TS tics becoming louder and more disruptive. It just became a nightmare for him and for me. So, I pulled him from it last year but, still it was only a preschool. The same preschool, he'd been attending for almost two years. No big thing really.
I chose to do this because:
A) he is at a mixed level. Half of him is at a Kindergarten level and the other is at a 1st grade level (Science and Math).
B) It is unfair to the other students....according to the school district, to make some of the accommodations DW might need. Such as a chewy device when he begins to chew on his writing utensils or clothes, a small yoga ball to sit on when he can't hold still so he can complete his class work, etc. While I was highly irritated at these kinds of responses, I understood their point.
C) As he's getting older, his tics are now more frequent, louder, a bit more aggressive and obviously, a bit more distracting to other students. His attempt to hold them in during public outings leads to explosive episodes when he gets home. That look more painful and are sad to watch.
So, when I decided to homeschool him. I did so because it would best suite him and his needs. Not from some idiotic, twisted need to keep my son with me at all times, as some naive people would have you believe! Believe me, it would be soo much easier if he were in school 8hrs. I would only have 1 child to focus on and run after. lol
I look forward to this year with some trepidation....worrying about whether there will be issue since he's special needs, worrying that the bad times will be REALLY bad, etc. I also look forward to it all! I remember as a child having to college level scores in reading, science, etc. I remember the boredom, intolerance and frustration of having to wait for everyone else to "get it". Even in the G.A.T.E. (Gifted and Talented Education) class, it was still more of the same. Waiting for us all to get on the same page, I remember just being aggravated all the time! If I'd had ODD and ADHD, among other things, I can't imagine how those years would've gone!
So, offering him the freedom to go at his own pace....slow down when and if he needs it or speed through something he finds child's play, is my gift to him. I know that he will not always appreciate that but, I know what it would've meant to me. I also know that it will allow him the freedom to be himself and I can't imagine a greater joy!
Wish us luck!
I now find myself a wee bit scared, excited nervous but, hopeful that this will work for him. After all I have been doing it since he was two years old. I only did it then though because I knew he was ready AND I quite literally ran out of things to teach him.
I know, you're saying teach him?? lol That's right this post is nothing tawdry or salacious, it's simply me openly affirming that I'm jumped headfirst into the homeschooling world!
I wasn't left with much choice in the matter really.
DW, who has TS, ADHD, OCD, SPD, ODD, etc...was born incredibly bright. Not just my momma pride bragging either. By 1yr he was speaking in complete sentences and not only speaking clearly but, using the words properly. By 2yrs he was talking in paragraphs, using bigger words than he should’ve for his age and even going so far as to correct our grammar or pronunciation if he noted something was said wrong. lol By 2 in fact, I ran out of what normal parents teach their child. He knew all the ABCs by sight, he knew how to count to 20, he knew all his primary and expanded colors, he knew all the basic shapes and then some, he even was doing 24 piece puzzles unaided! He was hungry to learn so, what was I going to do?! Sit and say my job is done? NOPE! I gave him what he wanted, he wanted to learn some Spanish, I taught him the little bit I remembered from ESL teaching back in high school. He wanted to learn writing his ABCs so I started teaching him. He wanted to know all about tornadoes, thunderstorms, etc. So, we bought books went online, etc. By 3yrs old he was cruising the internet like he'd been born with a mouse in his hand.
So, when he was placed into a special needs pre-K, I thought he would excel. He did too. In fact, he did so well that he became bored in class and his inattentive behavior became worse, he was more withdrawn having no challenges in class whatsoever and he began to get into trouble more and more. The thing he was going to school for, sensory issues and learning to socialize properly, was now going backwards. The school district cutting his OT and cutting it. He was withdrawing from class because of noise, his inability to hold still becoming more and more an issue. His TS tics becoming louder and more disruptive. It just became a nightmare for him and for me. So, I pulled him from it last year but, still it was only a preschool. The same preschool, he'd been attending for almost two years. No big thing really.
I chose to do this because:
A) he is at a mixed level. Half of him is at a Kindergarten level and the other is at a 1st grade level (Science and Math).
B) It is unfair to the other students....according to the school district, to make some of the accommodations DW might need. Such as a chewy device when he begins to chew on his writing utensils or clothes, a small yoga ball to sit on when he can't hold still so he can complete his class work, etc. While I was highly irritated at these kinds of responses, I understood their point.
C) As he's getting older, his tics are now more frequent, louder, a bit more aggressive and obviously, a bit more distracting to other students. His attempt to hold them in during public outings leads to explosive episodes when he gets home. That look more painful and are sad to watch.
So, when I decided to homeschool him. I did so because it would best suite him and his needs. Not from some idiotic, twisted need to keep my son with me at all times, as some naive people would have you believe! Believe me, it would be soo much easier if he were in school 8hrs. I would only have 1 child to focus on and run after. lol
I look forward to this year with some trepidation....worrying about whether there will be issue since he's special needs, worrying that the bad times will be REALLY bad, etc. I also look forward to it all! I remember as a child having to college level scores in reading, science, etc. I remember the boredom, intolerance and frustration of having to wait for everyone else to "get it". Even in the G.A.T.E. (Gifted and Talented Education) class, it was still more of the same. Waiting for us all to get on the same page, I remember just being aggravated all the time! If I'd had ODD and ADHD, among other things, I can't imagine how those years would've gone!
So, offering him the freedom to go at his own pace....slow down when and if he needs it or speed through something he finds child's play, is my gift to him. I know that he will not always appreciate that but, I know what it would've meant to me. I also know that it will allow him the freedom to be himself and I can't imagine a greater joy!
Wish us luck!
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