My dear readers
If you dont have children with Autism or with Sensory Processing Disorder you will probably find this post boring.
But I really wanted to share our experience for those parents who do
DH and I have come to believe that the sensory system plays a critical role in Autism and this post explains why its so important to understand your child's sensory system .Of course this is just our POV and we are parents, not professionals in the field
Our Story with Sensory Processing Disorder
I think all parents notice symptoms that bother them.
R was a tactile sensory seeker right from birth ,
But, R’s sensory seeking behavior never caused us concern.
Sensory seeking manifested itself into a child that hugged, kissed a lot
This was fine as we are a very demonstrative family full of hugs touch and kisses.
( Often I am grateful for this twist of the Sensory dial .
If it had been turned the a little bit to the other side – the side of sensory avoidance – the child who hates to be hugged – I don’t know how I would have borne it .
I hope I would have learn to give love and receive love in the way in which R needed to be loved
For, surely there is more to loving and being loved than touch and hugs and kisses ?
But I must admit that I am grateful that my child is a sensory seeker )
But I digress
In those early days, we focused on the thing that bothered us - the lack of talking
And went down to road that led to a diagnosis of Autism
Our main way of teaching R was through play – we used the tools and techniques espoused by Dr Stanley Greenspan – a method called Floortime
As we learned more about R’s Autism – I started to realize that Autism may have been the outcome but SPD was a major factor in it
( a note here , this is only my opinion about my son. And of course not all children with SPD have autism . . Dr Grandin once said that all children with Autism have SPD. Our belief certainly is that SPD has played a critical role in our son’s autism)
The urge to pay attention to the people around us to imitate them, to woo them are the fundamentals upon which language and social development is based
A baby pays close attention to its caregiver – to everything the caregiver says.
This creates the basis for receptive language
The baby wants social approval and is encouraged by attention and wants to imitate.
When the baby tried to utter words mom and dad show their great approval and the baby continues to practice . This starts to build expressive language
And so on so forth
But what happens when the sensory system of the baby is neither getting nor expressing the right messages
What if hearing worked differently and a parents’ cooing sounded like yelling and caused fear or were not heard at all
Or every sound in the room ( the sound of a plane flying in the skiy , birds twittering,) felt like an assault so you wanted to tune it out ( or did not register at all )
The typical development that comes from the back and forth interactions between baby and the world would be disrupted –
This is the first aspect of how SPD can be a huge factor Autism
The second way in which SPC can be a factor in autism is the way in which babies may cope with a world that is either underwhelming or overwhelming
In effect they may be selectively tuning into stimulus in their environment that undermines typical development
They may lose themselves in spinning wheels or watching baby Einstein DVD’s not because they are fundamentally different from us but because the world is too much for them and they need to zone it out ( example Walker's mom in “The boy who loved Windows” realizes that he zones into the light pouring in from windows in order to blind himself )
What If the child( like R ) sought out a lot of visual sensation – wouldn't TV with its bright flashing lights be much more attractive than people?
In effect, their coping mechanism may be to tune out the very stimulus they need to thrive and tuning into stimulus that is not of use
Slowly we started to get a grasp of the way R’s Sensory system worked in order to optimize his ability to learn
Dr Temple Grandin says Sensory Readiness therapy is critical and akin to taking a cellphone outside to get a better signal
We realized with the help of his OT that R needed a lot of gross motor activity in order to organize himself
And so, in that first year we simply filled his day with singing, swimming and swinging
We would do very basic games with these gross motor activities
We found he was the happiest and calmest in water
So the bathtub , the swimming pool ( and eventually even a large trampoline ) became our Floortime therapy room
In this way, I believe every parent of a child with SPD needs to be a detective as to what works for their child’s system
We figured out that R used his sense of smell a lot
So when we found he could not sleep by himself – we would leave an old shirt of mine or DH’s next to him
We slowly started to understand that much of R crankiness in new places was not really personality based . It was caused by the insecurity on wondering what assaults to his sensory system awaited him. (I bet all of us would be a lot more insecure if we could not figure out where we stood in space and would be comfortable only in familiar places )\
And so we learned to use schedules so atleast he knew what lay ahead
We learned to figure out how to get him to eat healthy (largely through pureeing of vegetable ) as he is unfortunately an avoider when it comes to textures and has a very limited food repertoire .
We learned to not listen to the standard advice on “extinguishing stims” .
I think when we go about blindly “extinguishing stimming “– in effect we take away a child’s coping mechanism. ( a rather cruel thing to do even though its not meant to be cruel )
So we have made a deliberate decision to accept looking a little odd rather than for him to be in discomfort . In truth, the only kind and good way to remove a stim, I think is to replace it with a more socially acceptable stim .
All in all if learning about Autism was a shock, SPD has been more of a gradual awareness with the final diagnosis coming about six months ago even though we have been adjusting to it ever since R was an infant .
It has helped us be better parents
R’s SPD appears to be resolving somewhat as he grows up and starts to be more conscious and deliberate in the way in which he copes with it .
As his sensory system matures , some things he seems to be in fact getting desensitized too
All in all things are much better today than they were a few years ago and I hope they continue to get better and better .
I write our family’s story in the hope that it will help some parent understand their child and their responses better .
To not to see a lack of touch to mean a lack of love
And to love and parent in a way that the child is able to receive
If you dont have children with Autism or with Sensory Processing Disorder you will probably find this post boring.
But I really wanted to share our experience for those parents who do
DH and I have come to believe that the sensory system plays a critical role in Autism and this post explains why its so important to understand your child's sensory system .Of course this is just our POV and we are parents, not professionals in the field
Our Story with Sensory Processing Disorder
I think all parents notice symptoms that bother them.
R was a tactile sensory seeker right from birth ,
But, R’s sensory seeking behavior never caused us concern.
Sensory seeking manifested itself into a child that hugged, kissed a lot
This was fine as we are a very demonstrative family full of hugs touch and kisses.
( Often I am grateful for this twist of the Sensory dial .
If it had been turned the a little bit to the other side – the side of sensory avoidance – the child who hates to be hugged – I don’t know how I would have borne it .
I hope I would have learn to give love and receive love in the way in which R needed to be loved
For, surely there is more to loving and being loved than touch and hugs and kisses ?
But I must admit that I am grateful that my child is a sensory seeker )
But I digress
In those early days, we focused on the thing that bothered us - the lack of talking
And went down to road that led to a diagnosis of Autism
Our main way of teaching R was through play – we used the tools and techniques espoused by Dr Stanley Greenspan – a method called Floortime
As we learned more about R’s Autism – I started to realize that Autism may have been the outcome but SPD was a major factor in it
( a note here , this is only my opinion about my son. And of course not all children with SPD have autism . . Dr Grandin once said that all children with Autism have SPD. Our belief certainly is that SPD has played a critical role in our son’s autism)
The urge to pay attention to the people around us to imitate them, to woo them are the fundamentals upon which language and social development is based
A baby pays close attention to its caregiver – to everything the caregiver says.
This creates the basis for receptive language
The baby wants social approval and is encouraged by attention and wants to imitate.
When the baby tried to utter words mom and dad show their great approval and the baby continues to practice . This starts to build expressive language
And so on so forth
But what happens when the sensory system of the baby is neither getting nor expressing the right messages
What if hearing worked differently and a parents’ cooing sounded like yelling and caused fear or were not heard at all
Or every sound in the room ( the sound of a plane flying in the skiy , birds twittering,) felt like an assault so you wanted to tune it out ( or did not register at all )
The typical development that comes from the back and forth interactions between baby and the world would be disrupted –
This is the first aspect of how SPD can be a huge factor Autism
The second way in which SPC can be a factor in autism is the way in which babies may cope with a world that is either underwhelming or overwhelming
In effect they may be selectively tuning into stimulus in their environment that undermines typical development
They may lose themselves in spinning wheels or watching baby Einstein DVD’s not because they are fundamentally different from us but because the world is too much for them and they need to zone it out ( example Walker's mom in “The boy who loved Windows” realizes that he zones into the light pouring in from windows in order to blind himself )
What If the child( like R ) sought out a lot of visual sensation – wouldn't TV with its bright flashing lights be much more attractive than people?
In effect, their coping mechanism may be to tune out the very stimulus they need to thrive and tuning into stimulus that is not of use
Slowly we started to get a grasp of the way R’s Sensory system worked in order to optimize his ability to learn
Dr Temple Grandin says Sensory Readiness therapy is critical and akin to taking a cellphone outside to get a better signal
We realized with the help of his OT that R needed a lot of gross motor activity in order to organize himself
And so, in that first year we simply filled his day with singing, swimming and swinging
We would do very basic games with these gross motor activities
We found he was the happiest and calmest in water
So the bathtub , the swimming pool ( and eventually even a large trampoline ) became our Floortime therapy room
In this way, I believe every parent of a child with SPD needs to be a detective as to what works for their child’s system
We figured out that R used his sense of smell a lot
So when we found he could not sleep by himself – we would leave an old shirt of mine or DH’s next to him
We slowly started to understand that much of R crankiness in new places was not really personality based . It was caused by the insecurity on wondering what assaults to his sensory system awaited him. (I bet all of us would be a lot more insecure if we could not figure out where we stood in space and would be comfortable only in familiar places )\
And so we learned to use schedules so atleast he knew what lay ahead
We learned to figure out how to get him to eat healthy (largely through pureeing of vegetable ) as he is unfortunately an avoider when it comes to textures and has a very limited food repertoire .
We learned to not listen to the standard advice on “extinguishing stims” .
I think when we go about blindly “extinguishing stimming “– in effect we take away a child’s coping mechanism. ( a rather cruel thing to do even though its not meant to be cruel )
So we have made a deliberate decision to accept looking a little odd rather than for him to be in discomfort . In truth, the only kind and good way to remove a stim, I think is to replace it with a more socially acceptable stim .
All in all if learning about Autism was a shock, SPD has been more of a gradual awareness with the final diagnosis coming about six months ago even though we have been adjusting to it ever since R was an infant .
It has helped us be better parents
R’s SPD appears to be resolving somewhat as he grows up and starts to be more conscious and deliberate in the way in which he copes with it .
As his sensory system matures , some things he seems to be in fact getting desensitized too
All in all things are much better today than they were a few years ago and I hope they continue to get better and better .
I write our family’s story in the hope that it will help some parent understand their child and their responses better .
To not to see a lack of touch to mean a lack of love
And to love and parent in a way that the child is able to receive
14 comments:
My 3 yo is diagnosed with autism and SPD and tbh, I am totally with you on this. I see SPD as the bigger problem in our house, working on some of these issues has provided him the opportunity to make amazing progress with his ABA tutoring. I too have a sensory seeker who loves hugs and kisses and would also find it hard if the dial turned the other way, I would miss it soooo much as we are a very demonstrative family too:) Jen
I have a 21 month old daughter with SPD...this has been quite the journey, she started out as sensory avoiding and has become quite the seeker...but I am starting to wonder if there is something more, such as autism (PDD-NOS), ADHD, Aspergers...
What sort of a specialist did you see for your diagnosis? I am one who functions better with a diagnosis or label..,. and although I am working on getting over that, seeking as many professionals as possible, and living in a very rural area...yeah...
Thank you though for your story
Good for you for finding what works. Our ASD son has sensory issues also. Water is one of his calming things also. We use it often, but do run into trouble when water time is over.
He also likes to hug, but only me. Not my husband, my mom, or my sister, or his teachers. He will only accept affection from me consistently and every once in a while others.
We also have clothing issues as far as senses are concerned. Absolutely no tags, not even the tiniest ones. It is so hard to buy underwear and shirts that don't annoy him.
I have a swinger, spinner, music moving loving little girl who was diagnosed with Autism last fall. I was hoping it was just SPD but I know her Autism is because of the SPD. She's also can't use her words though she has them. She does like to be snuggled. Life would be worse if that's all she did was hit herself or more.
Sarah- We took our daughter to a developmental pediatrician specialist at the Erikson Institute in Chicago. We took her for a medical diagnostic testing. I don't know where you live obviously but maybe look into developmental pediatricians. Hoped I helped.
Thank you for writing this! Piper is also a seeker and her favorite stim is kissing and hugging. You've hit on a connection here and it's very intersting!
Thank you all so much for sharing your experiences
Sarah we went to an OT for SPD diagnosis
And we got the autism diagnosis from a psychologist
Do you realize just how much of your love for your family comes out as empathy? A true desire to place yourself in their shoes so that you can make their lives somehow richer?
I love this about you - that your compassion compels you to reach beyond the obvious to connect.
(And YES - I am glad you have a hugger too... and I would love to someday mmake friends with that darling of yours too!)
your love for your little boy just pours out with every word.
Like Jen and MommyToTwoBoys, I believe our son's SPD is the harder aspect of his ASD (and the driving factor behind it). He's a hugger, but only me. For most things he's a seeker, except for food.
Understanding and working with his sensory issues makes us better parents. there's no doubt about that.
beautiful post as always.
Amen! You see your child. You really see him and understand him. And that is priceless.
Yes, SPD is a huge issue! The title of my blog "Notes from the Edge of the Spectrum" comes from the fact that we have been told (more than once) that our son does not have ASD, but rather lots of sensory issues, which in turn cause some "autistic-like" symptoms. This has become more and more clear to me from OT and visits with our developmental pediatrician. His "stimming" is sensory seeking (jumping, forever jumping!!), his avoidance of us at dinner is due to overwhelming food smells, his loud voice is due to sensory seeking, his avoidance of large groups of kids is sensory based as he does well with smaller groups, he misunderstands words, he can't stand bright lights, he is at his best in the water, he loves to spin, jump and swing, etc (I could go on forever). His confused sensory system makes it hard for him to function in our world at times.
Hugs to you and R!
Great post. Our son has SPD and within one month he was diagnosed as having PDD-NOS by one psychologist, and as not being on the spectrum by another psychologist. It's always interesting when experts disagree (but not a lot of fun when they're disagreeing about your kid!).
As my son has matured and as his OT and speech therapy have taken effect, his stimmy behaviors have faded and he's rapidly catching up to his peers in speech. In his case, it really was the sensory issues that made him appear as though he was on the spectrum. He's four now and receiving services through the school district, but there's a good chance he'll no longer be on an IEP by the time he reaches first grade. So yes, addressing sensory issues is absolutely key.
Another gem of a post K, you see the obvious, and apply it to your special child instead of putting him in a box and saying this is what life is.
It would be a world changing thing if we all applied the principles that you speak of in this post.
And if us parents of "NORMAL" children would treat our special kids the way you and your DH treated R, there would be a lot more healthy and better adjusted kids today.
thanks for sharing.
As a Floortime specialist, I learn so much from parents and what they know to be true about their children. Thank you so much for your insights... you have good ones and are doing an important thing by sharing them. It does seem like treating the symptoms of SPD first makes the rest of the work much more productive. Its so important that its addressed in the very first developmental milestone that Greenspan talks about and which helps the child to develop interest in the world. I am (obviously) a big supporter of Floortime and am so glad that you are sharing with us all your ups and downs with it. Thank you.
What Mr. Daddy said. (Copping other comments keeps mine shorter.) I want to emphasize a couple of points you made (of course)...
"As his sensory system matures , some things he seems to be in fact getting desensitized too".
Behaviors interpreted as sensory issues likely are maturation issues - or the behaviors change as the child matures. Some and certain habits/parenting/therapy seem to facilitate the maturation.
Thank you for mentioning vision, hearing and smell as important (and early) sources of sensory dysfunction (slower/different development). I think vision and hearing have been especially neglected. The movie Temple Grandin shows her sensitivities in these areas so well.
Like everyone else commenting here, I love reading about your love of R. Barbara
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