I concluded my last post with a brief mention of the amazing young woman who changed not only Riley's life, but ours as well. This young woman, whom shall be called "Angel" was an occupational therapist who was well-versed in Sensory Processing Disorders.
After observing Riley for about twenty minutes during her day of showing our Developmental Therapist, she then sat down with me and not only spoke, but really listened. When we had gone through many of my "mom" observations, I asked her if she thought "this sensory stuff" fit. Her response? "I have seen this before and I can help you." My reaction? I broke down and cried. She was the first person who acknowledged and supported that there really was something going on with my little boy and that something could be done to help him.
As soon as these two amazing young women left, I contacted our case manager and asked if "Angel" could begin working with Riley as soon as possible. Things were put into place and she started working with us the following week.
During her first visit, Angel and Riley interacted while she removed and stacked all the pillows and cushions from the sofa. She lifted Riley up in the air (yes, I was freaking out) and pretty much dropped my tiny little 16 pound twenty-month old boy into the pile. I thought he would freak out, but he did exactly the opposite: he almost visibly breathed a sigh of relief. It as as though he had been holding in all the tension and stress of his needs not being met and someone finally flipped the release switch.
From a parenting standpoint, it quickly became apparent that we had been doing everything wrong for this child. This has long been the hardest thing for me to reconcile in my parenting book of checks and balances. We were doing everything right for nearly every other child, by our third kid, we should have half a clue, right? We did everything we knew how to do, but we were doing everything wrong for this child.
When we would gently caress him, it felt like spiders on his skin. When we would snuggle him, if he wanted to be touched at all, he nearly wanted to be manhandled so he could really feel what we were doing. He craved what we have since learned is sensory input: deep pressure, firm wrappings, swaddling, spinning, hanging upside down, swinging while wrapped in a blanket turned into kind of a hammock and more. In short, to help him, we needed to overstimulate his system so that it would level out. The term that made the most sense to me was that we were helping him get neurologically organized. In order to do this, we had to throw all the parenting rules out the window.
The difference in Riley was immediate. When he would begin having what we thought was a meltdown, we would overstimulate him and he would find emotional balance. When he was having difficulty eating, we would try some of the tricks and tactics we were learning from the feeding nurse, nutritionist and our Angel...and he would actually eat, almost voluntarily.
Within just a few days of Angel's first visit, I took Riley to see a new pediatric gastrointestinal (GI) specialist. My previous experiences with GI doctors had not been all that great, but this guy was supposed to be "the best". Our pediatrician referred us to him because at twenty months, Riley weighed sixteen pounds, just two pounds more than he had on his first birthday and less than 10 pounds more than he had weighed at birth. His total development had slowed down, his head growth had stopped and his lateral growth had pretty much flat lined as well. He was so tiny it was heartbreaking. I was holding out great hope for our newly placed team from Early Intervention, but I kept the appointment anyway...as a mother, I was desperate to help my little boy.
From the moment the doctor entered the room, my mommy gut was on high alert. This man started firing questions at me and cutting me off when I would attempt to answer. He started throwing very scary potential outcomes at me and then came up with an "action plan" that involved numerous highly invasive, not to mention expensive, tests, one of which that involved hospitalization for two days with a probe shoved down Riley's nose and the threat that if he did not cooperate by staying nearly completely still for the 48-hour period, he would have to be restrained. Let's get real here...all "stuff" aside, Riley was just shy of two years old. Tell me one toddler who will willingly stay still for 48 hours while confined to a hospital bed. Seriously?
I told the doctor that we had just started working with an OT and that she believed that working with his SPD issues stood to help his feeding issues. His response? "I don't put any stock in that "sensory stuff" but what I will tell you is that if you continue pushing off directly addressing his GI problems, you could do your son irreparable harm." I told him I just wanted to give the Early Intervention team sixty days. The doctor's implied threat was that if I waited sixty days, I would never forgive myself if he had permanent damage...or worse. I took a deep breath, made a follow-up appointment and left his office before the tears started.
Once in the car, I called my husband and told him that apparently, despite my best efforts, I truly did have BSM (Bad Mommy Syndrome) and that everything we had done to date had potentially caused irreparable damage. That by trying to help him, we were doing more harm. I then called our pediatrician and asked her how severe the consequences could or would be if I pushed off this battery of invasive tests for sixty days. She told me as a mother, she understood what I wanted to do, but as a doctor, she needed to advise me that this doctor was "one of the good guys" and it would be best to follow his advice. All that said, she said she did not believe waiting two months would create significant harm, but if anything changed, even a tiny bit, she wanted me to take the GI doctor's advice and move forward with scheduling the tests. I agreed and headed home with my fragile little 16 pound boy in tow.
We jumped in, feet first, and started working with our Early Intervention team. We implemented what Angel called a sensory diet and worked with Riley daily to address his various sensory processing challenges. Just a quick flashback, Riley weighed over 7 pounds when he was born. He weighed 14 pounds at twelve months. He weight 16 pounds (just a 2 pound gain) at twenty months when he started working with Angel. On his second birthday, he weighed TWENTY pounds! He gained a pound a month for the first four months after directly addressing his sensory processing difficulties. At that point, it was without a second thought that I canceled all follow-up appointments with the horrible doctor who all but accused me of child abuse for following my gut and my heart.
It was right around that time that I truly realized how absolutely critical it was to truly stand up for and advocate for my child. Not that I did not do that from the moment he was born, but I was quickly learning what the feeding nurse had told me during her first visit: that I am the expert on my child. I took that one step further and realized that helping Riley grow and develop had expanded beyond typical parenting, it had also become my job. I had to learn to fight for him because he could not fight for himself. Somewhere along the way, I also realized how far beyond the "normal" parenting book this had extended. We needed to relearn many of the parenting skills and approaches we had utilized with the other children. Raising Riley was a very different learning process in parenting than raising our first two children.
In the years since discovering not only Riley's Sensory Processing Disorder, but understanding how it affects and impacts nearly every part of his life on a daily basis, we have all learned and grown. Over the years, many people have said to us, "How do you do it?" My standard response is also the name of this blog, "As Opposed to What?" If I do not fight for him and learn to raise him and help him grow and develop according to his needs, who will? Yes, it's hard...sometimes it feels like it is too hard, but that's tough cookies for me. Helping him cannot possibly be harder for me than not having his needs met while waiting for us to figure out what is going on can possibly be for him. He is my son. Advocating for him is my job. Helping him learn and grow is what I committed to do when I accepted the responsibility of becoming his parent by the very nature of carrying him inside me for nine months. If I just said, "this is too hard...he's going to have to learn how to deal with things my way because I don't want to learn what he needs..." what kind of mother would that make me? Talk about BMS!
Riley is now 9 1/2. He is in a typical 3rd grade classroom and is thriving. He does well in school and most of his sensory processing challenges are controlled by a variety of strategies that have just become a part of his day to day life. He has friends and is just part of the class...not "that kid". When he was five, Riley was also diagnosed with high-functioning Autism. We also address the Autism and its related symptoms and challenges as part of the master plan in raising Riley, but in many ways it is secondary to his SPD. In the world of doctors and formalized diagnoses, the Autism diagnosis has made some of our fights with insurance carriers and managed care as SPD is not a true "medical" diagnosis. There are amazing individuals working on correcting this, advocating for individuals with Sensory Processing Disorders, and fighting the good fight to not only increase awareness, but also to provide for recognition of this disorder that affect 1:20 individuals.
This brings our story up to date. Obviously there is so much more that happens on a day to day basis...one of these days the finer details will work their way into a book. For now, this will hopefully suffice and help others gain a better understanding of SPD as they work through their own journeys or help friends and family members who have sensory difficulties or challenges that keep them from truly reaching their personal potential.
Please stay tuned...there are many more thoughts spinning around in this little head of mine.
Have an amazing day!
Monday, October 29, 2012
Thursday, October 25, 2012
Sensory Awareness Month - Our Story Part 2 - Finally Some Help!
I was new to the entire Early Intervention process. I had never heard of it, I had never had reason to access it, and I did not know anyone who had been through the process, at least until I started going through the process and then, suddenly, it was amazing how many people had utilized Early Intervention but did it behind the scenes! I was so used to being blown off by awful dismissive doctors who thought I was not only a crazy-mom, but also a bad mother (remember the BMS - Bad Mommy Syndrome).
During the first phone call to Early Intervention, I quickly realized this was different. The case manager on the other end of the line actually listened to me. She asked questions, we discussed my answers and she started putting together an action plan. To my complete and utter amazement, she also told me that Early Intervention had a feeding nurse on staff that she would be able to send to my home to work with Riley. After over a year of driving 90 minutes to sit in a waiting room for at least two hours only to be moved to an exam room to sit for at least another 90 minutes for some egotistical GI doctor to sweep in, push, poke and prod my 14 pound little guy, ask me questions but not allow me the opportunity to answer and the spout off some diagnosis that did not fit at all with what I was seeing at home, and then to prescribe medication that should "solve all the problems" (but in reality did nothing), then to drive 90 minutes home, in tears, with no answers, no help, nothing...this was an absolute breath of fresh air! On a side note, I completely realize that was a horrific run-on sentence, but that is exactly what the entire experience was like...one big run on disaster!
Within a week Early Intervention brought a team of therapists to our home. They looked at Riley, they tested and evaluated him, in his natural environment, and we talked...for hours. They asked questions, I answered, they listened...even when I gave "mom" answers rather than technical answers. At the end of the evaluation, it was determined that Riley definitely qualified for services due to his developmental delays and severe failure to thrive. The only area in which he was even close to "typical" was in his fine motor development, so there was no need to bring in an occupational therapist (hereafter referred to as OT).
In less than a week, we had a team assembled and we got to work. Our team consisted of a physical therapist (PT) to help with his core strength and gross motor development, a speech therapist (oh...did I mention he was completely non-verbal? Not babbling, not cooing...nothing), a developmental therapist (DT) who helped pull everything together and coordinate all the other pieces of the Riley Puzzle, an RN who specialized in children with feeding difficulties and challenges, and a nutritionist. All these amazing individuals came to our home once a week. Granted, we had quite the revolving door, but we finally had some help and their overriding premise was, "you are the expert about your child". WOW!
Within the first two weeks, several of these amazing women started throwing around the words "sensory processing". In the beginning, my brain was on total overload and there were so many new words, concepts, and so on that I was trying to process and put in context that "sensory processing" was just added to the pile...until I realized it was the same term from several disciplines: Riley is having trouble eating and drinking because the front part of his mouth is so hypersensitive that he would rather not eat than has something pass through the mid-line of his mouth, and: Riley does not like to swing because it feels like he is freefalling, and it went on and on.
I am a firm believer that there are not accidents, rather that what we need is provided for us if we are open to accepting it. Somewhere around Week 3 of working with our Early Intervention team, our DT told me she would be bringing someone with her the following day. This young woman was an OT and new to their agency, so she was "shadowing" our DT to learn the ropes. She also indicated that this woman was well versed in Sensory Processing Disorders and may be able to give me some insight about Riley's SPD issues.
To make a long story short, her visit the next day changed our lives...
This seems like a good stopping place...
Until next time...
Heather
Sunday, October 21, 2012
Sensory Awareness Month - Our Story: Part 1
It's Sensory Awareness Month! Today's post is a little more on parenting kids with SPD than SPD itself, but they really do go hand in hand.
As a parent, there are things you are just supposed to do. If there were an official parenting handbook that they hand out at the hospital, many of these things would be in it....failure to do some of these things often results in looks of disdain from those parents (yes...we all know the type of parents to which I'm referring...). When you are dealing with a child with extreme SPD, even if you have absolutely no idea what is going on with your darling little bundle of joy, those looks come not only from other parents, but from family, doctors....it feels like everyone!
I'm going to share a little of our story and the SPD journey we have taken. Fair warning...this post will probably be pretty long.
For many of you, this story may seem eerily familiar, for others, you may wonder how we did not know, and yet others, you may think, why didn't they just bully through it. Long ago I learned that when parenting, I need to worry about my family and how to make things work best for all of us. The rest of the world does not live in our home and deal with our day to day blessings and challenges. The old adage about not judging until you walk a mile in my shoes? yep...it's true.
My darling little boy decided to enter the world on his own terms. I was scheduled to be induced on the fourth, but at 9:00 pm the night of the first (a Saturday night, no less), he thought it would be a great idea to throw my well controlled world out of whack. It is probably worthy of mention that early February in Maryland is not known for stellar weather, rather, the ground was covered in snow and the roads were icy.
By 10:00 pm, we realized this was not a false alarm, this was really going to happen. Our two older children, ages seven and 20 months, were soundly sleeping, with no idea the plan had changed. We called Plan B (Grand-mom) and kindly asked her to venture out in this awful weather in the middle of the night. She arrived around 11:30 to stay with the "big" kids and off we ran, with contractions coming hard and fast and the hospital 25 minutes away in decent weather, but remember it was downright gross out.
Racing down the highway, hoping that for once local law enforcement would be on alert and escort us, we realized that we did not even have a name finalized for our little guy. We also called my mom, who was due in the next day from the west coast, and told her that grandbaby #3 was making an early appearance.
I stumbled across the lobby of the hospital, stopping for a contraction or two along the way, and checked in with the teenager at the desk (she probably wasn't really a teenager, but since I swore this child was dropping out any second and she was taking her own sweet timing processing paperwork, there was no way she had kids yet!). From there, she sent me in to sit and wait! Seriously??? Then an even younger teenager came in to tell me she was going to take me back to make sure I was really in labor...ummm...3rd kid, can't breathe through the contractions, midnight in snow and ice? Did she think I had nothing better to do? (yes, I know she was just doing her job) It was just after midnight at this point.
I'll skip ahead a couple hours...Riley was born, 7 lbs 6 ounces with bright blue eyes and a full head of very dark hair. He was cleaned up and put immediately in an incubator as his body temperature was dropping. Shortly thereafter, he was taken to the NICU because he could not hold his temperature as expected. Thankfully, this stabilized within a few hours and we were able to take that off the list of things that we would worry about with our darling little boy.
On a side note, Matt went home so he could be there when the other kids woke up. They woke up wondering where I was and why Grand-mom was there...the whole thing happened while they were sleeping.
Once he was stabilized, they brought my new little darling in to visit me and we attempted to begin the feeding process. It seemed that he took to nursing quite well and easily, but we quickly realized that although he was latching on, his weight kept dropping. When I was ready for discharge, they nearly kept him as he had dropped significantly below his birth weight. He was continuing to latch, but was having trouble with his "suck". We attempted to finger/tube feed and bottle feed as well. He wanted no parts of any of it. They did discharge us home, but my mommy sense was on high alert: something wasn't working like it should with Riley.
We spent the next eighteen months battling feeding and sleeping issues with Riley. At 5 days old, while traveling back to the hospital to have Riley weighed and to meet with the lactation consultant, my mother commented that Riley had been awake for nearly 8 hours and had not napped at all. This quickly became a way of life for him, he slept 6-8 hours in a twenty-four hour period, rarely napping, and having extreme difficulty falling asleep nearly every night. During a visit to the pediatrician, we discussed this. Her comment? "All kids sleep...have you tried XYZ?" She was a wonderful woman (with no kids at the time) but I looked at her like she had two heads. My response? "Do you really think there is anywhere, any trick, any anything I have not tried to get this child to sleep??? I swear he just isn't tired."
At about 6 months, I remember telling the pediatrician that it just did not seem like he was hungry. Her response? "All children eat..." The part she did not add on? "You must be doing something wrong..." It was around then that Riley was referred to a feeding clinic as he had crossed the line into the realm of Severe Failure to Thrive. I tried everything, the doctors tried everything, and Riley just would not eat. He would go hours without eating and he never made a peep. From the outside looking in, he was the "perfect child". He never cried. He never fussed. He just sat there, perfectly content to watch the world go by. On the flip side, he did not eat, he did not sleep, and he was not making any movement toward normal developmental milestones...no babbling, no drooling, no teething...not working on crawling...nothing...nada.
Moving ahead to Riley's eighteen month check-up, the pediatrician recommended I contact Early Intervention as he had not met any of the developmental milestones. At eighteen months, he was not walking, although he was pulling up and cruising, but it seemed he was afraid to let go of the couch, the piano bench, the chairs, our hands... At eighteen months, he was also completely non-verbal.
In hindsight, I would love to have seen a video of my face when she told me these things. I looked at her rather blankly and said, "Oh...I guess he should be doing those things by now." When they do not eat well, if at all, or sleep well, if at all (so what little food we could get in him was burned off because his body did not get good solid periods of time to shut down and conserve energy), who cares if he isn't walking or talking.
By this time, we had worked through the pediatrician, the University of Maryland Medical Center Pediatric Specialty Clinic (for feeding issues, etc), and several areas of Johns Hopkins Hospital and Medical Center. After standing by as my little guy was poked and prodded, tested, watched and poked some more, the best answer we were given was that Riley had BMS. Never heard of it? It's Bad Mommy Syndrome: read as, "we cannot find anything medically wrong with your child, so you must be doing something wrong."
I am guessing it goes without saying that I left many a visit in tears. I had this precious little boy whom I could not help. He was full-term. He was over 7 pounds when he was born, but he weighed a mere 14 pounds on his first birthday. When he started with Early Intervention, he weighed in at 16 pounds. He had finally sort of started toddling on his own, but he was not speaking, not babbling, not drooling, nothing...nada.
I was exhausted, I was heartbroken, I felt that I was letting my other children down by putting so much time and energy into keeping Riley off a feeding tube and out of the hospital. I had left my career of choice to give him all of my attention, I had talked to doctors, I had read and read, and nothing we did was making a difference...he still was not growing, gaining weight, or moving toward typical developmental milestones. I was concerned about bringing in yet one more team of people to make me feel like I was failing as a mother...I did not know anything about this Early Intervention nonsense, but resisting it apparently was not an option, so I hunted down the number and called.
From the first phone call, I knew this was going to be different. The woman on the other end of the phone listened to me. For the first time since Riley was born, I felt somewhat validated and that perhaps someone was going to help me figure out what was going on with him rather than subjecting him to a zillion tests to tell me everything that was not wrong with him (he did not have Celiac Disease, he did not have Cystic Fibrosis, he did not have this or that...).
I am going to end this chapter of our lives here and move forward in another post. Those of you who have lived with and/or learned about sensory issues, problems and the like have probably picked up on many SPD clues throughout this post...with the 20/20 clarity of hindsight, I can see them too, but up to that point, I had not heard anything about sensory processing this and that. As I learned along the way, you do not know what you do not know. It sounds simple and basic...but it is true nonetheless.
Until next time...have a fabulous day!!!
As a parent, there are things you are just supposed to do. If there were an official parenting handbook that they hand out at the hospital, many of these things would be in it....failure to do some of these things often results in looks of disdain from those parents (yes...we all know the type of parents to which I'm referring...). When you are dealing with a child with extreme SPD, even if you have absolutely no idea what is going on with your darling little bundle of joy, those looks come not only from other parents, but from family, doctors....it feels like everyone!
I'm going to share a little of our story and the SPD journey we have taken. Fair warning...this post will probably be pretty long.
For many of you, this story may seem eerily familiar, for others, you may wonder how we did not know, and yet others, you may think, why didn't they just bully through it. Long ago I learned that when parenting, I need to worry about my family and how to make things work best for all of us. The rest of the world does not live in our home and deal with our day to day blessings and challenges. The old adage about not judging until you walk a mile in my shoes? yep...it's true.
My darling little boy decided to enter the world on his own terms. I was scheduled to be induced on the fourth, but at 9:00 pm the night of the first (a Saturday night, no less), he thought it would be a great idea to throw my well controlled world out of whack. It is probably worthy of mention that early February in Maryland is not known for stellar weather, rather, the ground was covered in snow and the roads were icy.
By 10:00 pm, we realized this was not a false alarm, this was really going to happen. Our two older children, ages seven and 20 months, were soundly sleeping, with no idea the plan had changed. We called Plan B (Grand-mom) and kindly asked her to venture out in this awful weather in the middle of the night. She arrived around 11:30 to stay with the "big" kids and off we ran, with contractions coming hard and fast and the hospital 25 minutes away in decent weather, but remember it was downright gross out.
Racing down the highway, hoping that for once local law enforcement would be on alert and escort us, we realized that we did not even have a name finalized for our little guy. We also called my mom, who was due in the next day from the west coast, and told her that grandbaby #3 was making an early appearance.
I stumbled across the lobby of the hospital, stopping for a contraction or two along the way, and checked in with the teenager at the desk (she probably wasn't really a teenager, but since I swore this child was dropping out any second and she was taking her own sweet timing processing paperwork, there was no way she had kids yet!). From there, she sent me in to sit and wait! Seriously??? Then an even younger teenager came in to tell me she was going to take me back to make sure I was really in labor...ummm...3rd kid, can't breathe through the contractions, midnight in snow and ice? Did she think I had nothing better to do? (yes, I know she was just doing her job) It was just after midnight at this point.
I'll skip ahead a couple hours...Riley was born, 7 lbs 6 ounces with bright blue eyes and a full head of very dark hair. He was cleaned up and put immediately in an incubator as his body temperature was dropping. Shortly thereafter, he was taken to the NICU because he could not hold his temperature as expected. Thankfully, this stabilized within a few hours and we were able to take that off the list of things that we would worry about with our darling little boy.
On a side note, Matt went home so he could be there when the other kids woke up. They woke up wondering where I was and why Grand-mom was there...the whole thing happened while they were sleeping.
Once he was stabilized, they brought my new little darling in to visit me and we attempted to begin the feeding process. It seemed that he took to nursing quite well and easily, but we quickly realized that although he was latching on, his weight kept dropping. When I was ready for discharge, they nearly kept him as he had dropped significantly below his birth weight. He was continuing to latch, but was having trouble with his "suck". We attempted to finger/tube feed and bottle feed as well. He wanted no parts of any of it. They did discharge us home, but my mommy sense was on high alert: something wasn't working like it should with Riley.
We spent the next eighteen months battling feeding and sleeping issues with Riley. At 5 days old, while traveling back to the hospital to have Riley weighed and to meet with the lactation consultant, my mother commented that Riley had been awake for nearly 8 hours and had not napped at all. This quickly became a way of life for him, he slept 6-8 hours in a twenty-four hour period, rarely napping, and having extreme difficulty falling asleep nearly every night. During a visit to the pediatrician, we discussed this. Her comment? "All kids sleep...have you tried XYZ?" She was a wonderful woman (with no kids at the time) but I looked at her like she had two heads. My response? "Do you really think there is anywhere, any trick, any anything I have not tried to get this child to sleep??? I swear he just isn't tired."
At about 6 months, I remember telling the pediatrician that it just did not seem like he was hungry. Her response? "All children eat..." The part she did not add on? "You must be doing something wrong..." It was around then that Riley was referred to a feeding clinic as he had crossed the line into the realm of Severe Failure to Thrive. I tried everything, the doctors tried everything, and Riley just would not eat. He would go hours without eating and he never made a peep. From the outside looking in, he was the "perfect child". He never cried. He never fussed. He just sat there, perfectly content to watch the world go by. On the flip side, he did not eat, he did not sleep, and he was not making any movement toward normal developmental milestones...no babbling, no drooling, no teething...not working on crawling...nothing...nada.
Moving ahead to Riley's eighteen month check-up, the pediatrician recommended I contact Early Intervention as he had not met any of the developmental milestones. At eighteen months, he was not walking, although he was pulling up and cruising, but it seemed he was afraid to let go of the couch, the piano bench, the chairs, our hands... At eighteen months, he was also completely non-verbal.
In hindsight, I would love to have seen a video of my face when she told me these things. I looked at her rather blankly and said, "Oh...I guess he should be doing those things by now." When they do not eat well, if at all, or sleep well, if at all (so what little food we could get in him was burned off because his body did not get good solid periods of time to shut down and conserve energy), who cares if he isn't walking or talking.
By this time, we had worked through the pediatrician, the University of Maryland Medical Center Pediatric Specialty Clinic (for feeding issues, etc), and several areas of Johns Hopkins Hospital and Medical Center. After standing by as my little guy was poked and prodded, tested, watched and poked some more, the best answer we were given was that Riley had BMS. Never heard of it? It's Bad Mommy Syndrome: read as, "we cannot find anything medically wrong with your child, so you must be doing something wrong."
I am guessing it goes without saying that I left many a visit in tears. I had this precious little boy whom I could not help. He was full-term. He was over 7 pounds when he was born, but he weighed a mere 14 pounds on his first birthday. When he started with Early Intervention, he weighed in at 16 pounds. He had finally sort of started toddling on his own, but he was not speaking, not babbling, not drooling, nothing...nada.
I was exhausted, I was heartbroken, I felt that I was letting my other children down by putting so much time and energy into keeping Riley off a feeding tube and out of the hospital. I had left my career of choice to give him all of my attention, I had talked to doctors, I had read and read, and nothing we did was making a difference...he still was not growing, gaining weight, or moving toward typical developmental milestones. I was concerned about bringing in yet one more team of people to make me feel like I was failing as a mother...I did not know anything about this Early Intervention nonsense, but resisting it apparently was not an option, so I hunted down the number and called.
From the first phone call, I knew this was going to be different. The woman on the other end of the phone listened to me. For the first time since Riley was born, I felt somewhat validated and that perhaps someone was going to help me figure out what was going on with him rather than subjecting him to a zillion tests to tell me everything that was not wrong with him (he did not have Celiac Disease, he did not have Cystic Fibrosis, he did not have this or that...).
I am going to end this chapter of our lives here and move forward in another post. Those of you who have lived with and/or learned about sensory issues, problems and the like have probably picked up on many SPD clues throughout this post...with the 20/20 clarity of hindsight, I can see them too, but up to that point, I had not heard anything about sensory processing this and that. As I learned along the way, you do not know what you do not know. It sounds simple and basic...but it is true nonetheless.
Until next time...have a fabulous day!!!
Friday, October 19, 2012
Sensory Awareness Month Topic #9 - My Hair Hurts!
Ouch! Don't cut my hair! It hurts!!!!
OK, logically we know that hair cannot hurt unless it is pulled, and even then, it is the roots being pulled from the skin that hurts, not the hair itself, but to some people (perhaps more than you realize), certain contact with their hair is the equivalent of nails on a chalkboard to others...on a totally random tangent, it seems like nails on a chalkboard may soon be going the way of floppy disks since schools now use and install white boards rather than chalk boards...hmmmm!
I have actually heard of an adult who needs tranquilizers before having her hair cut! It is that traumatic for her! It is not that she does not want it cut, but the feeling of the scissors on her hair, the strange hands running through it, the combing of wet hair, the sound of the scissors snipping, snipping, snipping...the entire experience is simply more than she can tolerate!
This is the world of a sensory sensitive individual. Their seemingly extreme overreactions to every day experiences and tasks result from a reality that most of us cannot begin to understand as we have little, if anything, to compare it to. "Just get over it" or "just deal with it" is easier said than done. The brain of the "Sensory Kid" or adult sends messages to the body differently than expected or anticipated. In a perfect world, the "sensory individual" learns to accommodate their challenges (tranquilizers before a hair cut or cutting tags out of clothing), but it is difficult to make these difficulties go away completely.
The hope and intent of Sensory Awareness Month is to show and share the reality of situations that are routine and mundane for most people...helping the public understand that sometimes a haircut, is so very much more than just a haircut.
Have a fabulous day!
OK, logically we know that hair cannot hurt unless it is pulled, and even then, it is the roots being pulled from the skin that hurts, not the hair itself, but to some people (perhaps more than you realize), certain contact with their hair is the equivalent of nails on a chalkboard to others...on a totally random tangent, it seems like nails on a chalkboard may soon be going the way of floppy disks since schools now use and install white boards rather than chalk boards...hmmmm!
I have actually heard of an adult who needs tranquilizers before having her hair cut! It is that traumatic for her! It is not that she does not want it cut, but the feeling of the scissors on her hair, the strange hands running through it, the combing of wet hair, the sound of the scissors snipping, snipping, snipping...the entire experience is simply more than she can tolerate!
This is the world of a sensory sensitive individual. Their seemingly extreme overreactions to every day experiences and tasks result from a reality that most of us cannot begin to understand as we have little, if anything, to compare it to. "Just get over it" or "just deal with it" is easier said than done. The brain of the "Sensory Kid" or adult sends messages to the body differently than expected or anticipated. In a perfect world, the "sensory individual" learns to accommodate their challenges (tranquilizers before a hair cut or cutting tags out of clothing), but it is difficult to make these difficulties go away completely.
The hope and intent of Sensory Awareness Month is to show and share the reality of situations that are routine and mundane for most people...helping the public understand that sometimes a haircut, is so very much more than just a haircut.
Have a fabulous day!
Wednesday, October 17, 2012
Sensory Awareness Month Post 9 - Too Loud!
It's Sensory Awareness Month! Today's sensory reality check is about noise!
Hypersensitivity to noise is an area that affects me more than my "Sensory Kid". There are times that the non-stop buzz of auditory chaos completely overwhelms me to the point I have to either remove myself from the situation or, if possible, remove the noisy "stuff" from my environment.
As a parent, there have been many times that the constant kid chatter, especially in the car, has nearly sent me over the edge. Several years ago, my husband Matt came up with a very good theory of toddler/preschooler verbal vomit: that they have all these great and interesting ideas, thoughts and insights but have not learned how to keep them inside their head...so it all comes pouring out...NONSTOP! It has always made a lot of sense to me, but it did nothing to keep me from feeling like I was going just a wee bit crazy. I have wondered if perhaps this was due, at least in part, to the fact that I am an only child, so I grew up in a pretty quiet and peaceful environment. It was easy to find silence and solitude at home...now? in my crazy world with three kids, two dogs, cell phones ringing and chirping, television blathering, music playing, background conversations chattering...not so much.
Moving along, there are other members of my family who are easily overwhelmed by noise...the sound of a toilet flushing in a fairly small bathroom, the sound of thunder (this is a combination of anxiety and the actual noise itself), fireworks, pots and pans clattering...and the list goes on. It would seem that the common denominator in most of these is that they are noises that cannot be avoided. Where the shift occurs between "just noise" and sensory overloading noise is, again, in the ability to filter the noise out: this is where things shift occurs from just not liking a lot of noise and not being able to tolerate that very same noise.
When the flushing toilet causes one to cover their ears and thunder requires noise-deadening headphones, problems with noise jump to a very different level, especially when this happens every single time: from order to disorder.
Just a few thoughts for the day.
Have a great one!
Heather
Hypersensitivity to noise is an area that affects me more than my "Sensory Kid". There are times that the non-stop buzz of auditory chaos completely overwhelms me to the point I have to either remove myself from the situation or, if possible, remove the noisy "stuff" from my environment.
As a parent, there have been many times that the constant kid chatter, especially in the car, has nearly sent me over the edge. Several years ago, my husband Matt came up with a very good theory of toddler/preschooler verbal vomit: that they have all these great and interesting ideas, thoughts and insights but have not learned how to keep them inside their head...so it all comes pouring out...NONSTOP! It has always made a lot of sense to me, but it did nothing to keep me from feeling like I was going just a wee bit crazy. I have wondered if perhaps this was due, at least in part, to the fact that I am an only child, so I grew up in a pretty quiet and peaceful environment. It was easy to find silence and solitude at home...now? in my crazy world with three kids, two dogs, cell phones ringing and chirping, television blathering, music playing, background conversations chattering...not so much.
Moving along, there are other members of my family who are easily overwhelmed by noise...the sound of a toilet flushing in a fairly small bathroom, the sound of thunder (this is a combination of anxiety and the actual noise itself), fireworks, pots and pans clattering...and the list goes on. It would seem that the common denominator in most of these is that they are noises that cannot be avoided. Where the shift occurs between "just noise" and sensory overloading noise is, again, in the ability to filter the noise out: this is where things shift occurs from just not liking a lot of noise and not being able to tolerate that very same noise.
When the flushing toilet causes one to cover their ears and thunder requires noise-deadening headphones, problems with noise jump to a very different level, especially when this happens every single time: from order to disorder.
Just a few thoughts for the day.
Have a great one!
Heather
Sunday, October 14, 2012
Sensory Awareness Month Post 8: Free Falling
It's Sensory Awareness Month! Some thoughts on free falling.
I am not a thrill-seeker by nature. I have never felt the need to drive like a maniac, go skydiving, ride the worlds greatest, highest, fastest roller coaster over and over, go bungee jumping, climb the highest mountain or dive to the greatest depths of shark infested waters. It just is not how I am wired. This is not to say I am a complete nervous Nellie...it was during one of my infrequent pseudo-daredevil endeavors that I had a little glimpse into the challenges Riley faces as a result of his unpredictable vestibular system.
The vestibular system is what directs the sense of balance and awareness of body placement in space. During a family trip to Hershey Park, I was convinced to ride on one of the many coasters (it didn't roll...it hung from a track up top). The first ride was fun despite hanging from a seat with nothing surrounding me. It was enough of an adventure that my arm was twisted to go again. A member of our party persuaded me to wait a few extra turns to ride in the front row...sure...I was feeling fearless...wasn't I?
To make a short story a little shorter...the whole front row thing? A complete NIGHTMARE!!! My legs were hanging, I was held in by nothing other than a bar and I swore I was going to hit every tree and pole that flew at me. Logically I knew I would be fine, but the sense of total lack of control and pretty much free falling at the whim of some designer of thrill seeking rides did me in. I got off the ride, never to return.
When we first started working with our Early Intervention team when Riley was eighteen months, one of the first things that caught the attention of the various therapists was that Riley was not really affected by his surroundings, positively or negatively, with one exception: the second I put him on a swing, he screamed bloody murder. Once his Sensory Processing issues were identified, the reason became clear: with his vestibular system out of whack, he felt like he was free falling while on the swing. He could not accurately identify where his body was in space or how his body worked with itself.
Armed with this knowledge, many other things in Riley's world began to snap into place. The most obvious struggle was when he was learning to walk. He had the skills and could walk as long as he was holding onto something, but he did not trust himself to let go of the couch. As it turned out, with the vestibular challenge element in place, he did not realize that if he let go of the couch, that he would not fall off the floor. The example given to me was that of a clear table: he could not tell where the table ended and where the floor below started.
With the help of some amazingly talented and caring young women, we learned how to help Riley find the boundaries of his body through deep "input" (lots of massage and deep pressure along with all kinds of other crazy and offbeat therapeutic techniques that, strange as they seemed, worked incredible wonders for our son), lots of time and lots of patience.
Eventually Riley found some stability in his mobility and he learned to work within the confines of his body and his world. The process included many bumps and bruises...a fall down the stairs...a face plant here and there...but we all survived his toddling years and lived to tell about it. There is still some clumsiness, but he works through it...trudging along, day by day. In some ways, perhaps he kind of free falls through his days, but he definitely is learning control.
Until next time....
~Heather
I am not a thrill-seeker by nature. I have never felt the need to drive like a maniac, go skydiving, ride the worlds greatest, highest, fastest roller coaster over and over, go bungee jumping, climb the highest mountain or dive to the greatest depths of shark infested waters. It just is not how I am wired. This is not to say I am a complete nervous Nellie...it was during one of my infrequent pseudo-daredevil endeavors that I had a little glimpse into the challenges Riley faces as a result of his unpredictable vestibular system.
The vestibular system is what directs the sense of balance and awareness of body placement in space. During a family trip to Hershey Park, I was convinced to ride on one of the many coasters (it didn't roll...it hung from a track up top). The first ride was fun despite hanging from a seat with nothing surrounding me. It was enough of an adventure that my arm was twisted to go again. A member of our party persuaded me to wait a few extra turns to ride in the front row...sure...I was feeling fearless...wasn't I?
To make a short story a little shorter...the whole front row thing? A complete NIGHTMARE!!! My legs were hanging, I was held in by nothing other than a bar and I swore I was going to hit every tree and pole that flew at me. Logically I knew I would be fine, but the sense of total lack of control and pretty much free falling at the whim of some designer of thrill seeking rides did me in. I got off the ride, never to return.
When we first started working with our Early Intervention team when Riley was eighteen months, one of the first things that caught the attention of the various therapists was that Riley was not really affected by his surroundings, positively or negatively, with one exception: the second I put him on a swing, he screamed bloody murder. Once his Sensory Processing issues were identified, the reason became clear: with his vestibular system out of whack, he felt like he was free falling while on the swing. He could not accurately identify where his body was in space or how his body worked with itself.
Armed with this knowledge, many other things in Riley's world began to snap into place. The most obvious struggle was when he was learning to walk. He had the skills and could walk as long as he was holding onto something, but he did not trust himself to let go of the couch. As it turned out, with the vestibular challenge element in place, he did not realize that if he let go of the couch, that he would not fall off the floor. The example given to me was that of a clear table: he could not tell where the table ended and where the floor below started.
With the help of some amazingly talented and caring young women, we learned how to help Riley find the boundaries of his body through deep "input" (lots of massage and deep pressure along with all kinds of other crazy and offbeat therapeutic techniques that, strange as they seemed, worked incredible wonders for our son), lots of time and lots of patience.
Eventually Riley found some stability in his mobility and he learned to work within the confines of his body and his world. The process included many bumps and bruises...a fall down the stairs...a face plant here and there...but we all survived his toddling years and lived to tell about it. There is still some clumsiness, but he works through it...trudging along, day by day. In some ways, perhaps he kind of free falls through his days, but he definitely is learning control.
Until next time....
Saturday, October 13, 2012
Sensory Awareness Month Post 7
It is Sensory Awareness Month!!! Today's post is a little different...but I'm killing two birds with one stone. My dear friend Brian Mengini has been working on an amazing book project about SPD for the last couple years. Rilely was actually one of his first "subjects" for the book and now his vision is coming together. He is an incredible photographer Brian Mengini Photography as well as the fath...
er of an amazing young man with SPD The DominicsDreams Foundation.
Brian asked that I write a little "blurb" for the book to accompany Riley's picture - so that is what I am posting today. If you would like to learn more about his project, visit his FB page: Portraits of a Disorder
Here you go:
Riley is an amazing little boy who has taught everyone around him that there are many ways to experience the world.
Riley’s journey with Sensory Processing Disorder began at birth, but his challenges were without a known cause until he was nearly two. The SPD impacts nearly every area of his life: he does not feel the sensations of hunger or tired, he does not process pain properly, he smells too much and tastes too little…and the list goes on.
Some of these challenges may not seem like that big of a deal until they are put in a human context. As an infant, by not feeling hunger, he did not care if he ate, resulting in a severe failure to thrive. As a result of not feeling tired, he slept very little, even as a newborn (approximately 6 hours a night with no naps during the day), so his body had very little time to shut down and conserve energy. Combined with very little food intake, he burned more “fuel” than he took in. The improper processing of pain was most obvious when he fell off a chair, cried for the first time in his life from pain (he was 4) for about twenty minutes and then went about his evening. The following day, Riley went to a birthday party at a climbing gym and played without complaint. Two days later, we decided we should probably have his arm checked out because he was guarding it, just a little. It turned out he snapped his arm clean through at the growth plate.
Through the years, we have worked with Riley to live around these challenges, but not ignore them. If he is injured, he must report the injury so the extent of it can be assessed by someone other than him. He must eat because he needs to grow big and strong. We have found a handful of foods that he will eat willingly and we just work with it. His diet is somewhat limited, but the lack of hunger means that forcing him to eat does not mean anything…threatening that he will go to bed without dinner does not mean anything…after all, he does not go to bed hungry because he does not feel hunger. As for sleep challenges, we have a bedtime routine and because it is just what he does, he falls asleep eventually and generally gets a pretty decent stretch, allowing his body to shut down and recoup from his busy days.
Our greatest challenge with Riley is to help him unravel the elements of his SPD so he can keep moving forward. For all of us, this navigation is an ongoing challenge. As he grows and evolves, his SPD does its best to keep pace with him and it continues to get in his way in new and create incarnations. Thankfully, he is a champion at pushing it out of his way and moving forward in spite of his challenges. It is a fun and exciting, albeit scary, journey to travel with our amazing little boy.
Brian asked that I write a little "blurb" for the book to accompany Riley's picture - so that is what I am posting today. If you would like to learn more about his project, visit his FB page: Portraits of a Disorder
Here you go:
Riley is an amazing little boy who has taught everyone around him that there are many ways to experience the world.
Riley’s journey with Sensory Processing Disorder began at birth, but his challenges were without a known cause until he was nearly two. The SPD impacts nearly every area of his life: he does not feel the sensations of hunger or tired, he does not process pain properly, he smells too much and tastes too little…and the list goes on.
Some of these challenges may not seem like that big of a deal until they are put in a human context. As an infant, by not feeling hunger, he did not care if he ate, resulting in a severe failure to thrive. As a result of not feeling tired, he slept very little, even as a newborn (approximately 6 hours a night with no naps during the day), so his body had very little time to shut down and conserve energy. Combined with very little food intake, he burned more “fuel” than he took in. The improper processing of pain was most obvious when he fell off a chair, cried for the first time in his life from pain (he was 4) for about twenty minutes and then went about his evening. The following day, Riley went to a birthday party at a climbing gym and played without complaint. Two days later, we decided we should probably have his arm checked out because he was guarding it, just a little. It turned out he snapped his arm clean through at the growth plate.
Through the years, we have worked with Riley to live around these challenges, but not ignore them. If he is injured, he must report the injury so the extent of it can be assessed by someone other than him. He must eat because he needs to grow big and strong. We have found a handful of foods that he will eat willingly and we just work with it. His diet is somewhat limited, but the lack of hunger means that forcing him to eat does not mean anything…threatening that he will go to bed without dinner does not mean anything…after all, he does not go to bed hungry because he does not feel hunger. As for sleep challenges, we have a bedtime routine and because it is just what he does, he falls asleep eventually and generally gets a pretty decent stretch, allowing his body to shut down and recoup from his busy days.
Our greatest challenge with Riley is to help him unravel the elements of his SPD so he can keep moving forward. For all of us, this navigation is an ongoing challenge. As he grows and evolves, his SPD does its best to keep pace with him and it continues to get in his way in new and create incarnations. Thankfully, he is a champion at pushing it out of his way and moving forward in spite of his challenges. It is a fun and exciting, albeit scary, journey to travel with our amazing little boy.
Sensory Awareness Month Post 6
It’s Sensory Awareness Month!
Today’s SPD insight: Oral Defensiveness. My inspiration of the day? A trip to the dentist.
Nobody likes to go to the dentist…you do it because you have to. When Riley was little, I tried and tried to get him to the dentist. Three times I took him with me. The first time he sat in the chair. The second time he held the equipment. The third time he let her shoot water in his mouth. That was it. When she asked him to open his mouth so she could take a look, he clamped down (thankfully not on her finger…but it was close!).
Eventually we found a pediatric dentist who specializes in kids with special needs. They were able to get a cleaning during the first visit…but it was an ordeal. They had a bite guard to protect their fingers that also forced his mouth open. We covered him with an x-ray blanket for the added weight (adding extra weight at his core helps to focus his energy inward as well as giving him a better sense of his body placement) and, last but not least, they actually had to use what they called “soft restraints”…it was actually a soft straightjacket that bound his hands so he could not continue to be combative. Thankfully, this process has gotten easier over the years…for him and for me.
Now a little back story on why this happened. From the day he was born, Riley struggled with putting anything in or near his mouth. He refused a bottle and had difficulty nursing. As a result, he had a severe failure to thrive. We spent a very long time working with feeding clinics, specialists, every doctor imaginable…their answers? “All kids eat…you must be doing something wrong…” and “we cannot find anything medically wrong with him.”
When Riley was 18 months old, we brought in a team from Early Intervention. Part of this team was made up of an RN who specialized in feeding issues and challenges. During her first visit, she told me that Riley appeared to be very “orally defensive”. In short, he fought anything going directly into his mouth. He was better if it was approached from the side, but it was still difficult. We will never know if it hurt, tickled, or just felt weird…but the front area of his mouth was hypersensitive to any touch or input. It actually bothered him when he was forced to eat…and I wasn’t a) a bad mother, or b) completely crazy!
This amazing woman started teaching me strategies to help him get the process of eating started by overstimulating his mouth so that “normal” feeding actions felt more acceptable rather than irritating. It was a slow process, but it definitely made a difference.
Again, this is an example of Riley’s brain not sending his body messages in a way that is typical or expected. It was also one more thing that we had to figure out how to help him live with and around.
If any of this sounds familiar, there is a great book out called: Just Take a Bite.
Have a great day!!!
Nobody likes to go to the dentist…you do it because you have to. When Riley was little, I tried and tried to get him to the dentist. Three times I took him with me. The first time he sat in the chair. The second time he held the equipment. The third time he let her shoot water in his mouth. That was it. When she asked him to open his mouth so she could take a look, he clamped down (thankfully not on her finger…but it was close!).
Eventually we found a pediatric dentist who specializes in kids with special needs. They were able to get a cleaning during the first visit…but it was an ordeal. They had a bite guard to protect their fingers that also forced his mouth open. We covered him with an x-ray blanket for the added weight (adding extra weight at his core helps to focus his energy inward as well as giving him a better sense of his body placement) and, last but not least, they actually had to use what they called “soft restraints”…it was actually a soft straightjacket that bound his hands so he could not continue to be combative. Thankfully, this process has gotten easier over the years…for him and for me.
Now a little back story on why this happened. From the day he was born, Riley struggled with putting anything in or near his mouth. He refused a bottle and had difficulty nursing. As a result, he had a severe failure to thrive. We spent a very long time working with feeding clinics, specialists, every doctor imaginable…their answers? “All kids eat…you must be doing something wrong…” and “we cannot find anything medically wrong with him.”
When Riley was 18 months old, we brought in a team from Early Intervention. Part of this team was made up of an RN who specialized in feeding issues and challenges. During her first visit, she told me that Riley appeared to be very “orally defensive”. In short, he fought anything going directly into his mouth. He was better if it was approached from the side, but it was still difficult. We will never know if it hurt, tickled, or just felt weird…but the front area of his mouth was hypersensitive to any touch or input. It actually bothered him when he was forced to eat…and I wasn’t a) a bad mother, or b) completely crazy!
This amazing woman started teaching me strategies to help him get the process of eating started by overstimulating his mouth so that “normal” feeding actions felt more acceptable rather than irritating. It was a slow process, but it definitely made a difference.
Again, this is an example of Riley’s brain not sending his body messages in a way that is typical or expected. It was also one more thing that we had to figure out how to help him live with and around.
If any of this sounds familiar, there is a great book out called: Just Take a Bite.
Have a great day!!!
Sensory Awareness Month Post 5
It’s Sensory Awareness Month! Here is the Sensory Awareness Thought of the Day…
“I hate yogurt…it grosses me out!”
“I hate yogurt…it grosses me out!”
Chances are, you know someone like this. If it’s not yogurt, it may be cottage cheese, oatmeal, avocado, pudding, kiwi, strawberries, watermelon…the list goes on and on and on. That said, is it really the taste that the individual does not like? Or is it the texture?
Taking this a step further, is it even the actual texture, or how it looks…a “visual texture” of sorts? Grainy, gritty, gooey, lumpy…the best flavor in the world may never be tasted by some sensory sensitive individuals because of how the food looks. If they can get past how it looks, even if they love the flavor, they may not be able to get past how it feels on the tongue.
The Sensory Challenge of the Day: think about foods you and/or your sensory sensitive family members do not like and then think about why you/they do not like them. If it looked different but tasted the same, would it make a difference? If it felt different, would it make a difference? If someone cannot get past the grit of strawberry seeds but can tolerate a strawberry smoothie, what does that tell you?
Have a great day!!!
The Sensory Challenge of the Day: think about foods you and/or your sensory sensitive family members do not like and then think about why you/they do not like them. If it looked different but tasted the same, would it make a difference? If it felt different, would it make a difference? If someone cannot get past the grit of strawberry seeds but can tolerate a strawberry smoothie, what does that tell you?
Have a great day!!!
Sensory Awareness Month Post 5
It is Sensory Awareness Month!
Sand and Grass: Friends or Foes?
Sand: I love walking barefoot on the beach…the feeling of sand between my toes, embracing my feet with each step, or resisting movement as a result of the wave that just packed it down. Warm dry sand, cold wet sand…I love it. My son with sensory challenges? Not so much. He feels every grain. The very shift in sand that I love creates an unstable platform for his feet. The shift from soft dry sand to packed wet sand does not make for an interesting walk…it makes for an unpredictable walk.
Grass: When I was growing up, my grandfather had the perfect lawn…golf course lush, creating a cushiony carpet under my feet. I loved running on it with bare feet. These days, I don’t enjoy walking on grass in bare feet – perhaps this is part of my sensory “stuff”. It feels weird and itchy on my feet…so it is no real surprise that Riley does not like to walk in the grass with bare feet. The individual blades of grass creating unpredictable feelings on his feet, the potential for squishy dirt or mud hiding underneath…quite simply, there are just all kinds of things out of his control.
In many ways, sensory processing challenges can be better understood by looking at a typical situation with an alternative perspective. A beach is not an expanse of land covered with sand, it is an environment made up of a zillion individual grains of sand with the occasional rock, shell, stick and trash mixed in. A backyard is not just a lawn; it is a collection of blades of grass with a few weeds thrown in on a dirt canvas.
Here is your Sensory challenge of the day: take a look around your world and choose a place or situation that you typically take at face value. Now attempt to assess this place or situation from a different perspective using a more critical sensory approach…
Good luck!
Sand and Grass: Friends or Foes?
Sand: I love walking barefoot on the beach…the feeling of sand between my toes, embracing my feet with each step, or resisting movement as a result of the wave that just packed it down. Warm dry sand, cold wet sand…I love it. My son with sensory challenges? Not so much. He feels every grain. The very shift in sand that I love creates an unstable platform for his feet. The shift from soft dry sand to packed wet sand does not make for an interesting walk…it makes for an unpredictable walk.
Grass: When I was growing up, my grandfather had the perfect lawn…golf course lush, creating a cushiony carpet under my feet. I loved running on it with bare feet. These days, I don’t enjoy walking on grass in bare feet – perhaps this is part of my sensory “stuff”. It feels weird and itchy on my feet…so it is no real surprise that Riley does not like to walk in the grass with bare feet. The individual blades of grass creating unpredictable feelings on his feet, the potential for squishy dirt or mud hiding underneath…quite simply, there are just all kinds of things out of his control.
In many ways, sensory processing challenges can be better understood by looking at a typical situation with an alternative perspective. A beach is not an expanse of land covered with sand, it is an environment made up of a zillion individual grains of sand with the occasional rock, shell, stick and trash mixed in. A backyard is not just a lawn; it is a collection of blades of grass with a few weeds thrown in on a dirt canvas.
Here is your Sensory challenge of the day: take a look around your world and choose a place or situation that you typically take at face value. Now attempt to assess this place or situation from a different perspective using a more critical sensory approach…
Good luck!
Sensory Awareness Month Post 4
It's Sensory Awareness Month! Today's Sensory Awareness Challege is actually....A Tale of Two Little Boys!
Once upon a time there were two little boys in Mrs. Blue's First Grade Class. These boys sat at different tables (Mrs. Blue had her desks grouped into tables of 5 or 6) and were both very bright little guys who might be well described as...exuberant.
At recess, these boys both played hard - climbing, jumping, running in circles...doing what little boys do. In line, both boys constantly had a very difficult time keeping their "bodies in check" and keeping their hands to themselves (then again, most first graders do, right?). During class? well, that's another story!
Mrs. Blue was at the end of her very patient, always wanted to be a teacher, rope! These two little boys wiggled, and fidgeted and jabbered, and got up, walked around, distracted their peers....and she was constantly having to repeat, "sit down, concentrate, keep your hands to your self, stop fiddling...stop fidgeting...stop stop stop" (although I was told in a fabulous parenting class that kids do not hear the words "don't, stop, and no"..."stop running in Wal-Mart" is pretty much permission to run your little tails off versus, "walking feet"). In short, these two boys had respectively become "that kid".
During parent/teacher conferences, Mrs. Blue was told by both sets of parents their boys were going to go on medication for their "impulsiveness" (such a politically correct word for...my kid is out of control and I don't know what else to do...I can joke about this as my kid is on meds for "impulsiveness"). Mrs. Blue was thrilled and could not WAIT to see how the two little guys responded.
Within a week, one of the boys became a completely different student! He sat at his desk, he completed his work neatly and completely. He stayed on task. He kept his hands to himself...quite amazing, really. The medication allowed him to simply be a better participant in his own life.
The other little guy? Not so much. No change. Nothing...nada! The parents switched to another brand of medication...nothing, nada. Then...on a fluky whim, a friend of his mom saw a FB post on “this sensory stuff”. Thinking that an awful lot of these things sounded pretty spot on for this little guy, she did a cut and paste of the post and emailed it over to the little guy’s mom. Mom immediately jumped on this and started doing some digging about various sensory processing challenges – at her wit’s end, she was open to ANYTHING!
After some reading and researching, she sat down with her little guy and started asking him some questions about what was going on with him in class. During the conversation, things that never would have occurred to her as problems started to come up. Here’s what she found out:
1. There’s a weird bump on his chair and it feels like it’s poking him all day long, so he can’t sit still.
Once upon a time there were two little boys in Mrs. Blue's First Grade Class. These boys sat at different tables (Mrs. Blue had her desks grouped into tables of 5 or 6) and were both very bright little guys who might be well described as...exuberant.
At recess, these boys both played hard - climbing, jumping, running in circles...doing what little boys do. In line, both boys constantly had a very difficult time keeping their "bodies in check" and keeping their hands to themselves (then again, most first graders do, right?). During class? well, that's another story!
Mrs. Blue was at the end of her very patient, always wanted to be a teacher, rope! These two little boys wiggled, and fidgeted and jabbered, and got up, walked around, distracted their peers....and she was constantly having to repeat, "sit down, concentrate, keep your hands to your self, stop fiddling...stop fidgeting...stop stop stop" (although I was told in a fabulous parenting class that kids do not hear the words "don't, stop, and no"..."stop running in Wal-Mart" is pretty much permission to run your little tails off versus, "walking feet"). In short, these two boys had respectively become "that kid".
During parent/teacher conferences, Mrs. Blue was told by both sets of parents their boys were going to go on medication for their "impulsiveness" (such a politically correct word for...my kid is out of control and I don't know what else to do...I can joke about this as my kid is on meds for "impulsiveness"). Mrs. Blue was thrilled and could not WAIT to see how the two little guys responded.
Within a week, one of the boys became a completely different student! He sat at his desk, he completed his work neatly and completely. He stayed on task. He kept his hands to himself...quite amazing, really. The medication allowed him to simply be a better participant in his own life.
The other little guy? Not so much. No change. Nothing...nada! The parents switched to another brand of medication...nothing, nada. Then...on a fluky whim, a friend of his mom saw a FB post on “this sensory stuff”. Thinking that an awful lot of these things sounded pretty spot on for this little guy, she did a cut and paste of the post and emailed it over to the little guy’s mom. Mom immediately jumped on this and started doing some digging about various sensory processing challenges – at her wit’s end, she was open to ANYTHING!
After some reading and researching, she sat down with her little guy and started asking him some questions about what was going on with him in class. During the conversation, things that never would have occurred to her as problems started to come up. Here’s what she found out:
1. There’s a weird bump on his chair and it feels like it’s poking him all day long, so he can’t sit still.
2. There’s a chip in the linoleum under his desk and his toe keeps getting “stuck” in it.
3. His desk does not line up with the rest of the desks in his group.
4. He has a very hard time writing with the yellow pencils that have “flat strips” instead of the round ones they used in kindergarten.
5. The girl next to him fiddles with the zipper on her sweater all day long and he can hear it.
6. His desk is close to the door and he can hear the other kids going up and down the hall all day long and it’s hard to concentrate every time the door opens and closes.
7. The shoes he got for the beginning of school make his feet feel like they are being squished and he really hates wearing jeans because the waistband rubs funny on his tummy.
8. The noise in the cafeteria makes him feel like his head is going to explode – he liked kindergarten so much better because he got to come home and eat lunch.
9. The big kids on the bus make so much noise that by the time he gets to school, he has a tummy ache and feels like he is shaking all over.
Armed with this information, Mom met with an occupational therapist and together, they built a “Sensory Diet” for her little guy. In addition to a variety of sensory activities and strategies to do at home to help our young friend get “neurologically organized”, the OT suggested some easy changes to implement in class: new chair, different desk location, round pencils, wearing sweatpants, sitting at a table closer to the edge of the cafeteria instead of right in the middle, sitting at the front of the bus…easy stuff…HUGE difference.
Within a couple weeks, Mrs. Blue could not believe the difference in the little guy. He arrived at school with a much calmer demeanor, he completed his work, he engaged with his peers and STAYED IN HIS SEAT! The rest of the year was successful for both boys, Mrs. Blue and the class at large. All said…it’s first grade, nothing is perfect, but what a difference!
The moral of the story? Not all “impulsive” little boys (and girls) have ADHD/ADD. When meds do not work, the problem may well be something that can be helped by popping a pill. Sensory Processing Disorders/Dysfunctions are real! The brain does not or cannot organize information properly and the cacophony of input creates “noise” that cannot simply be tuned out. The information needs to be redirected and “organized” in a way that helps the brain process the information in a way that makes sense.
Sensory Awareness Month Post 3
Sensory Challenge of the Day: Visual Filters.
Have you ever looked down from the window of an airplane and watched the movements of a city below? The parallel that is generally drawn is that the people and cars look like ants. On the ground, people go about their lives, walking to and fro, generally keeping to themselves...in a little bubble, so to speak - but in order to keep this "personal space...", they filter out many of the people and much of the environment around them.
Imagine not having the inherent ability to filter out your environment - that every person, every sound, every smell, every movement...this is the world that many individuals with SPD endure. The first time I really put it in context with Riley was at Hershey Park while waiting in line for lunch. The line was set up by using the ropes that created a zig-zag pattern. There were people all around him, all going different directions...and he went bananas. He was in a stroller at the time, but even that could not protect him from the visual assault of the movement and noise coming at him from every direction. I'm sure it did not help that he was lower than most others so everything was bearing down on him...but with a better awareness of SPD, I realized that he couldn't just tune it out - his "tuner" didn't have a, "not paying attention to you" channel.
Your challenge today: if you are in a busy or hectic environment, pay extra attention to all the things you automatically "tune out" and see how much more overwhelming your world would be.
Sensory Awareness Month Post 2
It is National Sensory Awareness Month! Today's Sensory Reality Check: Individuals with sensory challenges overprocess or underprocess "input" to their personal space. They are unable to filter out things that most of us never even notice...things like seams in their socks...so here's your challenge of the day: imagine a length of rough jute rope inside your socks rubbing along the toes all day long...every day.
Sensory Awareness Month Post 1
It is Sensory Processing Disorder (SPD) Awareness Month! Throughout the month I am going to post random sensory challenges to help you better understand the world individuals with sensory processing difficulties live with each and every day.
Today's Challenge: Replace the tags in all your clothes with a piece of sandpaper. One of the reasons individuals with sensory challenges get so distracted by things like tags in their clothes is that their body does not properly filter out information/input that the rest of us take for granted. Personally, I never feel the tags in my clothes, but what if I did? That each and every day, my entire day was spent with something rubbing against my neck and waist to the point of distraction? Would it be difficult to concentrate on everything else? Probably.
Tuesday, October 2, 2012
Insomniac in Suburbia...Suburbiac?
Ironically, my insomnia this evening brought me right back to my days of mommying tiny ones.
It is 3:00 am, I am wide awake, and rather than sit staring aimlessly at the ceiling, I decided a cup of tea might be in order.
As I waited to the water to boil, I looked out my kitchen window down the bowling green that runs between my home and others in the neighborhood. For the first time I can remember, I see no other lights on. Granted, over the last nine years trees have grown up and landscaping has taken hold, but even if kitchen lights are not visible, when the children were younger, there was almost always a glow from a bathroom nightlight or a hall light left on "just in case", or, more often than not, a bedroom light softly enveloping the room as a sleepy mommy nursed a tiny one or soothed a restless sleeper. It appears the trees are not the only things in this neighborhood that have matured over the years.
When we moved in to our dream home, in a not-quite-rural but with an almost country vibe area of suburbia, my baby was not even a year, the Princess was three, and the oldest was newly eight. One of my favorite parts of the community was then, as now, nearly all of our neighbors had children in the same age range. There were a small handful a couple of years older, and there were many who came after, but for the most part, ours ran, or toddled, or crawled, right in the middle of the pack.
Over the years, I have watched these runners, toddlers, and crawlers shift upright, then walk or peddle with the freedom of running to a neighbors house unattended, to watch them leave for the bus with an eye roll to the tune of, "Mom....puh-leese! You don't have to walk me..." to *gulp* driving his girlfriend to their first day of school their junior year.
Alas, with my slightly tearful walk down memory lane, my tea is finished, perhaps sleep will decide to be my friend...I'm off to bed...mornings come early these days.
It is 3:00 am, I am wide awake, and rather than sit staring aimlessly at the ceiling, I decided a cup of tea might be in order.
As I waited to the water to boil, I looked out my kitchen window down the bowling green that runs between my home and others in the neighborhood. For the first time I can remember, I see no other lights on. Granted, over the last nine years trees have grown up and landscaping has taken hold, but even if kitchen lights are not visible, when the children were younger, there was almost always a glow from a bathroom nightlight or a hall light left on "just in case", or, more often than not, a bedroom light softly enveloping the room as a sleepy mommy nursed a tiny one or soothed a restless sleeper. It appears the trees are not the only things in this neighborhood that have matured over the years.
When we moved in to our dream home, in a not-quite-rural but with an almost country vibe area of suburbia, my baby was not even a year, the Princess was three, and the oldest was newly eight. One of my favorite parts of the community was then, as now, nearly all of our neighbors had children in the same age range. There were a small handful a couple of years older, and there were many who came after, but for the most part, ours ran, or toddled, or crawled, right in the middle of the pack.
Over the years, I have watched these runners, toddlers, and crawlers shift upright, then walk or peddle with the freedom of running to a neighbors house unattended, to watch them leave for the bus with an eye roll to the tune of, "Mom....puh-leese! You don't have to walk me..." to *gulp* driving his girlfriend to their first day of school their junior year.
Alas, with my slightly tearful walk down memory lane, my tea is finished, perhaps sleep will decide to be my friend...I'm off to bed...mornings come early these days.
December 2003
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August 2012
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