Our Life With SPD

Today we're going to address something called near to my heart, Sensory Processing Disorder. This is usually the main "symptom" of autism or Asperger's that most people see right off the bat. This does not encompass the whole definition of autism, nor does it mean that you have to have autism to have it.

Sensory Processing Disorder, from the purpose of this post, will be referred to as SPD. SPD like autism, is a spectrum disorder, and no two kiddos that have it are alike. I happen to have two kiddos with it and neither of them have this disorder in any similar function! SPD is a disorder where the  nervous system doesn't function or communicate properly with the senses of the body. I could go into depth on this but, this is the gist of it. You basically cannot process what your senses are telling you properly. Now, if you think about this, that can manifest in many ways! As I write this article, please know that there are so many different ways and combinations that it can show up in a person that I could not possibly include them all here. I will most likely include the ones that are personal to me and my boys.


When one thinks of senses, they generally think sight, sound, hearing, touch and taste. In actuality there are EIGHT senses! Yes, I know how to count! :D I know we all get the idea of the first five senses, so here's some brief info on the 3 you probably don't know about.

Vestibular is your sense of balance basically. It tells you if you're lying down, spinning, jumping, etc.
Interoception, this is how your body knows it's hungry, if it has to go to the bathroom or even if you're sick.
Proprioception, is the feeling in your joints and muscles that tells you when you're getting squeezed, catching a ball, etc.


Everyone has some sensory issue(s) but, some of us out there, have it to such a degree it impacts daily life! For example, my son had a HUGE aversion to the color white. If you were wearing it, he would start shrieking and carrying on. Socks may be an issue for a child with SPD. I know when I was a child, my mother and I seriously, physically fought over putting socks on my feet. To this day, I avoid wearing them at all costs. Why would one carry on like that over socks? I can't speak for other people and my boys don't seem to have this issue but, for me, the seam feels like a bunch of razor blades on my toes. To this day, the fastest way to get me really upset, really fast, is when my socks are not on right! :P For other kiddos and adults, it could be sounds. Some are set off by repetition of sounds, for some it's the pitch of the sound, for others, it's just sound in general. My HARD OF HEARING child would often times (And still does), cover his ears, yelling that we were all too loud! Let me tell you, nothing is harder to wrap your brain around than this! For others it's not being able to wear short leaves or only wearing short sleaves. Same goes for shorts and jeans as well. Don't get me started on oral issues...you think a neuro-typical child is a picky eater? Wait until you meet a child with SPD! Most with oral issues that I've met cannot eat mashed potatoes! No matter how watered down you make them! The choke and gag and you cannot figure out why! Some oral issues include licking or mouthing strange objects or continued mouthing, chewing or licking of objects, that is past the baby/toddler stage. For example, that piece of metal that normally separates hard wood floors from carpeting, chair legs, another person's clothes, Legos (not fun when they accidentally swallow them and they were to some cool set that you can't buy anymore!) and even their fingers or clothes are not safe! My nephew is the clothes chewer, he chews holes in his sleeves and collars. Drove my little sis nuts until I told her that he probably couldn't help it. Maybe it's none of these and simple things, like smells. Specifically normal smells, like the smell of fresh peeled oranges that sets a child off! Yes, one of my kiddos had this problem too! My oldest nephew though, swears his food smells and tastes different when the windows are open and it's chilly out. We don't notice this but, my son says he can smell the difference between hold and cold things too! So, who am I to argue! :) This covered sight, touch, sound, taste, and smell. On to the next three senses....

Proprioception manifests in ways like, your child can't stop jumping. Jumping on the floor, the couch, the bed, etc. He/She is a crasher. Meaning they're continually crashing HARD into you, walls, furniture, anyone else in close proximity! It's been joyously painful having two crashers! lol If your child had a vestibular dysfunction, they'd have a hard time staying upright a lot of time either because their balance would seem compromised or they don't seem to know where their body is in relation to anyone or anything else. If your child had interoception issues, they'd seem to forget to be hungry or eat period. Or maybe potting training was excruciating long because they didn't seem to know when they needed to go! (This is a fun one, especially with all the well meaning potty training advice friends, family and strangers seem to love to dole out!)

There really is no one size fits all diagnosis for SPD. In fact, a lot of kids may get diagnosed with ADHD because of their SPD! Especially if they have SPD and APD (auditory processing disorder). SPD can get overlooked a lot when the child has other neurological issues as well. For example, I know a lot of people who have TS (Tourette Syndrome) also have SPD but, because of either severity of tics or other neurological issues, the sensory issues will get overlooked.

If any of this sounds like a child that you know, here's a great checklist on line to investigate and see if they are just normal or if maybe you should contact an Occupational Therapist. If it's you or a teen you're curious about where they stand, here is the checklist for you. Again, for a firm diagnosis, you'll need to visit an OT to be evaluated for sure but, those lists will give you an idea of where you stand. With an OT and the benefit of proper therapy, they are doing the best they can to help, teach and rewire how our children's brains function - without drugs. Over time they can go from having to eat pizza with a fork to being able to eat with their fingers! Or from screaming at bath times or when they get to wet, to calmly being able to tell you that they need to change their clothes or being able to take baths without incident! It may take some time, it's not an instant fix but, the results can reduce you to tears! :)

Resources:
If you're newly diagnosed person or family, a great place for info though is SPD Foundation, they are awesome every October for SPD Awareness month at helping you start a campaign to do locally! If you're looking for others out there like yourself, the SPD Blogger Network is filled with all sorts of great bloggers who share their experiences parenting kiddos with SPD. There is a great community on FB called SPD Connect, and another page on there run by my dearest friend Ida, called Sensory Street. She will share every resource, and avenue she finds that you can try to help your child. There is Sensory Planet with an accompanying FB page. There are also many, many groups on FB just for SPD in general. Including Autistic Like. I've never seen the full movie yet but, he's one of the few fathers whose been at the forefront of the fight for their children. I'm behind Eric 110%!

For books, I have to recommend my friend Lindsey Biel's book, Raising A Sensory Smart Child first. Lindsey is an OT, so she knows her stuff and did I mention that like Ida, she's a really sweet woman; truly an awesome resource to have! She also has a site and FB page too! Another great set of books comes from Carol Kranowitz. One is called, The Out Of Sync Child and the other one is The Out of Sync Child Has Fun. The first book is on recognizing and understanding a bit about your child and SPD and the second is all about some fun things you can do at home to help your child adapt, learn and evolve through play. Another couple of good books is This is Gabriel: Making Sense of School by a wonderful lady, Hartley Steiner. Our fearless leader behind the SPD Blogger Network. She also put together a book by many of us SPD mothers, called Sensational Journeys. Filled with stories from lots of us mothers about having two kiddos with SPD, having premies, etc. All heart warming and told by real moms about their experiences, myself included! I would be remiss if I did not include Ms. Lucy Jane Miller's book, Sensational Kids: Hope for Children with Sensory Processing Disorder.

There are a lot of resources out there now. A ton more than a decade ago. There is no reason to feel alone, no matter who doesn't understand in your neighborhood, your child's school, your friends, families, etc. You are not alone and your child is as unique and beautiful as a snowflake, never forget it! And if you're that lady or guy in the grocery store giving the evil eye to the mom whose child is screaming his head off, think twice about what you're doing. They may not be able to help it!

My Blog Contribution is Up for the SPDBN!

My contribution for the SPDBN (Sensory Processing Disorder Blogger Network) is up today! I'm so excited. So, if anyone out here in cyber space wants a peek into the world of SPD, come over and check it out!

The Cold, The Hot and The Crunchy!

Sometimes you need a secretary

I love my boys' OT/PT/SLP place. For the uninitiated OT: Occupational therapy, PT: Physical therapy and SLP: speech language pathology. I love these women and think that they deserve so much more credit, rewards and acknowledgment than they get.

Today, after DW's OT and JD's OT/SLP session, the OTs came out to talk to me. Telling me that I need to start up brushing again, something that in the chaos of my life after JD was born, I'd kind of just phased out. This time I need to do it for both boys. Ideally she would like every couple of hours, which is where we were before but, as there are two of them, we homeschool and it's crazy, so she requested that it get done at least before every meal.

Ok, alright, I'm doing the schedule for the start of our upcoming school year anyway, I can work this in. Just need to remember that JD can only tolerate it over his clothes except on his feet. DW can do it bare armed, legged and back but, once you remove his braces, he has to have his socks on.....ok, mental note made.

She then said, as if it is nothing in addition to all that we've talked about (and it's not all noted here), back to joint compression for both boys, how many times a day I managed to forget to ask, though I know it is probably a few times a day as it was before. Another mental note made.

DW's OT comes out and hands me a paper. Both OTs have noticed that he was chewing on his fingers finally. Even though I have mentioned that he will chew them until they bleed. I explained that I had bought a bunch of chewies from a therapy shop online but, suddenly he's stopped using them. She tells me that this is a list of items that may help with his oral issues.

I got home and read the list and almost died laughing. Most everything on there he will not touch, use or smell! :D Out of at least 30 items on that list, it came down to pickles, lemon drops and gummy worms & bears. These are the only ones I can easily see him chewing on. Even the lemon drops are pushing it, I know he will surely suck on them but, biting into a hard thing, so far out of his comfort zone. :S

My only hope is that I've spent the better part of 2 weeks now convincing him to try bubble gum. He's still on the fence about it but, I know if I buy some and have it on hand now, he might decide to give it a go.

So, now I have calendar in every room of the house, one on my computer and have to buy a personal one now too. With notes for 3+ appts a week, therapies that need to be done daily, regular scheduled OT stuff that we do at home, like bed jumping, couch to crash pad, etc. homeschool schedule, other doc appts, etc. Notes on every calendar for things from therapies to be done at home to grocery lists - including the suggested items that came on the list, allergy free foods, etc. It might be overkill to some but, when you're life is as crazy as this one is, there is no lengths I won't go to, to be prepared! :D



I've decided that now I need a chauffeur and a secretary! :D

A Sense of Humor Can Always Save the Day!

So the truth is, that despite the emotionally heavy posts I sometimes lay down here, I have an extremely humorous personality. Though my sense of humor might be slightly warped! :D I have found humor can be the only way out of what can be a extremely heavy, stressful life.

Today is no exception to that rule!

We went to the audiologist's office, where the normal lady was sick. DW does not do new people so well....needless to say, this is where the whole morning went wrong! :D lol 


 First this audiologist managed to keep sticking the long, soft probe thing in the wrong place, over and over and over again. Which prompted the screams, tears and panic attack he subsequently had, that I had to talk him down from. He did well though! :)

SPD took over and he couldn't handle being able to hear out of both ears and begged for one aid to be turned down....

On the way out, he begins crying because he wanted to play with the bubbles because "he earned it" by having his ears hurt! lol

So, as I attempted to load the boys up in the van afterwards, DW still crying because he wanted to play with bubbles and then be checked into the playroom on the way out, JD is freaking out because he wanted to push  every button on the elevator and then go up stairs to another level of hospital. Here's your daily funny:

As I looked around at the situation, standing outside the back of Boys Town National Research Hospital. A parking lot full of cars and people coming and going, security giving me the evil eye, JD has put himself in timeout IN THE MIDDLE of the parking lot! lol DW is dragging his feet and crying and of course, my frizzy hair is flying with reckless abandon in my face, mocking me.....I took stock of the situation and the stares and then did what any good mother would do!
I sat down in the middle of the parking lot and cried loudly too!!  Minus a little bit of the pride I have left, the kids stopped crying and I felt a little better! I don't recommend this for the faint of heart though! I mean I didn't really cry but, mostly pretended to have a loud fit. :D Still, it was highly effective!  


What dispelled the tension and frustration for a time though, failed to hold the mood for long. JD's SPD rearing it's ugly head and now the car seat doesn't feel right, he is yelling and screaming. He wants out and he wants out now. DW is yelling because one of his biggest Sensory issues is getting wet and while trying to get everyone in the van it had started to rain and he now feels a wet spot on his shorts......


At a loss and a point where I could again to choose to really cry OR I could choose humor to get through, you bet your bum I chose to find humor. :) I hollered out, "that's it, we're going and we're going now!" Which prompted them to look at me waiting for me to finish. I did not. I simply backed the van up and drove away. Sitting in silence as the boys seemed bewildered and uncomfortable, I flashed back to when I was little and my mother used to do this. 


It was always THE worst of days. We were out of control, she would be crying and/or yelling or very close to it. She would either not cry and yell or pull herself together and march us to the car without a word. If we asked where we were going, which I was waiting for DW to do, her reply was, "we're going crazy"! lol So, I waited for DW to ask and my response was the same. Only instead of going to the Dairy Queen, as this was our "going crazy" spot but, my boys are milk protein intolerant, we arrived promptly at Runza, where insanely instead of hitting the drive through, I removed them from the van and marched up to the entrance proudly with the two loves of my life. Where believe it or not, we had an amazing time! :)  

Scary times and how we've dug our way out, Part 2

So, one night on the full vitamin regimen with probiotic I didn't think we'd see a single thing.

We were all sitting in the living room playing and watching a little TV when DW comes over and says, "I'm hungry".

We were stunned! I promptly got up and ran to get him food. As I may or may not have mentioned previously, he never knew when he was hungry!! I had to practically argue with him to get him to eat or drink!

The next day, he told us again that he was hungry. He drank a full 8 oz of fluid and by the end of the day, he hit 12 oz.!! This is not a lot in the grand scheme of things but, it was closer to 20oz than he'd been in weeks. For the first time in weeks, we were hopeful that we could keep him from the hospital!

Within four days, the minimum fluid intake was 12 oz. and closing in on 20 oz a day! He went from barely eating enough food to qualify as one meal to closing in on 2 meals a day! To top it off, he quit asking for all his "cheese" foods! Which prompted me to remove milk/casein from his diet on the third day.

That was a rough one because he acted out badly as his little body detoxed for a few days.

After two weeks, he dark purple circles under his eyes, I would come to know as "allergic shiners" disappeared completely! His skin went from grey and very pale white to a soft, porcelain, peach color! He was laughing and smiling! His eye contact which we'd worked so hard to maintain and had promptly disappeared was back!! His meltdowns dropped to almost nothing! He still had them but, they weren't at the level they were before!

Let me explain, if you've not had a Tourette Syndrome child or an ASD child, you'll not understand when I say "rage episode", it does not begin to cover it! There are tiers to rages in TS children or so I am told by the neuro. Rage being the first one, ODD (oppositional defiant disorder) being the second and the third is rare and it is called Explosive Behavior Disorder. This last one is where DW fell into. When he would have an episode, as we call them, he would break windows, tear his bed and bedroom apart, charge the bedroom door over and over again like a linebacker, which would always break where he hinges met the doorframe! This from a little 5 year old! He would hit, kick, bite, scream, etc. Children with EBD grow up to become wife beaters, in jail more often than not for assault! This was the lowest point in this whole journey for me!

So, to see these episodes drop to the level and lower even then when we first added medication to treat them, it was a miracle!

He still tics, especially when stressed or when he can let go at home, after being out are still there but, he went from not being able to finish a sentence, beating himself over and over again to barely having a noticeable tic! I know that there are down times but, even his down times were exhausting to watch! So, to see them just drop so drastically....again all I can say is miraculous!

His anxiety level over his OCD issues and Sensory things, while still there, have also dropped dramatically!

That's not to say that he doesn't have his days or his tics don't explode now and again but, the change simply from the vitamins, which prompted the removal of milk, has made a HUGE change in our lives!

For the first time in years, I have such hope for his future!

Scary times and how we've dug our way out, Part 1

I know I've not really written a lot here lately....life has taken some crazy turns as of late!

DW's tics, rages, and any other behavior had gotten completely out of control. All the progress we'd made with various medications for his ADHD behaviors and anxiety seemed to just dissipate. His tics became increasingly violent and out of control. His functional abdominal pain took on a life of it's own again. He began to eat less and less, which led to drinking less and less. Since he has small kidneys and we were warned at birth about keeping an eye on them, this whole thing was really starting to scare me.

He began to turn grey and extremely white, dark purple circles under his eyes were now very common to see daily. He was at the bottom, very bottom, of the weight chart and there was talk from the doctor about taking medical action to stop his weight loss even. Already at the 5th percentile for his age group before all this began, the thought of how much he weighed before Christmas was making me sick.

He began to ONLY eat macaroni and cheese and want nothing else! Which having done some nutritional studies six years back when he was first diagnosed with MSPI, I knew could mean only one thing. That at 2 years old when all doctors and specialists reassured me that all kids outgrew their MSPI, they were wrong! I had learned some time ago that sometimes in certain intolerant or allergic individuals, they can become addicted to or crave the one food they are allergic to. So, my son repeatedly asking for macaroni, ice cream, etc. was a huge warning sign to me. Only, at this point, I would give in because some calories are better than none, right? If anyone has a child like this, we all no, that they will go days without eating if pushed too! I know, he's done it!

Right before Christmas I had resigned myself to the hospital stay I knew was inevitable. I was trying to figure out in my head how I would manage two children, one at home and one there. DW again, a very anxiety ridden child would not handle me being away from him, even for short periods of time. His father and him barely got along, so that would add more stress. JD would not understand what was going on and though I know that there are times he understands what I tell him, I'm not sure he always gets it and this would be one of those times.

Needless to say, I was almost beside myself, crying myself to sleep every night, begging, pleading for some miracle to happen. Every morning I'd wake though and it would all be the same. I was desperate and ready to try anything at this point.


Then a lady whom I've come to have much respect for, made a simple suggestion that would change our whole world. Ida, is a wonderful woman who works for and with Sensory Processing kiddos and their families. She had suggested putting DW on a LIQUID vitamin and probiotic. He already got a gummy vitamin because this was the only kind he could handle so I didn't see how a liquid would matter but, it turns out it would make all the difference in the world and lead to some more changes in our lives that so far, have been truly amazing!

Part 2 and pic heavy! :)

Well, as you can tell, my well meaning "every day" post didn't happened! Instead everyone got this cold that won't go away, Thanksgiving came and went as did my oldest son's birthday! He is six now, where has the time gone?!

So, in honor of his 6th year here I will share the rest of his story.

Where was I....oh yes, we were in the hospital, our third stay with him thus far. May I just say that this was 6 years ago and understanding of MSPI, though it's not a common diagnosis overall, was still in it's infancy. It is more common in the heartland of the US than anywhere else in the world! Does that say something about our diet?!

Anyway, let me tell you what the treatment for MSPI was back then around here. It was an order to stop breast feeding. It was putting my son on an IV ONLY for 48 whole hours. An IV of just clear liquids, they contain no calories, no real sustenance at all. Just some vitamins and electrolytes. So, for two whole days I had to hold a starving baby and somehow pray that his hunger; his tummy pains would go away. I prayed that his weight loss would not be too terrible too. As he was already severely underweight.  Then we tried one formula, only allowed to give him mere ounces ever few hours. Again, having to watch your child starve is not an easy thing to do. If the formula did not take you would know as the SCREAMING would start, and there would be blood in his stool. So, you would again have to go back to nothing but an IV for two days on a child that was already starved.

During this time he was also diagnosed with reflux. And began medication for it.

We got to our third formula and he seemed to be adjusting well or maybe I convinced myself because watching him suffer for two days with no food, it was almost unbearable. He was not screaming though, he was not fussing all the time and when he was I couldn't blame him, being as hungry as he must've been. So, after about a week and a half of this we were released to go home. Where I just thought, hoped, prayed that all would be ok. We were released under the primary care of a gastro-intestinal doctor. A pioneer in reflux and MSPI research. The best in the region. We were to check in weekly with weights and any concerns.

So, we did just that. Checked in weekly with weights, that were not getting any bigger and every so often loosing an ounce or two. I would call with concerns of his stools and the doctor would reassure me that this stools were normal for an MSPI baby. Since no formula is entirely clear of milk or soy proteins, this was how their diaper was to look. I was still a new mom and though the voice in the back of my head told me otherwise, I ignored it. Thinking doctors know best.

Almost a month to the day, I was changing his diaper and found yet again, blood in his stool. Back to the hospital we went. This time, he'd dropped a lot of weight since his last visit and though he was near 4 months old, he was still in newborn clothes!

This visit was different. There was an air around the nursing staff, who'd now been around him for his whole life, that worried me.

Remembering that time is hard for me, for many reasons. One, it is severely emotional for me, knowing that this is the visit, he could've died.. Two, because though I would hold him for hours on end, attend to his every need and play the mother role to a T, I still was not emotionally attached to him. Which as a mother, makes one feel very terrible. I know now that this was because of all that was going on with him, the emotional toll on top of having a new baby, struggling with hormones and my new roll. Never really being allowed to bond with him as a normal mother would. I understand that this can easily account for why I didn't fully bond with him but, the guilt of it, still kills me.

For months after he came home and the months he was in the hospital, I had refused to call him by his name. Instead choosing to call him by some nickname I'd made up for him. Afraid that if I'd say his name, somehow that would make him more real and hurt more if he didn't make it.

So, the last visit, was terrible for everyone that knew him, knew us and for my family. It was days of IV starvation, and this time he was put on an NG feeding tube and pump. NG meaning nasal gastric, which simply means that it went down his nose, throat and into his tummy. He was hooked to a 24/7 pump, which automatically pumped the prescribed amount of formula into his tummy.

This was the worst thing ever. He went from 2 days of IV starvation to quite literally, drips of formula into his tummy per hour! Single drops!!! The increment increased every few days until the symptoms would start again and the cycle of starvation would begin again. I say this though, as if the simple drips were sustaining him. The truth is, even with the drips, he was starving; he was dying.

Every time they would try a new formula, it would only be days before we'd have to start again. All the while, his diapers were increasingly disgusting and worrisome. He began dropping weight at an alarming rate and considering he had very little to work with, it began to take it's toll on his body. He lost the ability to cry first, replaced instead by this, pathetic sounding whimper. A sound that will haunt me for as long as I live. He then lost the ability to lift his left leg, followed by his arms and other leg and then the ability to hold his head up. His skin began to hang off of him. His face began to resemble that of a skeleton. Even now I tear up at the thought of it.

Right before the day he lost enough weight to hit 8lbs even, a mere 5 oz over his birth weight, the pediatrician stood his ground and took over the case. He came to me and told me that they could do a surgical procedure and put a port into his tummy for a direct line but, that they didn't think he'd survive. It was my choice though. He told me to have him baptized just in case. He listened to me about the stools and did a test. It came back that he had C. Diff. Don't ask me the proper name for it, I can't even say it, let alone spell it! I chose to forgo the port and stick with the NG tube but, most importantly, when the pediatrician asked if I trusted him enough to take over, I let him. I had nothing else to loose and watching my son starve to death was becoming more than I could take.

He was put on a regime of strong antibiotics. And since we'd finally found a formula he could tolerate, the pediatrician increased the ridiculous drips over the course of several hours to an ounce every few hours. The next day when he hit the 8 lbs though, I remember dropping to my knees in the hall outside the room. The nurses held me up and held onto me. I refused to go back into the room though. I didn't want him to see me crying to think that I'd given up on him. Even though I'd secretly prayed that if someone upstairs was going to take him, then take him now so he would not have to suffer. Something like that is incredibly hard to do as a mother, attached or not to your child. To get to that point, it's heart wrenching and even now, as I type this, the tears pour down. I would never wish that on any mother.

That was the worst part of the whole thing, over the course of he next few days the formula was increased, he began to stop loosing and weight and maintaining it. He started to smile and act a bit like a baby should.

When he finally began putting on ounces, we were allowed to take him home, once again reassured that this would be his last time there.

Here is his first day home, playing with his snack tray in his carseat. That toy was the only thing he would attempt to play with! Still weak, he would swing his right arm over the spinning snail and watch it spin.

 Below is a picture of him the very first time I put him in the crib that had patiently waited months for him to sleep in and still would for many more. His NG tube set up did not allow him to sleep in the crib. He was hooked up 24/7 so he could've gotten tangled up in and choked to death if not put someplace safe.

Another month later, still small as can be and in summer clothes. This was a big deal to me as I never liked to let people see him like that because they would stare.

He was almost 9 months old when he yanked the tube out on his own for the last time. He was chubby and healthy then.

He's not been without his struggles, Sensory Processing Disorder, OCD, ADHD, Tourette Syndrome, Explosive Behavior Disorder, anxiety, hearing loss, etc. but, he's come through it all! There is not a day that goes by, even on the days with meltdowns that I don't thank the heavens that he is here with me. I don't take one smile, laugh, milestone, etc for granted and I hope I never do. He's gone through all of this, all that life has thrown at him and he's still here. He's fought tooth and nail to be here.

This is him now! My adorable, cheesy, hard to handle, sweet, kind, exhausting, funny, smart, wonderful little 6 year old man!

Other than being a bit small for his age, you'd never know. Never. On the days when I cannot get myself to look on the bright side, when getting out of bed seems to be too much to do, when I do not want to do another IEP, specialist or doctor's appointment, I think of all he's gone through, all he will and I get off of my pity pot and just do it.

An SPD Holiday Giveaway!

I have written here once before about Sensory Processing Disorder in the hopes that some passing people would find it, learn a little something, research, ask questions and share what they have picked up.

Today I am writing about it purely for selfish reasons! :) If you know anything about SPD, you've probably become familiar with Hartley's Life With 3 Boys. If not, it's a SENSE-ational blog which not only inspires special needs mothers of all walks of life but, helps to make us not feel alone, misunderstood and crazy. It also has served as an amazing platform for spreading the word about SPD and the daily and life challenges this disorder can bring. Today, she is partnering with Soft Clothing to have a 1st annual Holiday giveaway!

There are 2 Grand Prizes that will be given away. One for boys, one for girls and will each include the following sensory friendly items, (which focus on fine motor development, dramatic play skills, sensory integration, creative expression, auditory exploration):

Quilted Train Stocking from Pottery Barn Kids (boys prize)

Quilted Angel Stocking from Pottery Barn Kids (girls prize)

This is Gabriel Making Sense of School, by Hartley Steiner (That's me!!)

SPD Awareness Calendar (for sale at http://www.sensoryplanet.com/)

Glitter bouncy ball from Pottery Barn Kids

Alex Finger Crayons

Tangle Textured Jr

AKU Sensory Ring

Melissa and Doug Jumbo Paint Brushes (set of 4)

Melissa and Doug Deluxe Fuzzy Make your Own Monster Puppet

Wonderland Eco Friendly Rainbow Sound Blocks

Mood Therapy Putty

Soft Seamless Sock 2-pack

One complete Soft dressy look for girls OR

One complete Soft dressy look for boys 

So, if you know of an SPD kiddo, by all means pass this along! Click here to enter the giveaway!

Sensory Processing Disorder

If you're like me, your response is what?

The first time I heard SPD in it's full name, I had no idea what it meant. I had never heard of it before! It is a term that everyone should know. As of today, 1 in 20....that's ONE IN TWENTY children is affected by it!

It is a long explanation of what exactly it is. It is a spectrum disorder just like TS or Autism. It never affects any individual in the same way and what works for one child, may not work for another. So, if you are familiar with either of those disorders, then you know an explanation is a bit harder to give to someone. It is almost easier to explain what it is not!

It is not some twisted game a child is playing to get his or her own way. It is not a "behavioral problem". It is not an undisciplined or ill disciplined child. It is not a parent looking for an excuse as to why their child is behaving in such a way. I think that about covers all the normal reactions of those that have not heard of it or don't believe in it.

What SPD is, is a neurological issue. It is how these children's brains are wired. They have no control over it, it is just how they work. Some children are very mild and can pass through life with a few "quirks". Others are way more severe and require a lot of intensive physical, speech and most importantly occupational therapy.

Imagine if you can, having a day where no matter how dim it is outside, it feels like you've got a spotlight aimed at your eyes. That no matter the level of sound, it is like someone is talking to you through a bullhorn all day. On top of that, your clothes feel like wool on your skin, itchy and scratchy. You cannot turn down the volume, you cannot change your clothes and you cannot dim the world around you. At the end of most likely 20 minutes or so, an average adult is at their wits end!

This is how an SPD brain works. Only it encompasses a myriad of other sensory issues besides, hearing, sight and touch. It includes where their body is in the environment, how their body feels while in motion or still, how things feel in their mouth, not just taste, their sometimes extremely sensitive sense of smell. It all ties in together.

For my part in this explanation, I have 2 boys with SPD! Funny enough the complete opposite of each other's issues! DW is mostly a sensory avoider with seeking behavior and JD, my youngest, is the one who doesn't register much of anything with seeking behaviors, poor coordination and some delays.

The first time I knew something wasn't quite right with DW he was only 3 months old. I realized that unless he was being rocked, in a swing or some kind of constant motion, he would not sleep. Then when he was finally into stacking blocks, he had to always do it by color. Cars had to be lined up in a row. He would not by a year and older walk on the grass. He began to choke on mashed potatoes!! No matter how watered down they were. He could not eat if he had to touch the food. He could not be fed with metal utensils or he'd just not eat. Chicken nuggets became a no no, too many crumbs in his mouth and forget about him touching them! He was unable to actually wash his hands in water but, could take a bath just fine. Noises did not bring out the best in him, which always struck me as funny because he's been loosing his hearing little by little since birth. By 3yrs old, I knew enough was enough. He'd stopped napping completely before he hit 2, he was now LITERALLY spinning all day. Or jumping all day, or running LITERALLY from one end of the house to the other, ALL day!! If these seemingly odd things at the time, were not met with and cut off at the pass, he would loose it. Taking him out of the house was even worse, he would constantly complain about the lights in the stores and how they bothered his eyes. You had about 10 minutes tops before he would meltdown to leave. He would perseverate if we took different ways to and from the stores, a relative's house, etc. He began to have clothing issues, where tags, seams, etc where he would scream and cry that they were hurting him. The list is really endless but, needless to say that when this begins at 1yr old to me, this is not a learned behavior!!

JD, my youngest, it takes two people to change his diaper, he does not register where he is in the space around him most of the time, how his body moves. He does not register getting smacked in the head, sounds don't bother him in the least. He cannot seem to tell the difference between hot and cold. He will over stuff his mouth at every opportunity and not out of hunger. He would eat all day if I let him! So, he eats every couple of hours. He is constantly seeking input, needing to always be on the move. Again I could go on but I will spare you all the pain of going on and on.

To prove my point, that this a NOT a learned set of behaviors, my little sister used to introduce DW as "the most well behaved boy you'll ever meet"!! I am not a dictator but in the house, we have rules and discipline is a high priority. With a stepson who had ADD, there was just no other option. So, it's not like the kids have the run of the house. Especially when DW came up with TS, ADHD, OCD, etc. Discipline became the backbone to the house. That's not to say that we don't have our days and our life is perfect, far from it really. It is just show that it is not a foreign concept.

Another thing about SPD that most don't know, it is usually genetic. Though they cannot find the gene, or the marker. They cannot even see it on a brain scan but, it is noticed to run in families. For example, it does run in mine. Though back then, SPD was less well known my little sister and I had it. My little sis, could not handle the feel of jean hugging her hips, nor the feel of jello in her mouth. I would scream and physically fight with my mother at a whopping 4yrs old over my socks. The seams felt like razors across my toes. I hated the feel of the wind on my bare arms, and legs during summer but preferred to wear shorts inside, even during the winter. I could go on but, would be here all day. The point really is to show that this is not behavioral, it is not a learned behavior it is how people, these children are wired!

Lastly, the signs that people almost immediately recognize as autism are those of SPD!! It is not questioned then. When it comes with a comorbid condition like TS, ADHD, OCD, etc. Mothers and children have to fight to get the recognition that they deserve. They fight to get their children treatments, to get this recognized in some way by the insurance companies. Most of the time also battling friends, relatives, school systems and even strangers! People who maybe trying to help by offering their opinions and advice, who have never heard of it, who do not see what these kids go through daily and are going off what they know from their own limited experiences or lack of knowledge. The only thing that has shown to help children with SPD is Occupational Therapy. It can take years and a lot of DAILY intensive therapy to make progress.

For anyone that actually reads this post, we are now halfway through Sensory Processing Awareness month. I urge you to get online and research, ask a parent, talk to someone. Get informed. Do your part to pass on the information and knowledge.

Hello

So, I guess I should start my first blog by introducing myself. : )

Um, I'm a SAHM of two boys and stepmother to another boy, who resides in the most part with his mother.

My youngest son, now almost 2yrs old, has just recently been given the diagnosis of CAS: Childhood Apraxia of Speech.

My oldest, will be 6 at the end of November, has sensorineural hearing loss (genetic in nature), TS (Tourette Syndrome), ADHD, OCD, SPD (Sensory Processing Disorder), anxiety disorder, etc.

The oldest, DW, is in OT and PT 3 - 4 times a week. JD, the youngest has just finished his first week in ST. He goes 3 times a week. He will need PT and will be getting qualified for it sometime next month. DW sees a psychologist once a week to help with the TS/ADHD rages and OCD issues. He also has a neurologist and developmental behavioral pediatrician that he sees monthly or bi-monthly. He has a geneticist, an ENT (specialist in cranial facial surgeries and issues), a GI doctor and his regular pediatrician. Then you throw in JD's hearing tests every 3 - 6 months and life in our house if usually revolving around therapy or doctor's appointments!!

DW was first diagnosed with SPD at just under 3 years old. OCD was the diagnosis given to him at age 3 as was ADHD. By not quite 4 the tics we'd spent the last two years, chalking up to sensory issues, allergies, etc were undeniably not coming from those issues. The sniffing, blinking, odd breathing noises, constant tugging on his clothes, arm/shoulder jerk, swiping at his nose, etc were no longer mild or in anyway dismissable.

That was our life. Full of meltdowns, medications, various therapies. Then came the dreaded audiology exam. DW's father and grandfather has familial sensorineural hearing loss. So, when as a baby, there was a VERY mild problem in certain tones, it was no surprise. This year's exam though...showed that bilaterally his hearing loss was mild and in some areas, came close to being moderate. It was my choice to do hearing aids or not....when they let me hear how he hears, it was all I needed. He's being fitted for molds next week.

JD has just started his ST therapy a week ago. So, the CAS diagnosis is also new and added to the hearing loss that DW has, it's worrisome. JD's hearing exam was inconclusive in the lower tones, which gives me no comfort.

So, now we add yet another chapter to our lives. Another layer to this crazy cake. It is devastating, it is hard, it is crazy, it is full of tears but, it's priceless, the moments where the light shines in is blinding! It is full of laughter and silliness as you learn to never take a thing to seriously.

I'm just hoping I can hold on tight enough and NOT mess up! :)