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!

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

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.

Never back a mother into a corner

I usually keep my mouth shut during political conversations among friends and family. Everyone is entitled to their own opinion, even if they do not have all the facts. I will more often than not keep my mouth shut, unless it is directed at me or my children. I am a passionate advocate for Sensory Processing Disorder and Tourette Syndrome as they have invaded and settled into my life through my children. These are the two things I am most vocal about when not even prompted.

The last two weeks have ignited a fire in me that I have not known before. It's taken years to get diagnosis for DW and we are just starting to get some help for JD's issues. I finally felt like there was hope for my boys, we were getting somewhere.

I know that there are differing opinions on medicaid and why you or your children should be on it but, when you've a child with special needs who requires loads of different doctors, different meds that can run thousands of dollars a month as well as physical, occupational and/or speech therapy that can also run thousands of dollars, you really end up with little or no choice.


For the first time in ages, I finally felt like my boys were getting the help they needed. JD was starting to talk more, make more noises, attempt words. The SLPs think he might have Childhood Apraxia of Speech. Which takes several weeks, sometimes months of visits to figure out.

DW was getting OT 3x a week and was actually able to tolerate being in the room with certain foods. He was learning how to regulate himself and I was learning things to do to help him at home.

Things were looking up, or so I thought.

The state changed health insurance companies. Suddenly, my two year old who cannot even say momma nor mommy is denied speech therapy on the basis that because he does not have a brain injury or a specific disease responsible for the speech delay! So, what does this mean for his future? In order for him to be functional in life or his future, I have to dish out thousands of dollars I do not have to help him or I'm a failure as a parent?! I'm angry, very angry.

Then they cut DW's therapy in half too! He is full on in the middle of getting his aids and orthotics to fix his feet, ankles and knees and now I'm fully angry! What does this mean for him?? I spent two weeks on the phone with the insurance company and then corroborating with the therapy center. We got 8 OT visits instead of the recommended 12 a month, so it's a small victory but, JD is still shut out.

I'm not the only mother they've done this too either! Hundreds of kids are now without speech therapy and it is not ok and it is not good. So, several of us have banded together to get help, we've called, written to the state insurance program and contacted the local television stations. Given them interviews and are prepared to go all the way up the state chain of command and then to the capital if need be.

You can yank me around all you want but, this is our children we're talking about here! Never back a mother into a corner who is protecting her baby, they never back down!

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! :)