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!

Living in the Land of the Hearing..

So, my husband got his new hearing aids last week and while I know that the one will not help him entirely to hear, I've found myself shocked at how well these new ones work for him!

He still asks me "what" a lot of the time but, he can actually hear me!! The first time in 9 years and it is bizarre. I've found that over the years whenever we would get into a disagreement, I would mumble under my breath with my head turned and felt quite comfortable knowing that he could not hear me. He still can't hear me exactly but, he can hear that I've said something...whoops! :)

I've found that since our oldest son has gotten aids that I have become painfully aware of how much I made them both live in the hearing world. Making no accommodations or being forgiving when their hearing didn't jive with how I perceived the world. All I saw was my burden of having to answer the "What" all the time or having to go to every conversation that my husband would have, every doctor's appointment, etc just to retell the whole conversations all over again. I always had to be within arms reach of the phone as no one else ever heard it ring. I suppose I could go on and on with "burdens" but, as I said, I've become painfully aware of all that they've had to endure from the d/hoh end.

They both couldn't go anywhere without me because neither one of them could hear people. Neither one of them wanting to ask someone more than once what they said. Not to mention that people looking away as they spoke made it much harder for them. So, they both became reliant upon me to relay communications, even between each other.

My voice especially happens to fall within a range that is hard for them to hear as well. So, my ever growing frustration with having to repeat things, always have to be around one or both of them, having to rely on someone else to do phone calls, drive thru window orders, etc with a voice that neither of them could hear very well...I can't imagine the frustration.

I've taken my time now to lower the tone of my voice and raise the sound of it, to face them when speaking and make sure that my stepson does as well. I still turn down the TV now when they are speaking on the phone, out of habit and courtesy. I still am there for every conversation, meeting etc but, the need for me, is less. It is a nice feeling!

While I am glad that they are hearing better, though I often wonder about DW's as he still asks "what" a lot, I have come to realize what a hearing world often asks of it's d/hoh members. So, instead of making my husband and oldest son live in my world, I am endeavoring to live in theirs. It is a novel idea to say the least and with DW and his TS+ it is still not easy but, I am giving it a hearty go!

*Though when your son turns to you and says, "if you don't start being nice, I'm going to shut my ears off", it may not be a good sign! :)*

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.

Had a moment...

I wish I was one of those moms who could switch the diet and he was miraculously better. Since he has Sensory Processing Disorder though, and oral issues are a BIG deal to him, that is not possible for him. I wish that he didn't have ALL that he does and that medication hadn't become necessary.....I could list my wishes all day long I suppose.

The other day, it just got to me a bit. I have those times when I look at my son, his tiny, skinny little body. The same body that we're fighting to keep above a certain weight line so he will not be diagnosed as failure to thrive again at almost 6yrs old, the same little body that now seems so fragile compared to other kids his age and it becomes a bit much.

I got him up this morning, put on his feet and ankle braces, checked to make sure his hearing aids were cleaned and put them on, mentally reminding myself to call his audiologist to see if we can get a new mold for his left ear. I went to the kitchen to get his meds. I grabbed the medicinal syringe as always, opened the Vyvanse capsule and dumped the contents into it. I carefully split his Inderol and crushed it, putting it into the syringe. I pulled out an additional pill for him to swallow. Filled the syringe with the Periactin. I got the Intuniv out and sat it next to the Inderol pill. I got out the new medication, Abilify and carefully put it next to his other pills to swallow.

I got his juice, his pancakes and headed to give them to him....I saw my little boy, sitting there happily watching the Disney channel. Looking content, his Ironman braces peaking out from under his jeans and over the tops of the shoes he must wear all day long. I saw his hearing aid light flash from behind his ear, to let me know that they are still functional. I felt the weight of the tiny pills in my hand and mentally counted the four medications to make sure that I had not forgotten everything. Realizing that I was only missing the Trazadone, which is his nightly medication to help him sleep, the thought crossed my mind to remind myself to call the doc again as the Trazadone was once again going to need to be increased. He just adjusts so fast to his medication.

Then it hit me, my tiny little man, with the aids, the braces and his two Blue's Clues pillow/dolls next to him, was taking four medications this morning, two this afternoon and two at night, five in total. My sweet DW was going to be taking all this. It broke my heart.

Holding back tears, I gave him his juice first (yes there is an order, there is always an order to things with him), then I emptied the syringe, handed him the "blue oval", the the "blue round" and then the new bluish pill. Thinking that most kids would object to yet another thing that they have to swallow. Instead, my sweet angel looks at me and says "why do I have a new blue one?" I tell him that it's been here just had to adjust his other meds before we could give it to him and it's to help him with being angry and feeling upset sometimes. I don't dare mention that it is to help you not panic when we throw things in the trash, like wrappers, bad food, etc. This will always cause a panic attack in him. My brave little guy, just looks at the pill and says "ok". No real hesitation, no fit, no nothing. I was so proud of him and then a little saddened as I realized that this is just normal for him. That it is like putting on socks or changing your shirt.

I am very thankful everyday as things could be much worse but, sometimes, days like today, it gets the best of me and I have these moments where the tears are just too much to hold back. To look at YOUR little one and see all that they are doing, have to do, all that they endure, no matter the disorder, I don't think that it is ever easy.

I have finally done it!

It's a long story really how I came by this decision for me and my oldest son but, I finally legally am doing it!!



I now find myself a wee bit scared, excited nervous but, hopeful that this will work for him. After all I have been doing it since he was two years old. I only did it then though because I knew he was ready AND I quite literally ran out of things to teach him.


I know, you're saying teach him?? lol That's right this post is nothing tawdry or salacious, it's simply me openly affirming that I'm jumped headfirst into the homeschooling world!


I wasn't left with much choice in the matter really.


DW, who has TS, ADHD, OCD, SPD, ODD, etc...was born incredibly bright. Not just my momma pride bragging either. By 1yr he was speaking in complete sentences and not only speaking clearly but, using the words properly. By 2yrs he was talking in paragraphs, using bigger words than he should’ve for his age and even going so far as to correct our grammar or pronunciation if he noted something was said wrong. lol By 2 in fact, I ran out of what normal parents teach their child. He knew all the ABCs by sight, he knew how to count to 20, he knew all his primary and expanded colors, he knew all the basic shapes and then some, he even was doing 24 piece puzzles unaided! He was hungry to learn so, what was I going to do?! Sit and say my job is done? NOPE! I gave him what he wanted, he wanted to learn some Spanish, I taught him the little bit I remembered from ESL teaching back in high school. He wanted to learn writing his ABCs so I started teaching him. He wanted to know all about tornadoes, thunderstorms, etc. So, we bought books went online, etc. By 3yrs old he was cruising the internet like he'd been born with a mouse in his hand.


So, when he was placed into a special needs pre-K, I thought he would excel. He did too. In fact, he did so well that he became bored in class and his inattentive behavior became worse, he was more withdrawn having no challenges in class whatsoever and he began to get into trouble more and more. The thing he was going to school for, sensory issues and learning to socialize properly, was now going backwards. The school district cutting his OT and cutting it. He was withdrawing from class because of noise, his inability to hold still becoming more and more an issue. His TS tics becoming louder and more disruptive. It just became a nightmare for him and for me. So, I pulled him from it last year but, still it was only a preschool. The same preschool, he'd been attending for almost two years. No big thing really.




I chose to do this because:


A) he is at a mixed level. Half of him is at a Kindergarten level and the other is at a 1st grade level (Science and Math).


B) It is unfair to the other students....according to the school district, to make some of the accommodations DW might need. Such as a chewy device when he begins to chew on his writing utensils or clothes, a small yoga ball to sit on when he can't hold still so he can complete his class work, etc. While I was highly irritated at these kinds of responses, I understood their point.


C) As he's getting older, his tics are now more frequent, louder, a bit more aggressive and obviously, a bit more distracting to other students. His attempt to hold them in during public outings leads to explosive episodes when he gets home. That look more painful and are sad to watch.


So, when I decided to homeschool him. I did so because it would best suite him and his needs. Not from some idiotic, twisted need to keep my son with me at all times, as some naive people would have you believe! Believe me, it would be soo much easier if he were in school 8hrs. I would only have 1 child to focus on and run after. lol


I look forward to this year with some trepidation....worrying about whether there will be issue since he's special needs, worrying that the bad times will be REALLY bad, etc. I also look forward to it all! I remember as a child having to college level scores in reading, science, etc. I remember the boredom, intolerance and frustration of having to wait for everyone else to "get it". Even in the G.A.T.E. (Gifted and Talented Education) class, it was still more of the same. Waiting for us all to get on the same page, I remember just being aggravated all the time! If I'd had ODD and ADHD, among other things, I can't imagine how those years would've gone!


So, offering him the freedom to go at his own pace....slow down when and if he needs it or speed through something he finds child's play, is my gift to him. I know that he will not always appreciate that but, I know what it would've meant to me. I also know that it will allow him the freedom to be himself and I can't imagine a greater joy!


Wish us luck!

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!

New medicine - again and a good day.

So, we tried another medicine to help lessen DW's tics. It was along the same lines as the last but suppose to be less as strong as the first or something like that. Within 48 hrs the same thing began to happen. He began to wet himself and by the next day, he again had diarrhea and this time, there was more than a speck of blood in his stool. So, we stopped it yet again. Not sure why though but, even though he's not taken any of the for more than a few days at a time and hasn't taken any in almost a four days now, they seem to have affected his tics. So far in a positive manner!

The blinking that he's had for years, the kind that contorted his face constantly, all day....it's very rare to see it now! Even on a down swing, this is the one tic that never went away, it was almost painful to watch even, his whole face would contort. In the last two days alone I can count the number of times I've seen it on two hands and feet, which is amazing. The HARD, sniffing and hiss breathing is so mild, that I don't even notice it unless I'm looking for it. He has gone from several dozen tics a day to just a handful!

The one that is probably the most annoying to everyone else though is the repeating thing. For example, today he said: "hey mom, I think we need that. Yeah I think we need that." or "I want nuggets for lunch, yeah nuggets for lunch". Seems to bother his cousins and stepbrothers more than me for some reason. Maybe it's hearing near silent grunting, no terrible sniffing that sounds like his head might pop off, no loud hissing after the sniffing, and loud triple grunting following all of that in less than thirty seconds. His tics are softer now, not OCD like - needing to be in groups of three or fours, they are random and mostly not back to back even. I don't really know if it happened from the meds or if it will last even. It could be just a big coincidence but, I will take the reprieve. Even DW seems a bit happier as his tics are not running rampant and wearing him down.

He's even taken to realizing that he cannot hear properly. So, instead of repeatedly asking us "what" a hundred times. He now walks up to us and asks us to repeat what we've just said. Which is nice for him and myself. His cousins had a time adjusting to his hearing today as they've not paid him much attention before but he told them he's getting hearing aids and they asked me why. We talked a little about what DW can and cannot hear. Which also led to a discussion about why Dathen repeats and what a tic is. So, it was a good afternoon for everyone.

So, for now, it's back to the drawing board for the tics but, I can wait. For right now, he seems ok and that is all I ever wanted for him. We'll also keep a positive attitude and hope that this lasts. :)