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!

Our lives with OCD

We all hear people say it, "I'm so OCD," or "I've got OCD". They all say in jest, heck even I do myself and a bit of a personal thing, I actually do have OCD!! So, do my sons, both of them! When you think of OCD, your typical response is to think of organizational people. The ones with their cans all facing forward in their cupboards, their towels all lined up evenly on the rack, the drawers all organized with clothes folded perfectly or their closets color coded. Yes, to some degree this is OCD and to others it's just functional. For me, with my cans in my cupboard, and the items in my fridge all label forward, it is OCD. Though I have managed to understand that nothing bad will happen if they are not facing forward, I can still feel anxiety creep in if I leave them askew!

So, what is OCD? 
OCD is a neurobiological anxiety disorder (often genetic in nature) that significantly affects 1 in 40 adults and at least 1 in 100 school aged children.

Obsessions are defined as uncontrollable, persistent worries, doubts or fears that significantly impact normal life. They create unbearable anxiety and often times the person feels compelled to perform rituals or activities  (aka compulsions) to relieve the anxiety.

Compulsions may be either physical or mental rituals that are done over and over and over again in an attempt to control or relieve the anxiety the obsession causes. This is always temporary and just ends up reinforcing the original obsession.

For children with OCD though, like ASD (autism), SPD (Sensory Processing Disorder) or even TS (Tourette Syndrome), it is a spectrum disorder. Most of us have some OCD-ish issues but, you can rationalize that your 'urge' is irrational and move on. Those with OCD honestly feel like something bad is going to happen.

Personal experiences: 
OCD is often recognized in adults and some older kiddos but, for a small few, the signs are evident at an early age. For example, my oldest son, took to hand washing at a whopping 2yrs old. His little brother has just started it at 3 (in case you wonder, he didn't learn it from big bro because, big brother hasn't done it since before little one was born). DW became obsessed with having to put things back EXACTLY in the same spot that they were taken from. Which sounds great but, heaven help you if you were on the way out the door to go somewhere and there is more than one thing out of place. Don't get me started on taking him grocery shopping!! If someone (a stranger) put something back wrong, the whole store knew it! Then he had to "unwind". Which meant that if he crossed in front of you entering the room, he had to cross back on his way out. Or if he walked around the right side of the van to get in, he had to go back the exact same way to go back inside. He started to need things in his bed just so, to get to sleep. I could go on but, I will spare you the whole long history of how his OCD progressed. Keep in mind this is all happening at 2yrs old.

I'm aware that there are naysayers who will say that this is "learned" behavior. I'm here to tell you that they are dead wrong. Ask any geneticist, they will tell you hands down, it is genetic and the child cannot pick what their OCD focuses on anymore than you can change the color of your eyes. I've heard, "well, you have OCD, so they must've learned it from you"....DW's issues, AND JD's obsessions are NOT mine at all! For example, DW became a hoarder! No joke when I say this, he would panic if you threw out old food, old containers, papers, etc. I even have a friend whose son kept and hid toilet paper....toilet paper used for #1!!! JD, he's obsessed with different things than either DW or I have even considered. JD can't have anyone's things away from them. For example, if you come over and set your purse and coat on my table, he will bring them to you. If you sit them next to you and then follow me into the kitchen for snack, he will bring your coat and purse to you again and again and again. He will not stop! It has worn out many a guest here. He is also obsessed with having flat surfaces, completely bare. Which sounds dandy but, imagine walking into a room everyday and finding the bookcase shelves completely bare. Or every child's bed unmade daily. He also tends to panic if you take a different way to go to and/or from a store or relative's house. Keep in mind that he is only 3yrs old and though DW and I both have OCD, our "issues" are not like his. The ones that JD expresses that are or were similar to DW's are things that DW has long since worked through. So, he'd never seen DW do them.

Common Obsessions/Compulsions: 
Contamination fears
Fear of acting on bad impulses, i.e. harming another, insulting another, being the cause of harm to another, etc.
Perfectionism
Washing/Cleaning
Mental compulsions (or as we call them in our house, mental hiccups)
Skin Picking
Trichotillomanina (hair pulling)
Hoarding
Checking
Repeating

Other Conditions related to or in conjuction with OCD:
OCD can come alone or in cohorts with another condition such as Tourette Syndrome, Asperger's, ADHD/ADD, Anxiety Disorders, depression, etc.

What to do as parent of a child with or suspected of having OCD? My first bit of advice as an adult with OCD, do not wait to get help! Tell your child's pediatrician that you suspect OCD. Take them into a mental health staff member and have them evaluated. If they poo poo you, remember: You're the parent, they work for you! Doctors are great resources but, they are not the be all end all to all medical and psychological information! Remember that the earlier they get help, the easier it will be to overcome it. So, if they stonewall you, get a second opinion. I say this to everything from Asperger's, to SPD! Do what is right and fight, kick and scream for your child. I didn't have to do this to get them help with their OCD, it was that obvious but, I have met parents at their wits ends because their child's doctor kept telling them to wait it out or having a kid who wants things put away is a good thing. Just listen to your gut, you know your child first and foremost! If you're in need of more information or support, a great site that offers you a lot of resources, information and a super supportive FB page is, International OCD Foundation.

The point of this rather long post today? Again, instead of glaring at that woman whose hair is sticking out in odd places, whose eyes look a little panicked, who may look on the verge of tears and is managing the best she can, with the screaming child in tow, try offering her a kind word instead! That may be the thing that helps her get on with her day with a renewed spirit.
Instead of glaring at the child for something that they can't quite grasp isn't "normal", try to look at them through a new lens and not with contempt.

Life for a Mom with one HoH Child and a Communication Impaired Child

I know I've been a bit absent lately, life is completely insane anymore but, in all new, good ways! So, in some ways I'm back! :) I've decided to ease in slowly to getting this blog up and running by copying a few things I've shared on my other blog about once a week. With Tourette Syndrome awareness month fast approaching and Autism awareness month closing soon, I just wanted to share some thing for those who have no experience or no knowledge of various issues. I am not THE authority on these things, these are just my experiences with them...

There is no way around sharing bits and pieces of my life and leaving out why I homeschool or why I have OTs (occupational therapist) blogs, or SLP (speech language pathologist) links to share. So, in honor of my children and the many special needs families out there, each week I will feature a "special needs" issue that some families are dealing with, mainly things that my family has experience with. I also will be featuring various links to places that have helped us to work with or around one or more of my boys' own issues. As the numbers rise of children with one or more neurological disorders. I feel it's something that we need to address and include in our lives. Maybe learn enough about to be able to help each other out. I hope you'll come along for the ride! I promise to still share and post as I always have but, Tuesdays, they're for eye opening experiences that can bring all of us together! :)

This first, I am going to share some things on communication. In a house with a Hard of Hearing/deaf child and one who exhibits signs of Auditory Processing Disorder, I've had to learn my way around pretty fast and not always in the prettiest manner! I am by no means an expert on anything, I just want to share some posts from some very great places that have helped us along in our journey. These sights were good for DW who has a little trouble with hearing certain letters or sounds and they work well with JD who, well he's just all around hard to communicate with period, though he's made some amazingly HUGE strides just in the last year alone. Please note, that both of my boys are in OT, PT and JD is in ST (speech therapy) so, these sites didn't just do all the work!

First up is Speech Time Fun. I loved her two tap lights idea! Her suggestions and printables just add to feel of this exercise! It's a really neat thing to try, even if you can't get them to do the part where you record their own voice. It's still a fun thing or the kiddos to do with the tap lights!

*If your kiddo has a SPD (Sensory Processing Disorder with or w/o autism and has an aversion to white, you can always paint these. Just be careful to keep the paint out of the crevices. To change the light color, I used tissue paper and colored tape to cover the dome. *

Another great resource is Testy Yet Trying. There are a bunch of great printable cards to help your kiddo articulate the particular sounds. Though if you check out the blog itself, there are a myriad of other printables, games and ways to help your kiddo maybe learn to begin to communicate!

As a homeschooler with a preschooler who is obsessed with being homeschooled (I love these years!),  this site is a BLESSING a lot of the time. LiveSpeakLove is a great site that has so many printables and activities for you and your child to try! This one here, I cannot wait to try with the little guy!

This next site works well for my boys. My oldest, computer obsessed kiddo it works for practicing his blends, something he seems to have some trouble with on occasion. That being said, Reading Fun was awesome for teaching the preschooler his colors, patterns and a few other things too. It's a completely online group of activities for them to do by themselves or with you. 

If you have a special needs kiddo who...for lack of a better word has, "anger issues".....whether that is loosing it over the smell of fresh peeled oranges, or has tics so bad he/she rages out or because specifically their communication skills are behind, you know managing and trying to head off a meltdown is not easy. By a LONG shot! With my oldest son, he would get so upset so fast over something no one would see coming, he'd loose the ability to actually communicate that he was mad! Now, he's a VERY articulate young man, so it took everyone a while to figure out what was happening. We used a similar system from Speech Lady Liz! With JD, he just couldn't communicate period what his issue was so, for him, we did the faces chart. You'll find this great idea over on her I feel today post. 

If your curious about what sounds or letter sounds your child should be making correctly at what age, here is a great printable from Mommy Speech Therapy.

If you're concerned that your child is a later talker, here's a great post from Child Talk to give you some pointers. The best advice I can give is like a recent post I read, Repeat, Repeat, Repeat - everything as much as you can! If you've done all of these things, and you're concerned about your child's hearing, by all means take them in!!

If you find out that your child is Hard of Hearing or Deaf. It's really not the end of the world. I promise you that! A lot of people I knew growing up and have come to meet over the years are Deaf and PROUD of it. Truth be told, in some ways I envy the Deaf world! As a hearing mother I will never fully be a part of the deaf community but, I kind of get a hall pass on occasion! :)  Which is nice and the support you'll find within the community is.....overwhelming! It's truly an amazing experience and though as a hearing person, it makes me sad that my son will never really hear how beautiful the birds are, his life experiences will be richer and more complex at an earlier age than I could have ever known. So, don't be afraid to jump in with both feet, it's the one time I fully advocate jumping in without looking!

Here's a great starting point for you though, Hear My Hands has a great post to get you started. With information on ASL, the Deaf community, etc.

One of their resources listed there is ASL Pro. Let me tell you how awesome this site has been for me! You not only get to SEE how the hands/fingers move but, when I tell you that facial expressions can be paramount sometimes, I'm not joking! So, it's nice to see how the face moves with the sign. 

Another great site for trying to find support for you and your family is Hands and Voices. At least for me anyway, finding local support to help with my learning curve was invaluable! 

Sign language doesn't have to be just for the Hard of Hearing or Deaf kiddos. With my youngest, it enabled him to communicate where he couldn't do it verbally before. So, if your child has a communication issue and is capable of at least understanding sign, I'd give it a try. Another thing I can tell you, if your child is verbal or making noises and clearly wants to communicate, I'd try picture cards. I did this with JD and suddenly he could tell me what he wanted for breakfast, lunch and dinner. The meltdowns lessened and so I moved onto picture cards for his toys, clothes, etc. It was an incredible relief I think for him. 

There are probably hundreds more links, sites and advice out there and truth be told, I've been given so much over the last several years that I cannot remember it all. If you've got any sites, advice or ideas, feel free to share! I know I'd appreciate it!