Our Favorite Sensory Diet Ingredients

Around age 2 both girls were diagnosed with Sensory Processing Dysfunction. Abby has always been a sensory seeker of the highest proportion. We always thought that as time went on it might be reduced, but that has not been the case. On the other hand, Grace tended to be more of a sensory avoider. As she has gotten older she does MUCH better with texture and even crazes it to some degree. 

What has always astonished me is how much better both girls function when we pay attention to their sensory diet needs. I thought I would put together a list of some of the items that are must haves on our sensory diet list. 

The Gymnic Movin' Sit Inflatable Seat: This little powerhouse has been sat upon by almost every hynie in the house. I must admit on particularly hyper days even I can be found swaying to and from to keep my attention level up. Abby get a lot of input from the dimples, but Grace and I enjoy the ability to move while you sit. Costs just over $30 so a great buy. 

 

Z-Vibe: Although the Z vibe finally died in our house after 6 years of use, it is a great tool for kids whose sensory needs involve the mouth. For us, that was both girls. Abby used to stuff her mouth and her OT suggested that we use this to give her input before she ate. It did a great job at minimizing stuffing and creating feeding awareness. Grace avoided certain textures so we tried this before she ate things she usually avoided. It helped us get her to eat yogurt and smoothies, but she still won't eat anything with lumps like oatmeal. 

 

Chewy Necklaces: At nine years old I still often find Abby wearing one of her many chewy necklaces. They beat the heck out of fingernails or sleeves for kids who look for input by chewing.  

Chewy Tubes: In that same vain we have an entire bin (I kid you not, a bin) of various chewy tubes that have been collected over the years. Abby's absolute favorite are the P's and Q's, probably because I can attach them to a necklace.  They are inexperience and can be thrown in the dishwasher to keep clean. 

Raising A Sensory Smart Child: This book was just about heaven-sent to a Mom who had never heard of SPD before the day both of her kids were diagnosed with it. There is a book and a cool guide to activities, both of which I loved and used frequently. I highly recommend you invest in both!

Weighted Blankets: Abby has always been a terrible sleeper. When her OT suggested a weighted blanket it almost sounded like a form of child abuse. Little did I know this well known sensory secret is a must for sensory kids who struggle to sleep. Both girls used them from about 3 until 6. Abby continued to use hers until she outgrew it last year. That being said I am considering buying a larger one for her to use now. 

Please excuse the shameless Amazon plug here, but that is truly where we ordered all of our sensory products. There are some great companies out there selling awesome products but when buying for two kids with two different kinds of needs Amazon fit our budget. 

Ill fitting clothes

You know how you know you're child has ADHD??? When you have to buy specific (expensive) underwear that don't bunch, ride, move, itch, scratch, lump or bump. That's how. It's pretty bad when her underwear cost double what mine cost.

It isn't easy... dealign with the little parts of a diagnosis like ADHD (or so many like it). You know about the big stuff. They are more energetic. They tend to be louder and more boisterous. They have a ton of energy. They have a hard time sitting still or paying attention. But there are parts that many people don't realize.

Do you know that they have a tendency towards anxiety disorders? Do you know that many kids with ADHD or similar diagnoses have "tantrums" to the point of screaming, puking, harming themself, etc? DO you know that they often can't wear most clothes or shoes because the discomfort it so overwhelming they can't function?

I didn't... until I was faced with raising an ADHD / Sensory Processing Dysfunction child. And now I am acutely aware that there is so much more to it than being wild and inattentive.

In our house "pick your battles" is a mantra. We all live by it. We have others like "don't poke the bear"  (the bear being Grace) and "you're getting baited" (one Brian and I have to remind each other when she is pulling us into a fool's battle). But "pick your battles" is the one we hang our hat on. For instance we buy her pricey underwear that don't cause a fight. We allow her to wear only one kind of socks that she likes. We try to find tagless clothes whenever possible. We avoid things like collars and zipper.

However, she much have her hair pulled back out of her face (not her favorite thing). She has to wear presentable clothes to church. She must wear shoes instead of flip flops or uggs to school. Bathes must be done every other day. And on and on. These things may seem like silly, small things that all parents fight with their kids over. But in our house these "fights" look more like nuclear war on any given day.

We're still learning. We pick our battles and lose about half of them. But we are still trying. We have learned that raising a kid like Grace means accepting the fact that she will not fit into a mold. We have to find a daily balance between negotiating and getting played by a five year old. It's a tough wire to walk but we do it.

It makes it doubly hard that although people THINK they get AHD they really don't. They may see a battle going on in a store and think it's just a bratty kid who isn't getting their way. There is so much more to the picture. I think if the world were more accepting of the differences between typical kids and Sensory / ADHD / Anxiety Disordered kids there might be less need for medications. Maybe someday that will be the case.

But for now we pick our battles carefully, fight them as best we can and do the best we can for our kids every single day.

**  This is the outfit Grace will wear to be a flower girl in her uncles wedding. Because of her "issues" with clothes this had to be custom made for her by the best seamstress that has ever lived. 

Lost teeth

Did I mention that someone lost her first tooth???

Honestly it was a sensory nightmare. From the time the tooth started to wiggle we had major meltdowns almost daily over the tooth not being "right". It got so bad some days that she would run around the table screaming and flapping her arms because it bothered her so much. It was a long month.

But then... the tooth came out. (actually she coughed it out!)

What a huge relief for everyone in our entire house. We were ALL ecstatic to see that tooth go!

Sensory girl gets a brother

When I became pregnant I wondered (aka worried) how having a baby brother was going to effect the girls. Obviously all new siblings bring a new set of life issues. When you add the fact that I am raising two kids who have SPD and are bothered by noise, smell, disruptions to schedule, change... Sounds like a recipe for disaster.

Thankfully Jacks birth has not been the nuclear meltdown that I expected. Both girls have been great with their baby brother. They are downright helpful. We have had our moments. When Jack gets really riled up in the car grace can't handle the noise. She covers her ears and howls right along with her brother. When a diaper is too stinky Grace has to go upstairs (she hates strong smells). When he cries for more than a few minutes in the house Abby starts flapping and spinnning from the over stimulation. Those are the moments that I am reminded that I am raising sensory kids.

Last week I had even more evidence of my sensory kiddos. I was changing Jack and Grace was talking to him. He was crying, not loud, but whining. She was trying to help get him settled when she says "does my little brother need some input. Is someone disorganized?" I had to stifle the laughter (because I know she would have been embarrassed). It just cracked me up that her brain goes there. I guess if Jack ends up being a high energy kid (like his sisters) then the girls will be able to help give him all the input he needs. :D

Another post on The SPD Blog Network

zcheck out my guest post on The SPD Blogger Network today.

Another guest post

Today I am being featured again as a contributor on the SPD Blogger Network!

Click here to check it out.

Contributor

Recently I was introduced to the SPD Blogger Network. It is a group of people who write about their personal experiences raising children with Sensory Processing Disorder.



I have so enjoyed reading the stories and have related so much I have decided to become a contributor to their site. I sometimes write about SPD here but because much of living with kids with SPD is venting and frustrating I try to minimize how much I write about those negative things. I am looking forward to having a place to share my SPD experiences with the girls.

I hope you will read along and get to know more about SPD!

BTW... today is my first scheduled post so check it out! (If you click on the octopus above you will be taken to the site.)

Under my umbrella

Some people say change is good. To them I say continuity is better. I fear change. Rather, I loathe change. I was much more spontaneous in my youth. I was significantly more likely to do something out of my comfort zone. Then I had kids.

Being a Mom... to twins... with special needs, changed that part of me. The small part of me who could tolerate change and spontaneity was gone. She was replaced with new persona who was bound and determined to spend like "on schedule". In my own head I think of it as being under my umbrella.

Almost any day could turn into a "rainy day". It's why I keep an umbrella in my car. It's the same philosophy that keeps me in my comfort zone. I don't like to go to new places. I don't like to try new things. When I go to the (same old) restaurant I get the same thing. It's the way I keep things moving forward.

I have to wonder... How much am I limiting myself??? Is staying "under my umbrella" keeping me from experiences I should be having. Is trying to protect my sensory sensitive kids from the possible meltdowns keeping them from experiencing new things? It's a balance beam for us. Trying to get the most out of our days but also not stressing the kids out so much they break down.

This summer I am making a concerted effort to step out from the umbrella once in a while. I don't think we'll be getting nuts (I am not sure I have that in me ;D) but I am going to *try* to push through all of our limits and try some new things. Go some places we've never been. Find an adventurous spirit in all of us. It is harder for us than it sounds but we're sure going to try.

What Sensory Processing Disorder is REALLY like.

A kind reader wrote to me about this fantastic blog post. The Kludgy Mom blog posted about what life is like with SPD.

Here is what she wrote:

Very few things will convince you what a miracle your brain is more than studying it.

It’s amazing! But if you’ve ever taken any sort of classes that teach what it does and how it does it you’ll find yourself sitting at a table suddenly convinced that if you don’t think about breathing that your body will stop because for heaven’s sake, it’s too much! How can a brain do it all?

Without you sparing so much as mental whisper, your body engages in hundreds of cellular processes that get oxygen where it needs to go, move your blood around, digest the bagel you had for breakfast and rebuild the skin cells that you scraped off your knuckle when you tried to fix the curtain rod with a butter knife instead of a screwdriver.

But more than that, it’s taking in hundreds of messages from your ears, your eyes, your skin and your nose. Your ears filter out the sound of the leafblower next door. Your eyes communicate that the light is bright so your pupils contract. Your joints tell your body that you’ve shifted too far in the chair and your backside scoots without you noticing. Your skin detects that it’s cooler and your hair follicles constrict to preserve heat.

And what were you thinking about while all that was going on? You were wondering how the heck Kim Kardashian gets that damned glossy hair.

You didn’t think for one second about what your senses were telling you, did you? Nope! What leafblower? Lori there is not a leafblower out…oh wait, yes there is!

Ha!

Your senses – sight, hearing, taste, smell, touch and proprioception (which takes information from your balance system and your joints that tell you where you are in space) send signals to your brain all the time. Dozens per second! Your brain reviews them, filters them, files them and reacts to them automatically. Effortlessly. In fact, most of that information won’t even register consciously because your active thinking brain wouldn’t know what to do with it all. Your nervous system is like the best gatekeeper ever, keeping those pesky sensory signals away from the advanced cortical processes.

But what if a brain doesn’t know how to do that? What if a brain can’t filter out the riff-raff, can’t figure out where to file things, and doesn’t know what to do with those signals when they show up?

That’s what sensory processing disorder is.

Imagine that every signal comes in at full strength. Imagine not being able to filter out the lawnmower two houses down when you’re trying to listen to someone on the phone. Imagine that the touch of seams from your clothing feeling like barbed wire. Imagine each position you sit or stand in becoming uncomfortable in a matter of seconds. Imagine squinting in pain when the overhead fixture floods the retina with light because the message to the pupils to contract got lost somewhere.

Ow. Yes. Ouch.

Sensory processing disorder is a condition that exists in anywhere from 5 – 13% of kids, and is seen in boys more than girls. It can exist in only one sensory area, or several. It can affect communication, mobility, fine motor management, reading and learning. It can exist by itself, or it can exist as part of a larger disorder. A huge percentage of kids on the autism spectrum have some type of sensory processing disorder.

Imagine a little one – a baby turned toddler – and turn his sensory systems into a giant screen TV with the sound turned all the way up sitting on the floor of a bouncy castle. What does development feel like for him?

How can I learn to walk when the floor is wobbling?
How can I learn to hold things when they’re never as far away as I think they are?
How can I learn words when everyone is shouting all the time?
How can I learn speech when I can’t even pick out the words?

As a speech pathologist, kids with auditory processing disorder often make their way to me. Auditory processing disorder is just that – when the information that comes in through the ears doesn’t get filtered, sorted and dealt with properly. A kid with APD may do just fine early on, but once they’re in a classroom environment all heck breaks loose because too much is coming into a system that only knows how to cope with one or two things at a time. But often, APD is hidden in a bundle of sensory challenges that create a really hard learning situation for a child. And then early development of speech and language is an uphill climb.

Developmental specialists, occupational therapists and speech therapists, work to create a an environment where the system learns the developmental skills it’s meant to in an environment that presents stimulation in manageable pieces. Skills that a typically developing child would learn simultaneously are worked on one at a time. Assistance is given to facilitate success then gradually withdrawn until a child has mastered the skill all by herself.

A brain needs to know how to cope with the information it receives, and sometimes this ability just doesn’t exist the way it’s meant to. People who can help present it slowly, gently and systematically turn the world of a child with SPD from a place of chaos into a place of order.

Until the four-year old discovers how to work the satellite receiver. Then it’s chaos again, but you’re on your own with that one.

If you want more information about language development, visit Your Child Talking. And to learn more about SPD, I recommend checking out the SPD Blogger Network.

Chewy Tubes

With the rising need for sensory input in our house so too has our alphabet of chewy letters grown:



Pretty soon we can start spelling words with their chewies. :D Seriously though, if your child too has sensory input needs chewy tubes are a MUST!

Meltdowns and other insanity

Life with school in the picture has it's ups and downs. It is wonderful to have a couple of hours a day to work, do housework and run errands. Especially since I am now working with one hand it takes me longer to do everything. That part is a huge blessing. The down side is the chaos it brings... mostly for Grace. She has a VERY hard time with change. We tackled the general change of going to school. But now we are dealing with the daily changes. Some days are school days, some are not. Some days are therapy, some days are not. Some days she stays in the classroom all day, some days she gets pull out therapy. It is hard for her. She hates the unexpected.

I know lots of kids have trouble with this but kids with sensory processing problems have so many problems with trying to handle this. This past week Grace had an hour long screaming fit (and I mean, screaming, gagging, hitting, pounding, etc.). When I asked her what was wrong she simply screamed I CAN'T CALM DOWN. It was heart wrenching. We are trying to keep up with her brushing, joint compressions and other sensory diet pieces but it is barely touching her needs. We are all hoping (including her new OT) that time will help this. So in the meantime we are trying to keep her environment calm and keep her as "organized" as we can. It is just so hard to see her struggle so much.

Should we even bother

One of the common questions in our house when talking about whether to go somewhere or find something to do is "should we even bother". It sounds very apathetic and downright lazy but it isn't a simple as it sounds. When trying to think of a place to eat... if we go somewhere too quiet the girls will be a disturbance. If we go someplace loud Grace will likely be completely overstimulated and have a meltdown. If we are thinking of going to a park... we can't go if it's windy or too bright, Gracie can't handle it. We can't go anywhere that doesn't make considerations for kids with developmental delays or Abby won't be able to play. If we are thinking of going to a store... we have to make sure it won't be too crowded or loud so Gracie doesn't get overstimmed. If we are invited to a party or event we have to make sure there are places we can take the girls to settle periodically.

Our life is full of a series of these weights and balances. We want our children to have a "normal" life. We want them to experience things. It just isn't as simple as needing to run and errand and running it. I know that parents of other "sensory" kids know exactly what I am talking about but many parents of typical kids don't. They see you taking your child out of a birthday party when they start flapping or spinning and think you're overindulgent or your kid is manipulative. They know that your kid isn't autistic so they figure the flapping is for attention. What people don't realize is every single part of the day for a child with problems regulating their sensory system is a chore. They don't transition well from one activity to the next. Asking them to get off the sofa and come eat lunch is like asking them to walk on hot coals to do so. Bright light is blinding. Wind is painful. Smells are overpowering. Things touching your skin hurts you. It isn't easy.

So how do you balance this with trying to lead a "normal" life??? That seems to be the question. I'd like to say that most days we can handle it. We bring chewy tubes and squishy balls and make it work. We pick and choose our times and places very carefully. We have a system for taking out a flapping child BEFORE the meltdown happens. It is just one more thing on the long To Do List of being a parent.

Great book

I think I mentioned recently that I have managed to find my way back to reading. I have replaced my old fiction, history and chick lit for books about sensory integration disorder, living with special needs kids, general parenting and other mom-related books. Recently I have read some good and some not so good (remember that awesome book with the terrible ending?). A fellow blogger and fellow mom of a non-traditional twin set recommended a fantastic book, My Baby Rides The Short Bus. It sounds terrible but is an amazing book. It is a book written by parents of special needs kids and shines a light on what it is REALLY like to live with a child with disabilities. This book has made me laugh, cry, think and so many other emotions.

Most afternoons I sit with the girls for about a half an hour. I put on Backyardigans or Gabba and I sit down with my book. Gracie usually sits on my lap and pretends to read. Many days she asks me to read out loud. Today I was reading an excerpt from that book out loud to her. It was a section on a child with Asperger's and many sensory issues like Gracie has.

Right when she asked me to start reading out loud the passage read, "During calm times, when I want to embrace him, he pushes me away. He can't tolerate the feel of my skin on his; it is repulsive to him. When he's raging, I can't tolerate him. I don't want to hold him. I want to leave until it's finished' I want to go away. I am repulsed." It felt so pointed. Me reading a passage like that out loud to her. The child who I love so fiercely but can make me feel so awful when she has a crash and bash day. It brought tears to my eyes. I stopped reading and she looked at me and said "Mommy you have water in your eyes." I obviously played it off because she is way to young to understand. It just felt so nice to know this feeling is not unique. That I am not the worlds worst mother on those days where I simply can't stand her.

I am not alone!