Our Story Is Published!

Last October, Will's Sensory Processing Disorder story was featured on Hartley's Life With Three Boys as she shared 30 SPD stories in 30 days.

I was so excited when Hartley contacted me this spring to let me know she would be publishing the stories in a book and would like to include mine! Sensational Journeys will be released on September 1 and is currently available for pre-order at Amazon.com for about $10.00.

A copy of the book is on it's way to me and I can't wait to see our story in print! Please spread the word if you know of a family affected by SPD.... it's wonderful to be able to read stories of others who are going through the same things as you.

Disclosure: This post contains an Amazon referral link. Please note that I was not compensated for the submission of our story for this book.

Artwork by P: Quite Telling

A few weeks ago at play therapy, our therapist had P and WC do some artwork, and she said to me under her breath, "You can get a lot of info out of what they draw."

So I sat back and chatted with her about various discipline methods while they worked on their pictures.

Once they were done and handed them to the therapist, she looked at me and said, "See?"

P had drawn our family WITHOUT NOSES.

Remember his over-sensitivity to smells? And how he used to throw up when he smelled fruit like apples, oranges and bananas?????????????????????????? Although listening therapy helped tremendously, he simply prefers not to smell things like that- so no noses. Isn't that interesting?

By the way, the grey hair on drawings of Mr. Sasha never gets old.

SPD: 30 Stories in 30 Days

Through blogging, I "met" the most wonderful mom and blogger named Hartley, who is the author of This is Gabriel Making Sense of School: A Book About Sensory Processing Disorder.

Hartley had a wonderful idea for a fundraiser: she asked SPD moms like me to share their story on her blog to raise awareness about SPD, and she's doing a fundraising project for SPD Foundation’s 30th Anniversary at the same time.

How can you help?

First, head on over to read our family's story at Hartley's Life With Three Boys, which is the featured story today. I'll be reading the comments there throughout the day and would love to recognize some names! Should you feel led to make a donation to the SPD Foundation, just put my name in the comments section of the PayPal form to let Hartley know you are a friend of the Sashas.

Next, will you spread the word about our story on your facebook and twitter accounts? Simple links to my post at Hartley's blog would be wonderful!

Thanks for following our SPD story! I appreciate it more than you know!

TGIF

I'm just not sure we could take another day this week. The Wild Child had been doing so well at therapy and in school recently. In fact, our behavior therapist suggested we take a break since she was doing so well- she thought we had it under control. It's probably been about 6-8 weeks since we have had an appointment for WC. We are still doing maintenance listening therapy for her Sensory Processing Disorder, doing 10 minutes per day of a Samoas CD in an effort to minimize what her OT thinks is Central Auditory Processing Disorder.
And in what I thought was an unrelated note, I was just thinking that I hadn't done a "Notes from School" post in quite a while. But *this* is not the post I wanted to do.
5-18 WC was loud and restless at nap. While Miss C was talking to a parent in the room, WC rolled over and kicked her multiple times.
5-19 WC had a very hard time listening to teachers today. At lunch she was asked many time to get her knees off the table, and she continued to put them up there on purpose, so she ate in the office.
5-20 WC had a hard time listening again today. She got mad at one of her friends and scratched them on the face. We talked about using our words and telling the teacher instead of hurting others. She did very good at nap today!
And when I went in her classroom today and saw a cookie in a baggie on her hook, I knew that was a bad sign- that meant she didn't get to participate in a birthday snack.
5-21 WC still had a hard time listening and following directions. She shoved her friend in line instead of using words.
I am so full of sad right now....... I figured we would need to go back to behavior therapy at some point, I just didn't think it would be so soon. That's 4 days in a row! I can't put my hands on Monday's sheet right now, but I bet there was something on there as well...........................

This Is Gabriel Making Sense of School

Do you know what is so fabulous about the Internet? I bet you do.

In this day and age, when you as a parent are faced with something (a diagnosis, a problem, or just something new), all you have to do is google and help is right there! Our parents weren't this lucky.

When The Wild Child was first diagnosed with Sensory Processing Disorder (SPD) in 2008 at age 2, I was in awe of all the information that was available to me online. There were other kids like mine! There were other parents going through the same thing as me!

But when the The Politician was diagnosed as well last fall, I found my emotions were a little different this time- he was 6 and in public school, which was a whole new ballgame and I felt so overwhelmed. We were fortunate that P has a teacher who was willing to make accommodations and work with us to find way to manage him and the resulting behavior. Many times I sent links to his teacher to various articles and websites in an effort to help find ways to help him in the classroom.

I can't tell you how excited I was to find Hartley Steiner, who blogs at Hartley's Life With 3 Boys. Hartley's son Gabriel is 8.5 and has been diagnosed with Sensory Processing Disorder, as well as having some other challenges. Hartley always has insightful posts packed with helpful information. She's even come up with a downloadable Sensory Accommodation Suggestions Page that she describes as "a tool for parents, caregivers, teachers and therapists who are involved in helping meet the needs of a child with Sensory Processing Disorder in the classroom."

Hartley has written a fabulous book called This is Gabriel Making Sense of School and I was lucky enough to receive a copy to review. The book was written to give everyone (teachers, parents, and students) a better understanding of SPD and how it affects school and learning for children with SPD.

You first note that the book is absolutely gorgeous- the illustrations are vibrant and colorful and eye-catching.

This book contains nine pages of text: an intro, a page for each of the seven senses, and a conclusion. I think the contents and length are just perfect for an elementary-aged child's attention span. Each facing page is colorful and packed with beautiful pictures that illustrate and relate to each of the senses and how SPD may affect it.

I will be purchasing additional copies of this book to share with my OT and with P's teacher- what a great resource!

Disclosure: I was sent a copy of this book for review purposes. I received no compensation for this post.

Sensory Processing Disorder- Our Story

Sensory Processing Disorder (SPD, formerly known as "sensory integration dysfunction") is a condition that exists when sensory signals don't get organized into appropriate responses. - SPD Foundation website

You know, I'm often asked how I knew that my daughter (The Wild Child) had Sensory Processing Disorder (also called Sensory Integration Disorder). How did I know that something was off?

That's a loaded question. It wasn't something that just "hit" me. And honestly, we didn't get to that diagnosis quickly.

WC was born with a hemangioma, which ulcerated after a few weeks. This wound was open for about 2 1/2 months, and she was in great pain. So from the beginning, there was rage and we were unable to comfort her. You can read more about that here.

Of course the hemangioma did eventually heal, but we were left with what we thought were behavior issues. She became a biter (others and even herself!) and was quite aggressive around 18 months. There was a one-week suspension from daycare and many many many phone calls and meetings.

Right after her second birthday, I stumbled into a biting workshop at our local county health department and they mentioned SPD and it absolutely snowballed from there. Evaluations, more meetings, referrals, and we found our dream OT who finally helped us reach and slowly get a handle on our girl.

It's been about 2 years since our diagnosis, and we've come a long way. We're still doing maintenance listening therapy and seeing a behavior therapist that offices with out OT, but WC has become so much easier to be around- her teachers even describe her as delightful at times!

Many, many books were recommended to me but one that hit home on our journey was The Out-of-Sync Child. I checked it out from our local library and flipped through it on my way out the door. After a few seconds of flipping, I felt my eyes fill up with tears and I moved towards the wall so I could lean against it for a second.

I found it. I found a paragraph that I should print out and give to everyone that knows WC.

From page 193:

A mother wrote me this letter: "By the time Rob was two, I felt he had a special need, but I couldn't figure out what it was. He required constant attention. Time-outs didn't work because I couldn't contain him. He was defiant, disobedient, disrespectful, and demanding. He was always busy, always talking (great verbal skills!), strong willed, contrary, and easily frustrated. I felt blessed to have Rob, and wouldn't trade him for the world, of course, but he constantly tested and rejected me."
And more on the next page.

"What was the reason for his behavior? How could I regain control? What method of discipline would get through to him? If his behavior was an attempt to get my attention, how could I supply it in a way that would satisfy him? How could I help a high-energy child channel his energy in a positive direction? I was desperate for answers."

If you replaced Rob's name with WC's and switched out them hes and hims for shes and hers, I could have written that, word for word.

You don't know how good it feels to know that you are not alone.

To read more about our Sensory Processing Disorder journey, click here.

Disclosure: This post contains Amazon affiliate links.

I Am The Proud Borrow of

The Kazdin Method for Parenting the Defiant Child

My bargain ladies assure me that this is the book for me. Since I have a child that is un-punishable (Me: If you don't do what I say, I'll turn the TV off! WC: Fine, I want you to turn it off!) and doesn't quite know her boundaries and how to show respect (Me: Don't you talk to me that way! WC: Don't you talk to ME that way Momma!) it stands to reason that positive reinforcement is the way to go. A part of this equation is that you simply can't contain her (so time-out isn't an option) and she really thinks getting in trouble is quite funny.

Actually, we've already been working on positive reinforcement with her therapist, and we've made great strides. I just want to institute some consistency in our days and hope to have more goods days than bad, so I've been looking for a "method" and I'm hoping this is the one.

So tell me, do you have any experiences with this book? I checked this out from the public library at lunch today and can't wait to dive into it this weekend. I'm planning for a Monday start, because, well, we all know it's just not possible to start anything new on a day other than Monday.

It Takes a Village

You guys know that I have been having difficult times with The Wild Child lately, and I have been (im)patiently waiting for things to turn around. Almost three weeks ago WC and I visited a family therapist together who offices with our OT in hopes that she could give me some tips to make things go smoother at home. I also wanted to make sure that we weren't dealing with something like Oppositional Defiance Disorder.

I've been to see the therapist twice on my own since then, and one of the things we've been talking about is me finding some confidence in myself. I needed to remember that I am a good mother! I was having such a rough time that I was simply feeling sorry for myself and a little bit lost, parenting-wise, and come to find out, that's just a vicious cycle that creates more problems. The therapist thinks that WC is so in tune to me that my anxiety severely affects her. Since she knows she doesn't know how to deal with that along with her other issues, she pushes me away.

I feel so blessed to have found someone else who can help us. It's amazing how much better I feel after just three visits! She thought that as I gain my confidence back and institute some of her tips and ideas, things would slowly get better.

Well, last night was the best night we have had with her since her surgery in October! She actually let me lay down and snuggle with her and read some books and she fell asleep with her little hand on my chest. I am so excited that things seemed to have turned around for us!

In your prayers tonight, remember WC and I and ask for continued support for us from all the wonderful people who have been helping us over the last year. It seems to take a village to raise my child and I'm super happy to have the population of my village continue to grow.

Today is Big Girl Bed Day

From Nov 1 through Christmas, The Wild Child didn't slept worth a shit. In addition to not going to bed until close to 10 pm, she would wake up an average of 5-7 times per night. Mr. Sasha and I were exhausted and didn't had a moment to ourselves. I didn't say a whole lot about this on here, because it's just hadn't been something I wanted to unload on you guys.

About a week before Christmas , I was doing some research and read about weighted blankets, which are supposed to help kids with SPD sleep better. I thought, what the hell, I'm desperate and ordering one. I ordered a 7 pound blanket that was 36" X 54" from The Hug Shack.

(photo from The Hug Shack)

It arrived on Christmas Eve and a miracle occurred! Her wakings decreased to 1-2 times per night, which was oh-so-much better. We were still having the issue of getting her to go to sleep in the first place though- 10 pm was still about the norm.

Last week, at the suggestion of Kelly Bee, I asked our OT about trying Melatonin. She said she had quite a few patients on it. I of course checked with my bargain board ladies and got some info on what kind to pick up (liquid). Another miracle! After giving it to her at 8 pm, she was going to sleep at 8:30 without a fight! I also checked with our ped to make sure he was OK with it, and he said if it's helping that much, go for it.

But she's still waking up once a night or so and coming into our bed, stealing my pillow, and jamming her little knees into my back and just generally disrupting my much-needed sleep.

So we think maybe she's rolling around in her crib-converted-to-a-toddler-bed and hitting the sides. So tonight, it's Big Girl Bed time. Mr. Sasha has already picked up the new full-sized mattress and box springs and dropped them off home, ready for us to rearrange her room tonight. All her furniture is tethered to the wall (I'm a super-smart mom!) and so we'll have to undo that and move stuff around to make it fit.

For now, we'll be leaving the mattress/box springs on the floor. I have a beautiful family quilt and a gorgeous pink blanket I've been saving to use on her BGB.

So cross your fingers and toes that tonight goes well!

Big Fat Nothing

That's what I have planning for this weekend!

And I'm so excited!

Tonight Mr. Sasha is taking The Politician to see a dinosaur show, and so The Wild Child and I will have a nice evening at home and hopefully have some good quality time together.

I haven't said a lot about this on the blog, but WC has been having major issues with bedtime for the last 3 months due to her Sensory Processing Disorder. She has also being going through a "Daddy Only" phase at the same time, and those two things together have made for a stressful time at the Sasha house.

Our OT thought maybe WC was picking up on my anxiety about the situation, but although I feel a lot better since I went up on my anxiety meds, it hasn't changed WC's feelings about letting me comfort her.

So we'll see how tonight goes and maybe tonight will break the cycle and I can help her get to sleep without Mr. Sasha being there.

Another Fabulous Book About Sensory Processing Disorder

Sensational Kids by Lucy Jane Miller

Absolutely a fabulous book. She works daily with children with these issues and really understands. Definitely needed if you child has SPD/SID.

A Little Background on WC's SPD/SID

You know, I'm often asked how I knew that WC's had a problem. How I knew that something was off.

When I picked up The Out-of-Sync Child from the library the other day, I flipped through it on my way out the door. After a few seconds of flipping, I felt my eyes fill up with tears and I moved towards the wall so I could lean against it for a second.

I found it. I found a paragraph that I should print out and give to everyone that knows WC.

From page 193:

A mother wrote me this letter: "By the time Rob was two, I felt he had a special need, but I couldn't figure out what it was. He required constant attention. Time-outs didn't work because I couldn't contain him. He was defiant, disobedient, disrespectful, and demanding. He was always busy, always talking (great verbal skills!), strong willed, contrary, and easily frustrated. I felt blessed to have Rob, and wouldn't trade him for the world, of course, but he constantly tested and rejected me."

And more on the next page.

"What was the reason for his behavior? How could I regain control? What method of discipline would get through to him? If his behavior was an attempt to get my attention, how could I supply it in a way that would satisfy him? How could I help a high-energy child channel his energy in a positive direction? I was desperate for answers."

If you replaced Rob's name with WC's and switched out them hes and hims for shes and hers, I could have written that, word for word.

You don't know how good it feels to know that you are not alone.

WC's Sensory Diet

My Mid Mid-Life Crisis writes: Sasha, I teach children who need some sensory stimulation to help cope with their disabilities. Any suggestions about things you use at home to give your child a "sensory diet"? I have some things I am currently using, but I'm always looking for more suggestions!

That's a great question! I'm currently reading this book and came upon a great section on Sensory Diets.

The Out-of-Sync Child

From page 229 "Just as the main food groups provide daily nutritional requirements, a daily sensory diet fulfills physical and emotional needs. The out-of-sync child needs an individualized diet of tactile, vestibular, and proprioceptive nourishment more than most not doesn't know how to get it. So, we must and can help.

A sensory diet includes a combination of alerting, organizing, and calming activities."

Here are some of the things I've found help WC. Some of these came from our OT, and some WC was already seeking herself (smart little thing).

Alerting- benefit the underresponsive child, who needs a boost to become effectively aroused

• Crunchy food- she loves and asks for cereal, popcorn, chips, crackers, pretzels, and ice
• Jumping up and down on a mattress or trampoline- we got a mini tramp at the suggestion of the CDS and WC sometimes seeks it out on her own
• Drinking large amounts of Crystal Light Raspberry Lemonade- WC practically begs for this, and the OT realized that she was "seeking" oral stimulation because this is pretty tart!
• She also loves lots of spicy food- Hot Mustard from McDonald's, salsa, spicy chips- the spicier the better

Organizing- help regulate the child's responses

• Chewy foods- including granola bars, fruit bars, chewy fruit snacks, cheese sticks
• Play dough and coloring
• At OT, she loves that yucky goo that has bugs in it- she loves getting the bugs out

Calming- help decrease sensory overload

• Getting massages- she'll say "I need a massage"- we concentrate on one body part at a time and do sort of a deep-tissue massage
• She insists on us rocking her in the rocking chair before bed- she knows she needs this transition time and rocking helps her relax
• Popsicles- the sucking activity is calming
• We use a white-noise machine in her room at night and she finds it calming

WC's main issue is "regulation" which means she has trouble modulating (adjusting) her mood and senses. Because of this, she needs a sensory diet that includes all of the above since she can go from being understimulated (sensory-seeking) to overstimulated in 60 seconds. Transitions are rough and she can basically be described as uneven. But we have seen great improvement from OT and from simply being more aware of how her system works.
If you don't mind sharing, I'd love to hear what items you include in the sensory diets of your students!

More Sensory Books

I had a question about the prior book and if it had info about children who are sensitive to sound.

I think that book is really more of an "overview" and I don't remember anything specific like that. The two books below, the first in particular, have come highly recommended to me and I have them coming to me.

Too Loud Too Bright Too Fast Too Tight

The Out-of-Sync Child

Dear Concerned Therapist,

Just a quick post to let you know that although I appreciate your concern, I am still confident we chose the correct OT. One of my closest friends is an elementary school OT here in our town, and she had only wonderful things to say about this pediatric OT and assured me we made the right choice.

I also feel confident in our choice to do the Therapeutic Listening program that she is certainly well-trained in.

If the OT hadn't warned me to watch for odd behavior on the 4th or 5th day, I might have been freaked out a little. But since she gave me a log sheet and asked me to makes notes about anything out of the ordinary, I'm not worried at all.

In fact, I can already see some positive changes in WC.

The strange middle-of-the-night behavior has not happened again. In fact, Sunday night (day 4) was the only night she had any sleep issues at all. Every morning since she's woken up in a fabulous mood saying "I'm ready for my music!".

So while I appreciate your concern, the Sashas have it under control.

WC and Therapeutic Listening

WC started her Therapeutic Listening last Thursday using her super-fancy (and very expensive) headphones. She listens to special electronically altered CDs that vary in musical style, filtering, and level of complexity. We do this twice a day for 30 minutes.

It seems very new-agey to me, but our OT is just brilliant and is confident that this program will help WC learn to regulate her sensory processing.

The OT warned us that we might see some "odd" behavior on day 4 or 5. She said we may see some old behaviors (biting, hitting, etc) come back out as she adapts to the CDs.

So I'm glad I was a little prepared for what happened at 1:30 am last night. She woke up grunting, moaning, and crying, and when I went in her room she said "Get away from me!". (That'll break a mother's heart.)

For about an hour and half we watched as she wallered around on the floor, alternated between being upset and being quiet, and spent some time hiding under the clothes in our closet. She didn't want to be held or touched during this time period. Finally about 3 she calmed down enough to lay in our bed and we were able to get her back to sleep in her own bed about 3:30.

I am tuckered out today.

And it was strange. I've never seen her act like this. But I think it's a good sign, and it means the CDs are starting to work- to have some effect on her. The OT gave me a log sheet to write down behaviors that we notice, so of course this will be going on there.

Wonder what will happen tonight....

Is Your Child a Pooh, Tigger, or Piglet?

Winnie the Pooh

• More adaptable character. These flexible children generally fall on the middle of the continuum for most temperament traits.
• Their moods are positive and their activity level is moderate.
• They are usually open to meeting new people but may occasionally need support and assistance to feel comfortable. The generally take change in stride.
• Parents and caregivers often find these children easy to care for. The parent of a Pooh may comment that she sleeps well and he can predict when she will want to eat, sleep, and play.
• About 40% of children fall in this category.

Piglet

• More cautious temperament. These are the children we think of as being thoughtful or quiet.
• Usually not comfortable in new situations and will need time and support to transition from one activity, setting, or caregiver to another.
• This child can at times seem to have a somber or serious mood. He or she will probably be slow to warm up to new people and activities.
• About 15% of children fall into this category.

Tigger

• Feisty temperament. These children usually react strongly to change and have a high activity level.
• They can be unpredictable and typically display strong reactions, both negative and positive. You never have to guess how they are feeling. When they are happy, they are joyful; when they are sad, they wail, when they are angry, they scream.
• About 10% of children fall in this category.

The additional 35% of children represent a combination of these types.

This was the information the CDS gave me about different temperaments. The Politician and I are probably a Piglet, with a little Pooh thrown in. Mr. Sasha is all Pooh.

WC is definitely a Tigger!

Sensory Sensivitity vs. Sensory Integration Disorder

The more research I do, I really think that WC has more of a "sensory sensitivity" than "sensory integration disorder". She just doesn't meet all the characteristics of SID. She meet some, but not all, and I think that's more of a sensory sensitivity. (Which explains A LOT about me- you know how I can't be hot or I freak out and can't breathe, and how I can't smell the same smell for very long or I feel sick and hot, and then I freak out, and then it's just a vicious cycle.....)

Anyway, last Thursday, our CDS called and me and said she wanted to refer us on to a Occupational Therapist to do an evaluation on WC. At first, I was worried that it was worse than we originally thought, but after reading more this weekend, I actually think it's better than we thought.

The CDS said that the OT will probably be able to tell us some specific things we can do at home to help WC, which sounds great to me.

So I called the recommended OT today and we talked a little about WC and I filled her in (what a story!). She felt like she can help us and we will probably get together next Wednesday.

I am just feeling so good about the steps we are taking!

Diagnosis

The result of the screening/questionnaire from last week is that The Wild Child has Sensory Integration Disorder. I feel better that we know what is causing her inappropriate behavior and now we can start working on how to handle it.

Basically, her sensory threshold is like a half-filled glass of water. If you try to put anything else (more sound etc) in the glass, she has trouble processing it. So when the teachers ask her to stop doing something (like taking off her shoes) and she doesn't respond, it is because she can't process their words since so much else is going on sensory-wise. Makes me feel better that she's not ignoring them like we thought. This problem is also causing her to act inappropriately when she is over-stimulated- that is when she bites, hits/swats, spits.

We are still having her hearing checked on the 27th just to rule out a hearing problem.

And the Child Development Specialist will be going to her school on the next week to observe WC in class, and then the CDS will go back twice in the next two weeks to visit with her teachers during nap time and get us all on the same page. Mr. Sasha and I will go back to see the CDS in three weeks to see how everything is going....

I feel better, mostly, but also hate that there is something "wrong"... But I am confident that we will figure it out!

I Can Be Crafty!!!!

I bet you are wondering, what can be made with thin ribbon, pipe cleaners, and aquarium tubing?

Why, an Official Sasha Family Anti-Biting Bracelet.

Proof positive that it is totally possible for me to be a little crafty when necessary.

When I told our Child Development Specialist last Tuesday that WC has been biting herself on the arm when she's frustrated, she told me to get some aquarium tubing and fashion a bracelet. Once she is wearing the bracelet, we are supposed to encourage her to bite the bracelet when she needs to chew on something- not skin!

I spent a few days trying to figure out in my head how to thread ribbon or elastic thru the tubing, when I had a Eureka Moment yesterday and thought of pipe cleaners. I wrapped the end of the ribbon around the end of the pipe cleaner and used that to thread it through. Genius, I tell you. (I do hate that it took me 4 days to figure it out, but hey, I'm an accountant, not an art major.)

Anyway, she wore it to school today and had a fab day, and evidently spent quite a bit of time chewing on the bracelet and not her friends.

We see the CDS again tomorrow and I am hoping to get our Discipline Plan down on paper. Wish us well!