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. 

Let's Talk OT

Written by Heidi:

From the time Ethan was 3 months old I asked and asked and asked his neurologist for an OT referral. His first sign that OT might be necessary where his fists. He clenched them .... ALL the time. Even during sleep.  I believe that the doctors were so thrilled that his cerebellum was growing to the right size (it hadn't been before 3 months old on ultrasound).  At this point we hadn't had an MRI yet, so we were unaware of his RS. Because of the "normal size" they just wanted to throw him into the "normal" category.  By 6 months it was becoming obvious this wasn't going to happen.

So finally, at 8 months we had our initial evaluation. And so it began. Therapy became our life. Everywhere I looked I saw therapy. Play became therapy. Diaper changes became therapy. We brushed him, yes I said brushed, from head to toe with those infant hairbrush they give you at the hospital. This was to stimulate his neurons. We wanted to get them going and activated (we were told this should happen before age 2). We had bean boxes, ( I believe every kid needs one....what fun!), we had putty to hide buttons and coins...great travel therapy!

And so our days of therapy continue. OT has been loads of fun with Therapeutic Listening, seek and find puzzles, a push pin letter thing I made up and so on. But it has paid off! His writing is so close to his peers.  All this being said tying his shoes is a constant battle...but that is every kid...right!!??

Hi Mrs. Fescoe, It's Abby's teacher...

Not exactly the voicemail I wanted to receive on a rainy Monday afternoon...

I came back in the house, drenched, and noticed that I had a voicemail. I put it off a few minutes since Abby came home wild, saying she "accidentally cried" at school and her face was blotchy, red and puffy. I didn't get much info out of her so I decided to give her a half an hour to rest and then revisit what had happened.

That's when I picked up the voicemail. I heard "Hi Mrs. Fescoe, it's Mrs. F.... Abby's teacher. I wanted to talk to you about a couple of things. {GULP} First there are a few birthdays coming up and I wanted to give you dates to send in vegan snacks for her {SIGH OF RELIEF}. Second, I wanted to see how her doctors appointments went {SECOND SIGH}. And I also wanted to talk to you about some behavior we are seeing. {SHIT!}

She did some brief explaining but I hung up the voicemail, called her back and prayed I would catch her before she left. I didn't see myself sleeping well if it had to wait until tomorrow. I lucked out and did catch her.

We went through the pleasantries, the party dates, the doctors visits... then got down to business. It seems my previously "model student" has escalated significantly. Meltdowns, temper, screaming, throwing things, obsessing over people and things, perseverating, singing inappropriately, being loud... you name it. I wish I could say I was surprised but we have been here before. In preschool we had to meet with the behaviorist and her OT to completely revamp Abby's behaviors and sensory plan because she was so out of control. Seems we are back to square one.

It's just so frustrating sometimes. I am not naive. I know that raising a child who is "different" will always be chock full of issues. It's because the "issues" have a tendency to ebb and flow that we become the most frustrated. There are times when things are good; her balance seems better, we have no significant falls, her behavior is great, etc. In those moments we *almost* forget that she has lifelong "issues". Because of that we sometimes feel blindsided when it falls apart.

I am not sure how, after almost six years of dealing with these ebbs and flows, we can still manage to be blindsided. Maybe it's my eternal optimism? Maybe it's self preservation? Maybe it's stupidity? I'm not sure but it sure as hell is hard!

So now we will be revamping her sensory/OT plan and it looks like the behavioral specialist will be called in. I am guessing her developmental pediatrician will want to get in on the planning and I am sure there will be another push for meds. Not sure what the outcome will be but I realize we're lucky to already have a team in place.


Posted by Kristen Fescoe

A typical day...

Contributed by Heidi:

(This is a requested blog post from a previous comment)

A typical day with an RS child doesn't start any different that any other child, at least in our family. I work away from our home three days a week. However, I'll describe a day I'm fortunate enough to be home with my boys.

Ethan sleeps in his own room most nights. Lately has been bent on sleeping on the floor of our bedroom. I will admit that I have caved on several occasions …sigh.

Anyway if I have already woken up and I am downstairs he will stand at the top of the stairwell and throw his stuffed bear down the stairs since he is not allowed to carry anything down the stairs. He must concentrate on getting down them safely!

Ethan doesn't have the same food allergies as Abby or any of the other eating issues that seem to plague a majority of the other RS children. So Ethan loves a big breakfast! Only it takes him forever to get through it. Lots of utensils and cups dropped when the weakness and coordination come into play. I would say on average we have 15 to 20 drops a meal.

We have a structured and not structured type of a day. He loves cartoon network and I am not a mom that says no tv. I tend to relax on some of those issues as we are so structured and disciplined with so much therapy and those are the battles I choose to fight. He gets two sets of a therapeutic listening at 30 minutes each session, each four hours apart. He does something constructive during these like worksheets for OT or board games. Sometimes we even use eating as this can be OT for him. We fit in PT throughout the day with knee exercise (which we do during Wii), clamshells for strength with a band, eye exercises which comes in many forms including some on an iPad or computer.

But with all the "therapy" we fit in it results in "play" for him. There have been so many instances where I have watched him play and I find myself thinking, "oh what great therapy that is”. With an RS child everything they do is learned. Not much comes instinctively for them. Even a simple task at almost 6 years old of getting in and out of a car is not a coordinated task. So as we go in and out of stores and cars there is a constant watch and aide that we provided. As much as it would be wonderful to still put him in a seat of a shopping cart to be able to get thru a store without him walking zig zags, tripping or bumping into something. At 6 he doesn't fit in the seats anymore so we get a few looks when he bumps into people or he walks into their path or falls and even does a complete somersault from tripping over his own feet.

A typical family dinner, with lots of dropped utensils again! Off for bath or showers, which we have to say constantly sit down as slippery doesn't even describe it, bed time stories and then to bed. Lately he has been pushing the typical 5/6 year old why does everyone else get to stay up later and gets out of bed with questions to delay.

He makes us laugh on a daily basis with his witty sense of humor and his quick thinking.
So, a “normal day” for us isn't too different from that of most families… or its just become routine for us. Of course I didn't describe a day when we have multiple specialty appointments and our weekly therapies...but... Maybe another post!

My Happy Flappy Girl

One of the most obvious things about Rhombencephalosynapsis in our house is the flapping that goes along with it. When Abby is excited, tired, nervous or feeling any extreme emotion she flaps, A LOT. People will sometimes ask if she is autistic because spectrum disorders are so commonly associated with flapping.

She also rolls her head (from side to side), spins in circles and tenses the muscles in her arms and legs repeatedly. Sometimes when we are out in public I catch people staring. To them I am sure it looks odd. But sometimes when I see people staring it takes me a minute to get why. To us flapping, spinning, head rolling, etc is such a normal part of life we flat out don't notice it.

They have worked on it in OT. Every therapist she has ever had has taken stabs at stopping or minimizing it. Nothing has ever helped. Almost every parent of a child with RS reports some level of flapping or rolling. So for us it's "normal". That being said, every once in a while, when she is excessively flappy I take notice. I wonder whether it bothers her or if it will. I wonder if it will be less extensive as she ages or whether she will always be a flapper.

I am sure over the next few years therapists will continue trying to make it "better". We would argue that it is just a part of who she is.

Neurogenetics

Today was our (semi-dreaded) annual neurogenetics appointment. I was very nervous because I wasn't sure what the appointment would yield, what other appointments it would lead to and if we would click well with the new doc. First things first the doctor was awesome! He was good with Abby and she responded well to him. You could tell that the child that he read about was not the child he saw in front of him. He was blown away by how awesome she is doing! YAY!!

Here is the rundown of what we discussed:

- The OT at CHOP doesn't feel that brushing is for Abby. Not sure what we are going to do with that info but it was interesting. She felt that things like brushing are purely passive and more active types of strategies (heavy work, wheel barrel walking, etc.) are better for a younger child.

- The PT is pleased with how school is handling her PT. We have some concerns but she reassured us.

- Abby is going to start taking Melatonin (a three month course) to try to help with the sleep issues.

- Our wonderful genetic counselor is going to slide Abby into one of the neurogenetics slots with the developmental pediatrician so instead of 9 months it should take 2!

- Abby is FINALLY on the growth chart. She's tiny but she's on it. :D

- The Ataxia has improved a great deal. Her balance and gait are good for where they expected her to be.

- Very interestingly, while we thought she only had hypoplasia (thinning) in the back portion of her corpus callosum she actually has partial agenesis.

- NO BRACES THIS YEAR!!!

- All in all she is a neurogenetics rock star. Based on what her MRI's look like she should not walk or talk or think or be cunning and smart alicky. :D She is so far above what she "should" be doing it is amazing!!

The weird part is that despite all the wonderfulness that was this appointment it is still a little frustrating. We hear A LOT about how she is doing "compared with what she *should* be doing". I feel like in the midst of that some of what she *could* be doing gets lost. It's hard to explain but it is almost as if I should be thankful that she can walk and talk and I need to "relax" on some of the peripheral stuff. As her Mom it is MY JOB to NOT let the peripheral stuff go. If I do than it will slip through the cracks.

I do want to end on the bright side though. She is amazing. She is a complete and utter miracle. You look at how mushed and squished and malformed her little brain is and then you look at this wise-cracking, humorous person and it is astonishing. She is astonishing.

Brushing

We're done! We completed our 3 week "course" of brushing so Abby's OT has stepped us down from EVERY SINGLE TWO HOURS SHE IS AWAKE to as needed. Yay!

All in all I am a skeptic (at best). Brian feels like it helped a great deal. I think that is maybe helped a little but other strategies we are using have more to do with it than brushing. Don't get me wrong I do believe that brushing works for some kids and I think it did help somewhat. It just didn't have the major impact that I had hoped for. We saw a slight reduction in the severity and length of her tantrums and it helped a little with her impulse control.

I guess I should have the attitude that anything that helps is worth it but I feel like the ratio between the effort put in and the outcome was probably not really great. Over the past three weeks we have had to fight her every two hours to get her to sit still and be brushed. She hated it the entire time. And at the end the impact was minimal.

At least we can say we tried.

Brushing Update

Just a quick update on how the brushing is going. We are on day eight (out of 21) of brushing every two hours. While it only takes about 5 minutes it is still a bit of a chore. She fights us on it most of the time which makes it worse.

We are seeing some minor improvement (less severe tantrums and slightly better self soothing capacity) but it was not the big turnaround we were sold. All in all I am mixed. It isn't hurting her so we're keeping at it. She is still flapping and head rolling non-stop so the brushing is not helping that part of it (I honestly didn't think it would).

I guess we'll see in the end if it seems worth it.

Brushing - Day 3

We are in the middle of day 3 and at this point I am mixed. I read through the literature and it points out that in most kids they initially over-respond to the input and have a few rough days. I am hoping that is all it is. She is still crying every two hours when she has to be brushed. She is NO BETTER... AT ALL. She is still flapping, rolling, spinning, spitting, threatening, not listening to a darn thing I say and acting like she is possessed.

Hoping for a better day 4!

Brushing - Day 2

If it's possible to have done a 180 that fast... we did.

To rival yesterdays smashing success with brushing today was an epic fail. Abby spent the day flapping, spinning, head rolling and crying every two hours when brushing time came. We know it is an adjustment and we also know that the "brushing guru's" believe that this technique actually "rewires" the brain. So that being said we don't want to abandon ship without even giving it a chance.

BUT (and that is a big but) it is miserable having to not only do this "thing" every two hours but to also have to talk her off the ledge every two hours is awful. We are hoping that tomorrow is a better day. If not we're just not sure what to do with it.

Brushing - Day 1

We officially started using the Wilbarger Brushing Program for Abby. This means that we follow a VERY specific brushing, joint compression and oral input regimen EVERY TWO HOURS while she is awake. Thankfully we will only have to follow this rigorous schedule for three weeks and then we will only have to brush a couple of times a day and then as needed (birthday parties, church, going out to eat, etc.). The thought it that if she will be positively effected by the program we should see the benefits immediately. I can say that she had a much better day today than she had had in a long while. She was very organized (settled) and very tantrum free. Was it a fluke or was it the brushing??? We shall see!

Brushing

I spoke with Abby's OT today about everything going on with her and the OT has asked us to try the Wilbarger brushing program for 2-3 weeks and see if it has any effect on her. She has always been resistant to brushing and favored joint compressions but at this point I am willing to try anything that might work.

I go in to school on Wednesday morning to have a training session with the OT on the specifics of the program.