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. 

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

Stupid Friend

One of the less talked about parts of Rhombencephalosynapsis is the social aspects. I think this is an area that vary greatly from RS kid to RS kid. But from talking to other parents I think this is an issue for many RS families. Many kids with RS have social skills that may be lacking. For Abby this is definitely the case.

In preschool one of her primary IEP goals was to make and keep 1 friend. (Can I tell you how sad this was as a parent???) She is usually the kid, in a group setting, who either hangs by herself or finds the nearest grown up to talk to. She will play alongside others but rarely with them. Even when Grace is playing with a group and invites Abby in she will stick to herself. The only person she really played well with until recently was Grace.

In four-year-old preschool she did a little better. I think the small class size (7) and familiarity (all the same kids as 3-year-old preschool) helped quite a bit. She was able to make friends and play with others. It was great progress. That being said when she meets new people it is usually a debacle. She will often have inappropriate interactions. It can be anything from avoiding a person and not responding to them to more overt responses like making rude comments, being mean, becoming oddly obsessed with people, etc. We always say that Abby lacks her "social filter". That little voice inside your head that helps you figure out what to say and what not to say is missing in her brain.

This year she has had the opportunity to make friends in her new class. She is in a multiple disability kinderclass so the kids are less "challenging" for her. Her best friend is Tori. Tori uses a walker and is the first kid Abby has encountered who is slower than her. I think that is a draw for Abby. Being able to relate to her socially and not worry about keeping up with her physically is a game changer. She simply adores Tori. She talks about her non-stop and just loves her to pieces.

Unfortunately her adoration can be a little much. Because she lacks that social filter she can often go way over the top. Tori doing something an inane as choosing to play with someone else can be a personal affront to Abby's social sensibilities. This week when Tori chose to play at a different "center" than Abby, Abby called her a stupid friend and started to wail. I feel so blessed that her teachers know exactly how to handle her. But it still makes me sad.

We live in a social world full of social beings. Parenting a child who struggles with the most basic social situations (like meeting someone new) is hard. You spend half your time explaining her "odd" behavior to people who really don't want to even try to understand. I also fear for her later years. Being a teenager is awkward enough. Being a teenager with physical and social issues could be excruciating. We just choose to take it one day at a time. One social interaction at a time. Plus, we pray... A LOT. :D

Posted by Kristen Fescoe

Head Rolling

Abby has a fair amount of tics and involuntary movements. She flaps and spins and rolls her head. She has facial tics and other sporadic movements. Most of the people around her don't even notice she does it since we are all very used to it. Any time she starts something new (like a new year of school) we are reminded that, although it's normal to us, it is not typical to have these movements.

For the most part it doesn't bother her. She rarely complains. Every once in a while I look at her as she rolls and rolls and rolls her head when she tried to watch tv or look at a book it makes me sad. It must be so hard to not be able to sit still when you want to. She has some strategies to help (like folding her hands or sitting in certain positions) but they only minimize it. She can't stop it completely.

We were recently sitting watching tv and I had a free minute to tape her watching tv. This was a very mild case of rolling since it was during the day. By nighttime she can barely watch tv.

People don't realize

Reading Heidi's post got me thinking. When parents raise small children they run into their fair share of issues when it comes to visiting new places. Kids tend to wander. More falls tend to happen. They can get off schedule.

When you raise a child with RS you have the typical problems PLUS a whole set of other issues. Next week our family leaves for our annual trip to the beach. I have to make sure I am prepared for the usual issues with sun and sand and the ocean. We pack our sunscreen and our puddle jumpers (life preservers) and our toys. But what people don't realize that for a child like Abby (or Ethan) we have to think way beyond that.

A normal kid can bound through the sand by about age two or three. At age five Abby still struggles. By three Grace no longer needed a stroller to navigate the boardwalk but at five Abby still needs hers after a few blocks. The shift in her sleeping schedule means that her sensory system will be good and turned upside down by the second day.

It's not that we don't have fun because we TOTALLY do but there is so much planning ahead. We know that there will be more falls than normal. We know that she will be more frustrated than normal. And we know that in order for all of the family to enjoy our vacation we have to work twice as hard as we would if we had kids with no special needs.

I am just not sure that people realize that even on vacation, or our lazy days at the beach or a simple trip to the mall that so much goes into parenting a child with special needs. Most of us RS parents pray that we make it *SEEM* effortless (;D) but trust me, it isn't.

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.

Some regressions

As a parent of a child with RS we have always made sure that we keep Abby moving forward. No matter how slow her progress the docs and therapists have always been pleased as long as she is moving forward. For probably the first time in her life she has taken a few steps back. Her fine and gross motor skills seem to have slightly declined. Her self-feeding skills have backslid tremendously. Her social skills (which really were never good) seem to be on the decline and her sensory system is all out of whack.

I have talked to her OT and PT at school and they are seeing it but somewhat at a loss. We are considering finding a private OT to help work on her skills to make sure she doesn't backslide any more. When you make continual progress it's really tough to see any regression.

Hopefully it is temporary. It could be a growth spurt (which always make life a little tough on her). It could be issues with something like inner ear fluid. Who the heck knows. Hopefully we'll figure it out... soon!

The Sensory Side of Rhombencephalosynapsis

It took us a while after Abby's diagnosis to realize how many of her needs were sensory. We could minimize the flapping and head rolling by making sure she got plenty of input. Her tantrums were significantly better on days where she spent LOT'S of time outside. Outside time for Abby equals "input". All that "input" really means is information being put into her sensory system... taste, smell, sound, feelings, sights and the less known about sixth sense (not psychic powers but...) which is the proprioceptive sense. Simply put it is monitoring our bodies internal and external structures.

Since beginning a sensory diet for Abby things have improved for her. Her sensory diet includes plenty of heavy work, brushing, joint compressions, squishes and squeezes and rough play. Recently I was talking to a fellow RS Momma, Heidi about her son Ethan. She was explaining how her was having regular tantrums when being cared for by his new caregiver. She also mentioned that on weekends when Ethan is getting more "rough play" his tantrums were less prevalent. I pointed out that perhaps Ethan was more of a "sensory child" than was initially thought.

Here's how I see it. We have this idea that "boys will be boys" and that all boys like to play wild and rough. Here's the problem; because we hold this ideal it's easy to overlook the fact that some of those rough and tumble boys (or girls for that matter) may be more sensory seeking than just playing rough.

Heidi did what we RS parents have to do, she took the less traveled route. Instead of consulting with specialists and doctors she did what was right for her child. She instructed Ethan's caregiver to play rough. (Imagine that moment... Mom tells caregiver to play rougher with her kid. ;D Sometimes being a Mom of a special needs child requires a whole lot of creativity and ingenuity.) In the two weeks since this conversation happened Ethan has had NO tantrums with his caregiver. Incredible! It amazes me that something as simply as wrestling on the floor or climbing on a jungle gym can make such a big difference.

The brain truly is an amazing thing!