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. 

Just Like Riding A Bike

There is nothing more exciting than the first time those training wheels come off. Sure, every kid will fall a couple of times but they will get back up and try again. Within hours many kids are off to the races. Except, if that kid has Rhombencephalosynapsis. Learning to ride a bike and manage balance is a challenge for all kids. Imagine trying to learn this new skills while struggling to maintain balance on two feet!

Well, that is why watching this video sent to me by Heidi of Ethan mastering two wheels brought tears to my eyes. Go Ethan, Go!!!!

RS and the perils of being a twin

Most of the time being a twin has served Abby very well. If it weren't for Grace hitting milestones on time I am not sure we would have realized so early on that Abby was behind. I doubt she would have crawled or walked when she did had she not had a sister to keep up with. There are things like running track, swimming, climbing at the playground, etc. that we might not have done had Grace not been more developmentally age appropriate.

But every once in a while it back fires. Like tonight. Grace is a great swimmer. She has been swimming since she was four. Abby is a good swimmer although her awkward development means awkward swimming. If you throw her in the middle of the pool she can swim to the side (thank God) but it isn't necessarily pretty.

Grace has practiced all summer and tonight she passed her diving board test. She had to swim the length of the pool freestyle, tread water for 30 seconds and swim back. This is not easy as we have a big neighborhood pool. It is actually a feat few 6 years olds accomplish at our pool. While Grace was swimming Abby was her biggest cheerleader. After she passed Abby was hugging her and cheering for her. She was the first in line to watch her dive.

Then it dawned on her.

Grace accomplished yet another thing that she did not. She got passed by. Her "disability" slowed her down. Although not entirely true because Grace is a physical anomaly for her age but still...

That's when the tears start. And the snowball effect happens. It becomes all too obvious that she is different. She is slower and weaker and can't do everything that she wants to do. In those moments the fact that she has come SO FAR means absolutely positively nothing to her. And that isn't easy to watch.

Lucky for us those moments are few and far between. But when they happen... we all want to cry with her.

Posted by Kristen Fescoe

A few things I've learned

The past almost six years have taught me A LOT of lessons. Here are a few of the things I have learned along the way.

The Good:

1. It isn't as hard as I thought it was going to be. 
2. It isn't as bad as I imagined it. 
3. It isn't as rare as they had us believe. 

The Bad:

1. It isn't easy. There are a lot of tough days. 
2. Watching life be a little more difficult for your child is hard. Really hard. 
3. Parenting is hard. Parenting a round child that doesn't fit in a square hole is harder. 

The Ugly:

1. You will spend more time in a doctors office that you thought possible.
2. You will know every nurse, office assistant and doctor by first name. 
3. You will wonder if life will ever get easier (see above... it does!)
4. You will question EVERY. SINGLE. DECISION. you make. 

Posted by Kristen Fescoe

Never walk, huh?

I can still go back there in my mind. That moment when I realize my baby would NOT BE NORMAL. First it was that horrible, wordless ultrasound. Then it was the meeting with Dr. "Gloom and Doom" when he outline for us all the things our daughter would likely never do.  

"She will most likely never walk or talk" he said.  

"It isn't likely that she will be able to think normally. " He continued. 

And I swear that it was in that moment that my girl decided to stick up her middle finger at the medical establishment. From that moment on she has been nothing but a medical miracle. 

My girl is running track. And every time she rounds the corner at full tilt I want to cry. That tiny baby who would never walk IS RUNNING. FAST. 

She is kicking ass at the long jump. My tiny little peanut (she's all of 3 foot and some change) jumped 5'2" at the last meet. 

She is kicking ass and taking names and I couldn't be prouder. So the little girl that needed a walker and a helmet (she still needs it on the playground at school) and surgery and therapy and a team of doctors is part of a team. She's one of the most popular kids on her team. She amazes me. I mean, seriously, literally, truly amazes me. She might fall on her face every other practice but she jumps up, laughs it off and KEEPS. ON. RUNNING.

We all need to keep on running.

Posted by Kristen Fescoe

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

Travels to Family...

Written by Heidi:

We recently got to travel back home by way of an 800 mile car trip west to visit our family for the Thanksgiving Holiday. We haven't done this for 3 long years. Several excuses, we are very busy, work and school get in the way, along with therapy, doctor visits and extra outside activities that the boys are involved in.

One thing that does happen as we travel is Ethan's vestibular gets set off (more than usual) and we always seem to have a few days of a "reset". Also throw into the mix being in a new environment around new people. I always worry how this is going to turn out. Surprisingly this time wasn't too bad. We decided to throw caution to the wind and abandon our typical routine. Not daily eye exercises, Theratog or Therapeutic Listening Headphones. No daily balance on his knees or exercises. What we ended up with was a relaxed trip!

What my poor father-in-law ended up with was a little shadow for the week! :) Poor Grandpa couldn't go anywhere without Ethan on his tail! And I forget that although we are so use to the falls and trips that happen throughout the day, those who are not accustomed to this sometimes feel like it is their fault.

There was particular day that Ethan was with his Grandpa and he had fallen nose first into the coffee table (bruise on nose), had scrapes on hands from a fall in street from a walk the night before, and then fallen suddenly in the street as they walked back from the park resulting in a bump and bruise on his forehead. My poor dear father-in-law was overwhelmed. The poor man felt like it was his fault. We assured him this was completely normal and was really so much better then it use to be. I guess we are so used to it, it just doesn't faze us. Unless there is a pretty good scream or cry associated with the fall or cut we know we just don't need to react.

I am so proud of how far Ethan has come. Five, four, even three years ago we were in such a different place then we are now with this child. We know when we travel what to expect. He is going to be off a little. His strength continues to improve and we continue to work on things that come up. I can't imagine what the next 3,4,5 years will bring!!!

Another thought on accommodations

Written by Heidi:


Our Accommodations
(working off Kris's thoughts)

Unlike Abby, Ethan is not to far behind on stature so our accommodations aren't the same. He is also a year older and I hate to say it, but boys due tend to be stronger and I wonder if this can make a difference in the RS world. So we have made the decision to make fewer accommodations for him.
(After reading Kristen's blog I may sound mean :-( )

We choose to try to have him develop his skills without much aide in hopes that he would not feel the frustration when he was not in our “home” environment. He too struggles with hanging up a hand towel, more so because of balance issues than stature. It sure takes some midline coordination to do this. Many times I find it on the ledge of the sink. My thoughts, I'm so glad he used it! It means he washed his hands :-)

I actually never thought to add the extra handrail on the stairs that one I would of liked. It may have been a blessing in disguise however, as I'm sure his older brother would of found a way to wedge and slide the cats down between them.

This brings up another thought, how much effect is there because Ethan is a second born and Abby part of a first set. Could this be why we choose to not accommodate too much for him? You have to take in consideration that you cannot change the older siblings life too much. They are already going through their own issues with having the new kid on the block being "special". Travis also had 6 1/2 years as an only child. He was the "special" one. Come to find out "special" doesn't mean the same to a kid as it does to us adults regardless if the word needs is followed by it.

Now that's not to say we didn't make some changes. We still have the bumper pads around the fireplace. ALL around it as it is slate. this has saved more heads then just Ethan's. We also added handicap rails in the boys bath with a great horizontal low one on the back wall he can grab to get in and out ....we do however have to remind him to use it! Sigh...we also still have a special stroller. We did use a gate at the top of the stairs for a while so as he ran around up there he didn't trip and go head first down. Now it’s just used to keep the dog out of trouble at night. We no longer need a helmet! :-) :-) :-)

School has also made their own accommodations for Ethan. Once you add a crew of youngsters together the level of safety rises. He rides the special needs bus, at least for one more year. They use to have a chair with arms on it (no longer needed), he does have to wear his helmet at recess and PE, but hopefully just this one more school year also. He either has to be in front of a line or last to avoid tripping and falling when navigating through the halls.

Other then those we haven't changed much in our house.

The fine line

Many days I feel like I walk along a lot of very narrow, very high wires. As a mom (of more than one kid) I do a lot of juggling and negotiating and figuring. This week I took the girls to the park to get some energy out. Grace, the social butterfly, made friends with a large group of kids within five minutes. Abby, however, played spectator. This is the usual process for my two kids. On a good day Abby will jump on Grace's coat tales and play along with the other kids. She will often be in the background but she'll at least play. On bad days she will pout that she doesn't want to play with OTHER KIDS.

On this particular day Grace had the group playing superhero (within two minutes) and Abby wanted to be a princess. She asked if they wanted to play princesses and they all (in unison) said "NO". Abby cleverly responded with "well super heroes do need someone to save". :) They then ignored her. That's when my fine wire for the day appeared.

Do I urge grace to include her? Do I let them figure it out? Do I just sit and watch while Abby is on the outskirts for the millionth time? Do I give her the words to use to get involved? Do I let her learn on her own?

It felt like a bit of a lose-lose. I ended up letting her find her own way. She played "parallel" to them but never got involved. It pained me to watch her struggle socially... It always does. It's hard to explain what its like to parent a child with such social awkwardness. You feel like you just never win. She's not the shy or introverted type. Nor is she the typical awkward, goofy kid that just can't fit in. She just doesn't have the right tools to get involved with a group.

I guess the best approach is to keep the end goal in mind; a fairly well adjusted adult and do the best that you can.

Feeding Issues

Another one of the issues that has been asked several times by new parents of kids with Rhombencephalosynapsis is whether or not RS kids have feeding issues. The short answer here is usually but the longer answer is that RS kids have feeding issues that run the full spectrum. There are kids with RS who require feeding tubes long term. I can speak to our experiences but know that ours is a more mild case of feeding issues.

Abby started life with an NG tube. She was 4lbs 14oz at birth and lost weight immediately. Within two days they put in the tube. She would attempt her feeds by mouth and get the rest through her tube. We weren't thrilled about it but the docs wouldn't let her go home until she was 5 pounds and took a certain amount of high cal formula at each feed.

Once she came home she remained on the high cal formula supplemented with breast milk. She was never able to nurse because her suck, swallow, breath reflex was so immature. Over the next few months she would take a bottle but it would take her up to an hour to drink just a couple of ounces. We had her assessed by a feeding specialist but they couldn't come up with anything conclusive. They called it a weak suck reflex, gave us some strategies (we were already employing) and sent us on our way.

When we started to introduce solids we learned quickly that she had a very severe allergy to milk, eggs & blueberries. She can neither eat OR touch them. (She is still severely allergic.) Food allergies are not a very common issue with RS so we're guessing it was just an Abby thing.

She did learn to eat solids but has always had an extreme tendency to stuff her mouth very full. She also flaps and head rolls quite a bit during meals. She is an EXTREMELY messy eater which is something we had to learn to deal with. She still gets OT for her feeding but they have made only fair progress. She eats with little assistance but it is a messy endeavor.

I think it's more of a frustration for me though. I don't know that she has any issue with how she eats. We're just hoping to get her a *little* neater and more efficient before she begins to notice.

Big, Little Sister

As Abby gets older and more mature she has begun to notice some of the subtle things that make her different from kids her own age. Her bald patches. Her flapping. The way she can't quite keep up. Her falls. The thing that bothers her the most is her small stature. She is almost five and she weighs 32 pounds. This puts her in the 6th percentile. She is 39 inches tall which puts her in the 5th percentile.

At this point her docs are pleased that she is ON the charts at all and that she's following her own little curve. But try telling her that. She has a twin sister who weighs about 8 pounds more and is about 3 inches taller. When people comment about how much smaller Abby is she will often burst into tears. She has been known to yell at people that she is, in fact, THE OLDER SISTER!

We have started calling her the Big, Little sister. She may be smaller but she will always be one minute older. Sometimes it helps, sometimes it just irritates her. Most of the time we just ignore it but sometimes it makes me a little sad. Not that she's small, that part is just fine by me (I was always the smallest kid). That it bothers her. That's what gets me.

No matter how hard we work to "normalize" things for her she will always be a little "different". It was a heck of a lot easier when she didn't realize that. We do not take the approach of babying her or trying to explain it away. Being different is just fine and that's the approach we take. I just wish there was a way we could make it all easier for her.

Pain Tolerance

Another topic that has been asked many times regarding kids with rhombencephalosynapsis is their pain tolerance. Many parents report that their RS kid has a higher than normal pain tolerance, especially when it comes to head injuries.

Abby is no exception in this area. She has a MUCH higher than average pain tolerance. We laugh in our family (and yes, I realize how cold it sounds to laugh about such things... life with RS I guess...) when Abby will take a spill, jump up and announce "I'm ok" or "no blood". She has learned, from years of falling, that pain comes in varying degrees and the small stuff is nothing to cry about.

She has hit her head so many times that we believe she has basically scarred her cranium. She can hit her head and barely flinch. She has gotten more eggs, bruises, cuts, scrapes and dings on her head than anyone I have ever met. The fact that she is still as smart as she is after what are probably a fair amount of mild concussions, is nothing short of miraculous.

We have never bothered with officially testing her pain tolerance. Our docs tell us their are ways but as far as we see it what's the point. It's fairly obvious that she is tougher than the average kid. She may be small but mighty!

The next bball star

Abby's PT (at school) has devoted a lot of time this year to her arm strength. We are starting to concede (a little) that her balance will only come so far. So with that concession made we have decided to do everything in our power to make her balance less of an issue. Strategy #1 is to improve her strength, specifically her upper body. Stronger arms mean better ability to hold on and better ability to brace for impact during falls. It isn't great on her arms but it sure helps her head.

We have seen some very small incremental changes throughout the year but nothing too major... until this weekend. The NJ weather has been extremely kind this winter so we have been able to enjoy lots of outside time. This weekend the four of us were in the driveway playing basketball. Our next door neighbor (we share a driveway) has a full size hoop and we put a kiddie hoop next to it.

The girls were taking turns throwing their little ball into the small hoop. We quickly realize, much to our dismay, that tiny way kicking Grace's butt at throwing a basketball. Bear in mind that Grace is an incredible athlete. She is fast and strong and oddly coordinated for a four and a half year old. And yet, Abby was throwing the basketball with better control and accuracy than her "bigger" sister. You could have knocked me over with a feather.

So it seems the hours and hours of work are starting to pay off. Now if we can get her to grow a little maybe she'll have a future in the WNBA. ;D

Mechanicrawl

During the course of Abby's PT she took a lot of weird paths. She could do more difficult things before she could do simpler things. For instance she could sit up (in a Boppy) before she could roll over. It was all part of the way "she is wired". When she started to crawl (at around 13 or 14 months) we were amazed at her progress. We didn't think she would crawl for a couple more months but she decided she was ready.

The funny part was that when she crawled she looked like a robot. It was mostly because it was a completely "taught" skill. We had spent months working on it in PT and teacher her how to manipulate her body so when she finally crawled it was a mechanical motion... not the natural one of most babies.

We fondly named it "The MechaniCrawl"



**Hope you enjoyed the bonus material of the Grace temper tantrum. :D

Early PT

A lot of people, in the past, asked a lot of questions about what PT looked like for a baby. We think of physical therapy in terms of building muscle and training our bodies. But when you are working with a six month old how can this possibly be done. In Abby's life she has had four physical therapists and each has approached her "condition" a little different. Some insisted on pushing her (which we LOVE). Some let her off the hook more than we would like. But all have done pretty amazing things with her development.

I recently came across some old video's of us working on her PT at home. She was about 8 months old here and working on rolling over.



And, yes... we were using food as a motivator. :D It doesn't look like much but it is a specific body motion geared towards rolling over.

This one is from when we were teaching her to sit up on her own. She was about 13 months when she mastered this skill. It was a completely taught skill. She had no ability to do this on her own.



The last one is at 13 months working on sitting up from laying down.

Language Development

On to the next question I wanted to get to. Language development...

When I was pregnant with the girls I was told that Abby might never speak. Because of this we spent some time learning how to use basic sign language. As the girls got older they learned to sign beautifully. They were able to communicate their basic needs with their hands. It was great!

We were very surprised when Abby started to talk. AND TALK AND TALK AND TALK! (Oddly Grace ended up being the one who needed help with her speech.) Once she started talking she never stopped. LITERALLY! The kid talks and talks and talks, non-stop.

At one point she developed what they called an ataxic stutter. She would mildly stutter many of her words. Thankfully it remit before she ever needed speech therapy. Now she gets speech therapy only in the form of a speech group at school.

So all in all speech development was one of the few areas that Abby excelled in from early on. I guess what you lack in one area you DO make up for in another. :D