Realizations

As Jack progresses through various stages of infancy and toddlerhood it has been remarkable how different our parenting experience has been. Instead of worrying about scheduling surgery or losing weight or finding the right therapist we worry about him falling when he runs too fast, whether his shoes still fit and when we can fit in a haircut. "Normal" stuff.

Brian and I also find ourselves asking "did we ever get to really enjoy it with the girls". I first I felt guilt for even thinking it. Of course I adored the girls so much but I think I spent so much time worrying and stressing that I barely ever sat down and just enjoyed them being in certain stages.

The more I sit back and think about it the more I get angry. Angry that RS took that from us. Angry that RS made us less present parents for our girls. Angry that I could have been more fun, engaging, energetic and creative had I not been worried about all the other crap.

Fortunately I am not one to dwell too much on the past. And all I can do at this point is never let RS steal another minute from my daughter or my family.

Posted by Kristen Fescoe

She's disabled?

As a parent of a child with Rhombecephalosysnapsis I find myself doing one of two things (more often that I would like to admit): 1) explaining why my child is "normal" and just like everyone else or 2) explaining why my child is disabled.

You see, RS is a funny thing. Unlike many other disorders if you look at a person with RS they often look close enough to "normal"  that you wouldn't take notice immediately. There are some visible issues at first glance. The bald patches. The tiny stature. The odd body makeup. The large head. But it isn't grossly different than a typical person.

It often isn't until they take that first big spill or start spinning or flapping that people around you realize there is something different. The frustration is that in my experience half of the people I encounter want to sell me the line of "but she looks so normal". At first I used to take this as a compliment (and from the right person, I still do.) But in some cases it is as if they are accusing you of making up a fictitious disorder. You find yourself explaining the disorder and what goes along with it.

On the other hand I also come across plenty of people who see her big head, tiny body, spinning around, flapping hands, etc. and look at her like she has rabies. To those people I want to scream "She's a normal little girl".

Yes, I do realize how much I am countering myself. And yes, I am talking out of both sides of my mouth. So, you ask, what DO I want? I think what I want is the same as any mom of a child with disabilities. I want people to ask questions (politely), gather information, get informed and then treat her like any other kid. Don't minimize the past six plus years and all of the hard work and time we have put into getting her where she is. Don't treat her like she is an oddity either.

I think all parents of special kids just want a little curiosity and a lot of acceptance.

Posted by Kristen Fescoe

Clear your plate!

One of the many balancing acts that parents face when raising kids who are atypical is how much they are truly capable of. Most kids with RS learn early on that they are occasionally able to use their diagnosis to their benefit.

When Abby started school it took her less than a month to discover that if she wanted out of an assignment she could claim to be tired and voila, excuse given. She has used this to her advantage many times over. 

Here at home we are wise to her game. That being said we walk the tightrope between what chores a typical kid can do and what she can handle. Take for example doing dishes after dinner. Grace can clear all of the dishes, put things in the fridge, load the dishwasher, wipe the table and clean around and under the table. Abby struggles with some of it. Clearing dishes means falls (and spilling). Loading the dishwasher means dropping dishes. So the struggle is do we have her do the work so she learns or do we avoid potential falls, messes and broken dishes?

We have opted to push her. It's messy and frustrating but later on I think it will pay off. Plus she can never accuse us of treating her different than her sister. 

We have similar struggles with dressing herself, putting on coats and hats, folding laundry, buckling her seatbelt and many others. While it would be way easier for all of us (right now) to do it for her I don't think it would help her in the long run. 

Posted by Kristen Fescoe

A stroller? A chair? What now?

For years we have used an oversized joggin stroller for Abby when we take outings that require a lot of walking. He still tires very easily so it is a must. In the past couple of months we've noticed that she is quickly outgrowing her buggy.

So the question is 'what now'? We have hesitated in any type of chair because I don't think she would love it. That being said being 6 and in a stroller isn't making her really happy either. What people don't realize how expensive a chair can be. Her stroller ran us almost $300 and despite the letter of medical necessity our insurance company paid nothing. We fear that the case would be the same with a chair. 

So for now we're back to the drawing board. And she's stuck in her stroller.  

Posted by Kristen Fescoe

What I've learned

Written by Heidi:

What I've Learned:

As a parent to a child with a rare brain disorder I have learned a lot. Leaving aside all the medical information I've had to self teach I also feel like I have studied:

• 101 Therapy: PT, OT, ST
• Design A Safe Room, ( this class is a 2 part, Long Term and Immediate Walk Thru For Visiting)
• Safety During Meals (including dinners out, it's not just forks and knives that are dangerous)
• Rules of Engagement (as RES has limited vocal filters)
• Dealing With The Know It All's (this can include friends, family members, doctors and those complete strangers that tend to pop up wherever)
• SPD 7.0 (I've only gotten to 7.0 as Ethan is 7 and this is an ever changing issue, I'm sure I will have more courses on this one)
• Balancing Act (you can't just be able to juggle 3 things...I thinks it's 5 for him, 3 for me and 10 for things ALL around)
• Organization:  More then meets the eye! ( thought you were organized before...think again)
• Designing an IEP: class includes designing for those that meet... oh wait...none of the check boxes...ok redesigning  IEP's,  
• Siblings:  how to get an older sibling to be kind... ah yes they fight....All the time...I've failed this one...don't ask me how.
• Holiday Decorating: hmmmm can that decorative pillow be a trip hazard...why yes it can!
• Fashion Design Fun: including what to wear to match those helmets and compression suits.
• Falling, How To Not Over React: The toddler Years: this course is developed over a period of time as 75-100 falls a day are the norm but lessen over the childhood years but never seem to go away...
• Parent Body: this includes how to use your arms, elbows, hips, feet, legs, head and shoulders as an ever present bumper for those 75-100 trips and falls each day.
• Knowing You Don't Know It All: how to deal with the unknown as no one can tell you what to expect ( our neurosurgeon on our first visit,  said what the hell is this)
• And yes, I'm aware that most of these courses can be geared to raising an  average child. But those that are raising the Special children, trust me when I say life college becomes a bit different.

Blindly Living In Safe Mode

Things were going so much better for Ethan. The summer was spent doing A LOT of therapy. We completed a Metronome Therapy that improved his balance and attention span dramatically. "Back-to-school" went smoothly and we were back into a routine of school and therapy with just an added Speech Therapy for a few months.

So we spent this weekend around our school systems Homecoming. Ethan was looking forward to the parade and football game. This would be his first football game as we have been hesitant in the past of steep metal bleachers but the time was right. All day we kept going back and forth do we go, do we not. It had been an eventful weekend already with finding a snake in the kitchen Friday, glass in my foot Saturday prior to some morning festivals at the Primary school and we thought let's just stay home and Veg...Why O Why didn't we stick with that thought...

During the second quarter we made a restroom run. Heading back he let go of my hand as I spoke to a friend I met up with and he headed up the bleachers to his dad without me. He has been fighting hand holding still as apparently "No 7 year old wants to look like a baby!" AND it happened...he tripped over his feet and WHAM!!! head first into the corner of a metal bleacher. Heart stopping and I knew by the force and sound this was not going to be a band aid repair.

As he turned with his hand over his forehead I took it away and whoa...blood...spurting...and I clasped my hand over the gash. Ethan then looks down to his hand and sees blood and starts crying. I look up to my husband and shout get the chairs, we got to go, then turn and head down the stairs. With one hand clasp to his forehead and feeling the pulsating of blood on my palm, grasping with the other arm around his chest I move quickly to find help. My friend is ahead of me and is trying to wave down a medic on the field and I approach 2 police officers and they immediately call for the EMS team on the field. After "briefly" giving a  medical history on him they load him onto a stretcher, and my phone rings. It's our older son...Damn!!! 

He had left to get Ethan a hot dog and poor kid returns to find his family and stuff gone. My friend takes control and decides to go be with him, as I follow the stretcher to the ambulance and my husband goes to get our van and meet us at the ER. The Student body in the bleachers give a cheer to the little guy, and my phone goes off again...our neighbor girl asking Ms. Heidi is that you, what's wrong...then  my text starts to go off, another neighbor and friends asking is that us heading to the ambulance...and so it goes,

After arriving at the hospital and a CT Scan is ordered the decision comes down to stitches or glue. Ethan is adamant ..NO stitches! As the docs decide on which way to go, the tech arrives for the CT. He says, What's going on... and Ethan responds with, What do you think...I have a hole in my head! 

The Docs decide on glue and butterfly and begin to clean the wound...I'm watching and thinking no way...I see skull! Glue is not going to work! Just then, yep...change of plans to stitches. But even  though he's not liking the stitches idea, he ends up falling asleep during it after they burrito him As he is use to deep compression it's a comfort to him and not a fear. So Stitches done!! let's go! Nope! they now can't rule out a possible skull fracture from the CT... So it's off via ambulance to the Children's Hospital for 24 hours of observation for a seizure.

After hours in the Children's ER and many, many, docs coming thru they decide after 8 hours to place a neck collar on him, an IV (which he slept thru both of those). One Trauma doc tries to wake him to check his pupils. Ethan has not having any of that, and Doc says why isn't he opening his eyes..my not so nice response.. He's 7 and it's 3 in the morning!! 

So we are transferred to the PICU for the remainder of his visit. After 1 hour of sleep for me, his second CT Scan is done and we wait for someone to read it. One doc comes in, Spine and Cervical look good but have to wait for the brain scan...Finally the head doc is out of surgery, reads the scan and the good news is no apparent skull fracture and no blood on the brain!!!!  Ethan is released with one heck of a story, a few stitches, a neck brace for his bear and a couple ambulance rides.

After looking back, Ethan's balance has been worse...he fell at school on Thursday scraping up a hand and breaking his glasses...he has been eating us out of house and home...so it's possible that a growth spurt has set him into unbalance mood (more than usual) . So what to do...I guess we go back for another game! Poor kid missed that one!

Advice

I started writing this blog because when Abby was first diagnosed I was lost. We were told the rarity of this diagnosis and basically told 'good luck' finding any information let alone other families living with Rhombencephalosysnapsis. So there I was. With this baby who I didn't know if she would ever walk or talk, her twin sister and a diagnosis I couldn't even pronounce. The coming months and years would show me just how wrong the doctors were (and continue to be). First there are other families out there. I have found so many wonderful families living with RS just like us. We share stories and we hold each others hands through appointments. We share things that our doctors would never know. We are a family. They were also wrong about my girl. She walks! She talks! She sasses and makes a mess of her room and eats before prayers and gives me attitude. When she was a baby I would have paid any amount of money to know that the little helpless baby with crossed eyes and who flapped and shook her head would give me attitude and complain about her outfits.

So when I get posts like these: pseudopabloOctober 9, 2013 at 12:25 AM

Hi, we have an 8 month old son who was diagnosed with this when I was carrying him. When he was born he didn't seem to be showing any symptoms but now he's older things don't seem to add up with him, he has started head shaking its been going on for months and consultants, specialists, GPs don't know what it is ? He also has bouts of screaming, we were hoping for some advice from someone who lives rhombencephalosynapsis just as we do. Thank you
Natalie

I want to cry. (Pseudopablo... please don't feel uncomfortable. We've all had this moment of feeling along and isolated.) When I think back on how isolated, afraid, anxious, sad, frustrated and confused I was I just want to cry for my old self. I want to throw my arms around myself and parents new to the diagnosis and tell them IT WILL BE OKAY. IT WILL BE HARD BUT IT WILL BE SOOOOOOO MUCH BETTER THAN YOU THINK IT WILLL. You are going to be shocked how capable you and your baby are. 

Our kiddo's are oddballs. They flap their arms, spin in circles, cross their eyes, roll their heads, scream and cry for no reason and so many other things. Eventually we become pretty accustomed to these things. It doesn't seem like that's possible but it is. 

So here is my advice to you and any newly diagnosed RS family:

1. E-mail me personally so I can hook you up with the RS groups and you can connect with the other parents (my e-mail is in my profile). 

2. Educate yourself. I realized early on that in any room I was going to be the foremost expert on RS. Even when in the presence of doctors. Learn to be the expert and be verbal. 

3. Your child is going to amaze you. If you are willing to go the extra mile you are going to be stunned. 

4. Get a team in place now. The most important players on our team at that age were Early Intervention (OT and PT), Neurology (and keep going until you find one you like, Social work (ours was through EI and she was awesome), ophthalmology (our kids have a lot of eye issues), and a good parents of special needs kids group. 

I am here to answer any questions you have and if I had your e-mail I definitely would contact you directly. Just know that you are not alone!!!

Posted by Kristen Fescoe

Roller Coaster

Sorry for the repost from the other blog!

Last week was such a roller coaster we are still trying to recover from the ups and downs. We had the MRI and she did really well. By Thursday afternoon she was pretty much back to normal. She woke up Friday throwing up and really nauseous. When I called the pediatrician for the results of the scan I mentioned the vomiting. The combination of the brain issues and the vomiting put them into panic mode. I was thoroughly irritated. They wanted us to rush her to the CHOP ER right away. I was politely trying to explain that if we rushed her to the ER every time she was dizzy or nauseous we'd be in the hospital weekly. I realize that they feel overwhelmed by her rare diagnosis but it was a little frustrating.

What thoroughly frustrated me is that the nurse was telling me that they did not have the results, they were never sent to them. I explained that since they were the office writing the script it had to be there. She told me (not so politely) that in the time it took her to track the results down and have a doc look at them I would have wasted the day and put my kid at risk. The lack of empathy or politeness just set me off. I was nice enough but had had enough. I asked her to please get the results, show them to the doc and call me back. Once glance at the scan would tell them whether we needed to rush or not.

I decided to call Abby's neurogeneticist at CHOP and see if he would be kind enough to take a glance at the results. The staff there was great and put in calls to a triage nurse AND the neuro geneticist. The neuro called me back within two hours. (The nurse at the pediatrician's office DID call back within half an hour to say they got the results... a little quicker than half the day I guess). The wonderful news was that the change on her scan since the last scan was minimal. We will have to talk specifics with the new neurologist tomorrow but overall there was nothing emergent. (Thank God!!!)

I didn't hear back from the pediatrician until 6 o'clock and she had NO IDEA what she was talking about. Obviously she was not comfortable dealing with the diagnosis.

So, it was a whirlwind. It was a long, scary, stressful, anxiety provoking week. I am not sure how we got all the way through it. So tomorrow we will see the new neuro and get the ins and outs of the scan. It sounds like nothing will require surgery at this point (again, thank God!) so we are very, very thankful!

Posted by Kristen Fescoe

My sweet, sweet girl

I write so much about how Abby has a knack for kicking ass and taking names. The kid is a freaking enigma 99.9% of the time. People who meet her CANNOT believe that she is a "disabled" child. And in honesty, most of the time, neither can I.

But then there are those few and far between times that break my heart. Like tonight when she had a massive allergic reaction to a food allergy exposure. And after her tiny body wretched out the contents of her stomach and she laid in the tub itching her skinny little body I wanted to either cry or climb into that bathtub fully clothed and comfort her.

Why is life so hard for her? How the hell is she going to be a teenage with all of her "Abbyness"? How is life going to treat her? How the hell can I protect her from it all? I try to remind myself that she is easily 100 times stronger and more resilient than I am. She is a study on toughness. But I am her Mom. I have watched her suffer through therapy, surgery, anesthesia, doctors, braces, glasses, shots, tests and so many other things. I have rubbed her backed and shushed her through so many tears but I had to sit there and watch EVERYTHING be harder for her.

It isn't fair. None of it. Not one damn minute. Thankfully she doesn't even know it. This is her life and this is how it is for her. But for this one tiny little minute I question why it has to be so much harder for her.

I don't know now but I know there has to be a why. I guess we just have to be patient and wait for the answers. I am just incredibly thankful these moments are truly few and far between.

Posted by Kristen Fescoe

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

Guilt

Heidi nailed it with her last post. Parenting a child with RS creates a situation filled with fear, guilt, anxiety and downright paranoia. All parents worry. We are pre-programmed to do so. Even the most laid back individual suddenly becomes a worry wort when their child takes its first breath. Compound this innate hardwiring with a special needs child and you have a recipe for disaster.

Throughout the past almost six years our lives have been filled with a myriad of ups and downs. We have our huge victories. First steps after years of PT. Climbing the stairs to the top of the slide with no help. Being able to climb into the van unassisted. But we also have our "moments". The times that we pray no one is looking. When she can't stop flapping or spinning in the store and no matter how hard I try I can't stifle the urge to tell her "STOP SPINNING AND FLAPPING!!!!" The times that she plants her elbow square in her baby brothers tummy and he squeals with pain. Although I know she can't control her lack of balance I can't help but remind her to "BE CAREFUL!!!"

It's not easy. We know that our children will fall, flap, spin, talk too loud, be inappropriate with people, lead with their head or elbow or boney knee. They will take too long to buckle their seat belt. They will spill food all over the floor at EVERY. SINGLE. MEAL. They will require numerous calls from their teacher, the school nurse and/or the principal. We know this. We are prepared for this. But no amount of preparation is going to make it easy.

Posted by Kristen Fescoe

Days I lose my patience...then the guilt sits in

Written by Heidi:

There are days when being a parent to an RS child is very frustrating mentally and physically and the patience is thin or not even within reach. And yes, I know this goes for all parenting! Yet the frustrations of being an RS parent are magnified. There are days that I feel like my body can't take another bump from him.

I know he can't help it, which makes me feel EVEN more guilty. Even as he tries to get up on the couch to sit next time me I am banged a good 5 to 6 times. Some of the time we are talking head-to-head contact (if I happened to be looking down) as he does everything head first. I remember when he first started crawling it was as if he threw his head forward and the rest would follow. Well that still holds true as he gets himself on the couch, in a car or even into bed. Sometimes, when he is standing next to me at the couch and if I dare to have a cup of coffee sitting on the end table I am constant guard of the drink being knocked over as he wobbles to and fro while carrying on a conversation.

Now of course I wouldn't change a thing about his milestones. I prayed for the day he would crawl. We mastered getting onto a couch and into a car and love that he can stand and carry on a conversation, even if its in constant motion and twirling. And at times, the guilty times, I wish he could stand without his world titling on him. I wish he could give a high five without missing and twirling around and sometimes falling.

But sometimes I do find myself yelling and saying watch out, don't bang into that! And then realize He Can't Help That! Why did I just say that? Ugh! Guilty mom!

We all have guilty mom moments. Did I really just do that and did I really just say that? Guess I have to say, yep, I did...and try to do a bit better...it's what I tell them to do...

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

What to expect when your expecting....

Written by Heidi:

"I know Kris has written in the past about their experience during their pregnancy. Within the support group on Facebook it feels that we all share such a similar story of our RS pregnancies and mine is no different than Kris's. As I first read hers I thought "did someone steal my story"! As we were going thru it we felt so alone! We were told by numerous and highly educated doctors that basically we were alone. There was essentially no literature to educate ourselves with. The one doctor who we thought would give us answers from handed us our son back and  told us he had never heard of it and if anyone told us they did they were lying to us. This was when Ethan was just 1 1/2 years old.

But let me back up: at our 5 month prenatal check up we took our 6 year old soon-to-be-big-brother with us to find out if he was going to have a little brother or sister. Little did we know we would be leaving with heart breaking news that his little brother had cerebellum issues, along with spina bifda occulta enlarged ventricles  and we were introduced to large words that would become a second language to us. The next weeks were a blur of appointments with specialists that knew nothing, had little advice with answers of 'we don't know' and 'we suggest that you terminate'. We felt like they were suggesting this because they didn't want to be held accountable for the unknown. We scheduled the next appointment and moved on trusting that God gave us this baby for a reason and we would do what we needed to do.

The next scheduled ultrasound left the specialist yet again scratching their heads as Ethan's ventricles had decreased slightly as they told us this doesn't happen. The pregnancy and his birth continued on this trek with highs and lows and lots of scratching of heads.

I got to thinking about this as I was messaging another new RS mom the other night. She was with her new baby and they are going through another major procedure so soon after being born. It seems that nothing goes easy for these RS kids. But somehow they trek thru it. How alone and isolated we parents can feel and have felt during it as the medical staff hasn't been able to offer much in this in the past. But I believe that won't be the case in the future. If I could of had another mom message me who truly went thru some of the same rare things that I did back then. Wow!. I can remember when I first read Kris's words. I got goose bumps! Finally I had a connection with someone! There was a family out there that got it! And thru face book I  have found many families that get it!

So if you are expecting and you have found this blog because you and your little one have been given the news with some pretty big words....and all those pregnancy books are now out the door come find us facebook. You can message me Heidi Swartz (Larson)"

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

Rhombencephalosynapsis goes to Disney World

As most of you know we just got home from a week long vacation in Disney World. The short version of the story is that we were supposed to go last Christmas but ten days before we left my Dad was diagnosed with Stage IV lymphoma and almost did not make it. Thankfully he is kicking cancers sorry butt and so we went. It was a perfect "victory lap" for our family.

We thought a lot in advance about what this experience would be like for Abby. Disney is obviously exhausting for any five year old but what about a five year old who tired from a walk around the block? How much would we have to slow down to accommodate her?

To try to deal with it in advance we rented a double jogging stroller from a local rental place (not the uncomfortable Disney ones). This would give her a way to ride from attraction to attraction while getting some rest. We made sure to pack plenty of snacks and drinks to keep her filled up with energy. We even resigned ourselves to letting her have some good old sugar when necessary. ;D This worked for about the first three hours.

We got into what would be our first long line and quickly realized this was not going to work well. Even though it wasn't that hot (about 75) we was drained after standing for half an hour. I started to panic at the thought of either holding all 32 pounds of her her through line after line (and killing my back) or having to sit out of rides with her. Neither one seemed like a good option.

I then remembered on the Disney site that they outlines the measures they go to in order to accommodate people with disabilities. Although we don't tend to think of her as "disabled" these are the times that her "differences" are glaring. I found a young woman working there and asked her about how we might be able to work around this problem. They were SO helpful.

She outlined what they like to do and she sent us to guest services immediately to get started. We informed them that we have someone in our group with a "disability" and we were given a "red card". This gives you access to the rides through the Fast Pass lines so you generally wait about ten minutes for a ride instead of an hour or more. They usually only write them for a group of 6 but we got one for our whole group. So at each line we flashed our card and walked right on.

For one short moment I felt a pang of guilt (not sure if that is the right word) about getting a "reward" for her disability but then I thought how much she deserved it. Should she have to miss out or be too exhausted to enjoy herself? NO!

There were still small matters like her food allergies and her balance winding through lines and the park itself. But since we took care of the larger issue of the standing we were in good shape.

Posted by Kristen Fescoe

Even MORE allergies

For the past three weeks or so Abby has been a hot mess. Her face has been broken out in a horrible rash (that looks like a burn) and she has been itchy non-stop. The past week or so it has gotten worse and worse. She has bumps on her chest, arms and back. Her face looked like someone threw acid on her. Despite all of our efforts with Aquafor, Benadryl, oatmeal baths, hydrocortisone, and many other attempts NOTHING has helped.

**This picture doesn't even do justice to how bad it had gotten. 

We decided to sit down and go through her diet and see what has changed. It became clear that the one thing she has eaten WAY more of in the past three weeks to a month are an organic bar called a Halo bar. They are something we found at Whole Foods and they are vegan. They are also free of blueberry and tree nut. I took a look at the ingredient list and the second ingredient listed was Agave. For those of you following along with the food allergy soap opera that is Abigail we (and by we I mean Brian, but please don't tell him that I am admitting he *might* be right) suspected Agave to be on her list.

This morning we didn't give her a Halo bar (she has one for breakfast every morning and one in the afternoon) and her skin looked clear. When the bus pulled up this afternoon and she got off I held my breath a little... A CLEAR FACE and no itching!

So I think we might have found our culprit. They do not skin test for Agave as of yet so for now we will add this to the strict avoidance list. I am just thrilled that we figured it out before she started scarring!

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.

To my sweet tiny girl

Dear Abby,

Tomorrow morning I send you off to your second week of school. I send you off for over seven hours every single day knowing that you smile when you leave but you cry while you're there. I send you knowing that being there all day long is exhausting you both mentally and physically. When you come home and tell me "I only cried once today Mommy" I smile from ear to ear and tell you I'm proud... on the inside I am sobbing. I HATE that I have to send you away from me all day. I HATE that you have this thing, this stupid diagnosis, that takes you away from me.

I wish your life was easier. I wish, like most parents, I could send you off for three hours each day and you could have a "normal" kindergarten experience. I hate not knowing whether I made the right decision to agree to a full day, special needs kindergarten. I hate that I am not with you to hold your hand when you cry. I hate that someone names "Mrs. Swanson", who I have never even met, wipes your tears away. I hate every single minute of it.

I think the hardest part, my dear girl, is how well you handle it. The fact that you never complain. The fact that you never say you hate school or don't want to go back. It's the fact that you just gut it out and deal with it in your own way that kills me a little. As much as I don't want you to cry or be upset I wish I could be the one hugging you when you are sad about it.

I know that this is for the best. You are getting the best education that we can possibly give you. You are in the best hands right now. But somehow that doesn't make it any easier. I pray that time makes this whole thing easier. I hope that you fall in love with your class, your classmates and your teachers. I look forward to the day when school is one of your favorite places to be. I just hope that day comes soon.

I Love You,

Mommy

Poor baby girl

My super trooper has gone (very quickly) for adoring school to hating it. She has voiced some concerns about being tired and going all day. She has said that she misses me a lot. Well... last night at 1:30 I heard her sobbing on the monitor. She does that when she has a leg cramp so I poked my head in to tell her I was grabbing tylenol and gatorade and she choked out "I don't wanna go to school tomorrow". I wanted to bawl along with her.

We weren't sold on the idea of full day kindergarten to begin with. It's a VERY long day for a kid like Abby who tires easily. She had been doing so well we figured it was the right move. Now, I just don't know...

We're not doing anything imminently. We have to see if it just the transition and if it gets better. We can't make any big moves right now. It just sucks to see her so sad. She cried ALL MORNING getting ready. Everything from not wanting to be away from me to saying she would be embarrassed to cry. It broke my heart. We did this all last year with Grace so you'd think it would be easier.

She reluctantly got on the bus crying her tiny little eyes out. I wanted to grab her off the bus and take her home. This sucks! Hoping she at least had a good day when she got there. Probably won't hurt that I went to Target while she was at school to buy her like five treats (which I don't ever do!). :D