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

MIA again

Sorry that it has been such a long while in between posts. The pregnancy has been a roller coaster (to say the least). Things seem to be settling down a little. The baby that survived the past few months is fighting like crazy and seems to be stabilizing quite well. Amen! So that means back on track.

I'd like to say the past couple of months have been smooth sailing for Abby but that would be a big fat lie. She's been a bit of a mess. We can't really put our finger on it but she has been an anxiety ridden, flappy, twitchy, twirly MESS. She's perseverating on topics for days on end. At some points in the day she is almost unreachable because she is going into "Abbyland" and we're struggling to get her back.

It could be that she's picking up on the stress of what has been going on with the pregnancy. (If you don't read my other blog you can read about what's been going on HERE.) We haven't told the girls yet but they're smart and perceptive so maybe they're picking up the vibes. Maybe it's that she's not sleeping. Or maybe it's just that her anxiety issues are increasing.

I am struggling with whether to spend the money to go back to the developmental pediatrician (baby head shrinker as we call her). She was great but didn't have a ton to offer us at this point other than meds. We just don't feel like we're to the point (yet) of medicating her.

It's such a huge struggle. When we were dealing solely with motor issues and finding the right walker or helmet or braces we THOUGHT it was awful. Little did we know that we were in the easy part (for us). Those days were a matter of gathering the information and finding the money. Now we are in this gray area of never knowing what is right. No doctor has the answer, no catalog has the cure. It's frustrating and sad and disappointing all at once. SO much of the time when she's in a "loop" I just want to cry. I can't help her. I can't reach her. I feel so helpless.

Hopefully in time it will get easier and the docs will have more answers. I guess we'll see...

Life with obsessions

Living with a child with obsessions can be challenging on a moment by moment basis. Many of our daily activities become interrupted by her obsessions. While we don't allow her to perseverate on them (when possible) it doesn't mean we don't have to deal with them on a moment by moment basis. Before they began I probably would have waved off the idea that an obsessive child could be so impacting to a family. All kids have obsessions, right? Every child has a favorite game or song or toy or food that they want to eat, play with, listen to, etc, over and over and over.

Wrong. All kids have preferences and favorites but "normal" children do not have full blown obsessions and anxiety.

Last week Brian went away on a fishing trip. While he was gone Abby fixated on our fish Hamster and the idea that Brian would bring back a friend for Hamster. We spoke every hour (at least) about how beta fish cannot have friends in their cage because they fight. Obsessions #1. We moved on to two days of obsessing over being Annie (from the movie) and fighting over being addressed as Annie and not Abby. She color (red) and number obsessed (Annie is 10 so she did a lot of counting to 10) all weekend. Also over the course of the weekend she remembered a scene (where Santa eats the gingerbread cookie) in the Shrek the Halls Christmas special that caused an almost full blown panic attack. We only were able to move past that once I promised that we would not Tivo the special this year. (I have a feeling Christmas could be interesting this year...)

So on Sunday when Brian came home instead of talking about how his trip was or how the girls were he had to be brought up to speed on what "loops" we were caught in of late. Sure enough the second she woke up from her nap (after not seeing her father for four days) she told him about the Shrek issue.

It's hard to watch. It's hard to not be able to explain away the things that cause her stress and panic. It pains me to watch it as a parent. I know in time that therapies and medications will help but for now we have to sit back and watch her deal with all of these issues and so little we can do about it.

Panic Attacks?

Over the weekend we got invited to our next door neighbors house for a campfire. We have been invited to their house before and our kids get along great. They are aware of Abby's allergies so they do their best to make sure to have Abby-friendly snacks (even when we bring our own... so nice of them!). I was outside hanging out and Abby followed our neighbor into the house along with her kids for a snack. Abby grabbed a Nilla Wafer and stuffed it in her mouth without thinking. When Grace told her that it wasn't vegan Abby went into panic mode. She spit it out, came running out to me and just about lost her little mind.

She began crying and gagging and choking for air. It looked like she was having a full fledged panic attack. We got her past the pure panic but still had to take her home she was so upset. She went to bed still crying. I figured the combination of being tired and having a food "accident" just triggered an extreme response.

But then this week she had another similar incident. She was over tired and we were in a restaurant. Out of nowhere she looks at me with a look of sheer panic and says "I need to go home". Thankfully she got calmed down quick enough to avoid the peak of the attack but it was still scary for her (and for me).

Being that we were just at the developmental pedi last week I am not quite sure what to do. I don't want to do meds yet. No amount of deep breathing helps when you get a three year old into a panic attack. I am (naively) hoping it doesn't happen again. (Please don't let it happen again...)

Appointment

We went on Friday for our meeting with the developmental pediatrician. By the time I got to the office my nerves were shot. Rain. Crowded city. Hospital location that I HATE (horribly located in the most crowded part of the city). Drove around and around to find the parking for handicapped only to never find it, give up and park in the lot where I scraped the crap out of my car last year.

Thankfully our wait was brief and the doctor was wonderful. She was a teeny, tiny soft spoken asian woman with a very gentle way about her. Abby was immediately at ease. I hadn't brought much since I thought it was to be an hour long appointment. It turned out to be a three hour long assessment so I was vastly unprepared. Abby's behavior was AWFUL but since we were there for her behavior it was okay.

The doctor didn't want to formalize an official diagnosis (a little frustrating) because she was remiss to attribute her behavior, obsessions, hyperactivity and anxiety to something other than RS... at least for now. She said that in the coming years we will probably have to add a behavioral diagnosis.

The obsessions

Abby obsesses over certain objects. She can't function unless certain things are a certain way. She has only had a handful of them in her lifetime but they are severe and persistent. We don't know whether this is a function of family history, the RS or just her personality. The doctor gave us some strategies to work on her obsessions but she confirmed what I knew; obsessions are obsessions and while you can help minimize them you can't eliminate them. It is something we will be battling over time.

The anxiety

Another symptom she exhibits is high levels of anxiety in certain situations. We try to control the anxiety by using Social Stories and giving her a ton of information about her environment. It works some of the time. The doctor felt that, like the obsessions, this is something we can work to minimize but not eliminate.

The hyperactivity and impulsivity

This was of great concern for the doctor. It has begun impeding her learning and will likely get worse. She said that she is displaying early signs of ADHD. She spoke briefly about the future and she felt that medication might be a likelihood in the future. I think she threw it out there to let us start getting our minds around it. In our case we already knew it might be coming. Her behavior gets more and more impulsive and erratic the older she gets.

All of this being said the doctor felt that it was all minor to moderate. She felt that with the strategies in place and perhaps some mild medications in the future it is not going to impede her ability to learn and function academically. It will make things a little harder for her but she's used to overcoming adversity.

For now we are employing the new strategies and going back when we feel it is time to change the plan. I like that the doc was comfortable letting us navigate that part on our own. So, again, we find ourselves in the "wait and see" game. Luckily we've gotten fairly good at that game. :D

Nerves

Over the past four years we have had many first visits with new doctors. Every single time we have a first visit it takes my blood pressure up a notch. Part of it is that we are going for SOMETHING. And each "something" could be a big something or a little something. The anticipation of it being bad always scares me. The other part is that every time we meet with a new doctor it means going over the past 4 and a half years in detail. All the ups and downs. All the tough stuff. All the tests and doctors and surgeries and procedures. I hate reliving all of that. I like to leave it in the past where it belongs.

Thursday is our meeting with the developmental pediatrician. We are going to discuss the abnormal behaviors, anxiety and obsessions Abby has developed. I have no idea whether this will be a check in every six months kind of appointment or a go in every other week for therapy kind of appointment. Only time will tell with that part.

What is stressing me about this appointment is that this is the most abstract kind of appointment we have had. It's easy to talk about her milestones and the quality of her motor coordination. Going over previous tests and appointments are just matters of fact. This is much different. Now we are talking about behaviors and parenting and underlying psychological issues. This (to me) is where it really gets complicated.

We don't know what the future brings for Abby. She may end up have OCD tendencies like many people with RS. She may not. We may be able to control the symptoms behaviorally and we might need medication. We just don't know. I hate the unknown. You would think the past four years would have taught me to let it go but it's hard. I am better with the whole "wait and see" philosophy than I used to be. I am surely not perfect.

I just hope that we love our new doctor and it is easy to work with her.

Behavioralist Update

The saga continues... as always.

After four week of waiting I FINALLY heard back from CHOP's behavioral division. They called to tell me she was too young for their program. Seriously? They couldn't call a month ago and tell me that???

Anyway, the woman I spoke with recommended I make an appointment with a developmental pediatrician (which I wanted to do two years ago but got talked out of it... damn!). Problem is that the waiting list is 9 months to get in. She suggested that I have one or more of her specialists lobby for an internal referral which would expedite the process. SInce we have the neurogenetics clinic in two weeks I am going to wait and have them lobby on our behalf.

So again, we wait.

Explanations

This is not a new theme to my blog... I know I am being repetitive. I think I have blogged about this more on my other blog than here so I am allowing myself one more opportunity to vent about it.

Being a parent of a special needs child of any sort means that your life is full of explanations. You are constantly explaining things to doctors, teachers, family, therapists and on and on. It drives me mad having the same discussion OVER AND OVER AND OVER but I know it is a necessity. I can live with it.

The explanations that are the proverbial "straw that breaks the camels backs" are the everyday ones. The ones where you are in public and someone asks why your child is flapping or a stranger in line wants to make sure you are aware that your child is spitting intentionally or the millionth time explaining to a family member why she rolls her head when she gets excited. Sometimes I explain and other times I avoid But every single time I want to just respond with "none of your damn business". I know it's cold but it's also old. I have been doing this for years. Why are her eyes crooked? Why is she so small? Why is she SO much smaller than her twin? Why does she flap? Why doesn't she look you in the eye? Why does she spit and flap and hit when she sees a baby in a carseat? Why? WHy? WHY?

I WISH I KNEW! Trust me I wish I had an answer. I ask myself the same questions EVERY SINGLE DAY. I have NO answers. I probably never will.

I wish I had this attitude that it is my job to educate people about her condition. But because they will NEVER EVER meet another person with RS why the heck bother?

The Behavioralist

This week I had a chance to have a phone meeting with Abby's OT at school. We needed to talk about her new fixations and tantrums in terms of what degree they are sensory based. She armed me with some new strategies to try until we get in to see someone.

She also told me that the township has a behavioralist on staff and she has put in a call to get her on Abby's case. She is apparently trained as an SLP, autism therapist AND behavioral therapist. So she sounds like a great person for Abby. So now we have to wait. She is one person for the whole township so it might take a couple of weeks. The OT is going to try to pull some strings and get us in contact sooner rather than later. Fingers crossed!

We also got word back from CHOP's Behavioral Unit. It looks like it would take at least 8 weeks to get seen. I am also not sure that it would be the best fit. It is very much for children with very serious and dangerous mental illnesses. While I don't want to minimize her need to get help I don't think that is the avenue I want to go down.

We'll see.

Behaviorist

Because of some of the new symptoms Abby has been experiencing we have decided that it is time to seek out a behavioral therapist. What kind of eats at me is that I am a trained therapist and my specialization is anxiety disorders. I feel like I should know what to do wit her... but don't.

I think there are a couple of reasons. One is the clear one that she is my daughter. Treating your own family members is strictly forbidden by our ethical code so that is an easy one. The second reason is that she is a child. I didn't work with children very often. Another reason is that there is so little background information. Usually when I met with a new client I spent a great deal of time getting a good, thorough history. Usually out of a persons history would arise a diagnosis. With Abby we know that her "issues" come from her global diagnosis of RS but we don't know the mechanisms causing it.

I know that when I sit down with the specialist (once we find him/her) I am going to have to put into words what I have not been able to yet. So here is the beginning of the list that we need to start tackling:

- Extreme anxiety about changes in schedule
- Anxiety over certain scenes in movies and tv that cause her to count obsessively
- The need to have certain toys (mostly dolls) settled in a very, very, very specific way or else she goes into hysteria
- Anxiety about seeing any baby that we see in a store. If the baby is covered or facing the other direction she melts down.
- Inability to meet new people. When she does she will spit or hit or do other inappropriate things. SO frustrating.
- The new constant need for oral input and stimulation... we had been making progress on this but lost all progress.
- Spontaneous actions like stepping off stairs, curbs, chairs, etc. when she knows she could get hurt. This one came out of nowhere
- Inability to tolerate smells and sounds. This is another one we had been making progress on...
- The inability to sleep through the night STILL!
- Resurgence of nightmares

The list is unfortunately longer but this is where I would like to start.