Prematurity... Should It Be a Classification for Special Needs Services?

It is hard to fathom that in a couple of days Eliza will be ten. I look back on the past decade and and am amazed, and often baffled, how she and I have come this far given the grim outlook at her birth and in her early years.  Eliza is an empathetic, funny, bright, loving child, and a pretty good artist too boot.  She is a creative author and can do more math in her head than I can.  

But there are the lingering effects of prematurity and there is no shame in acknowledging this or speaking about it.  Recently there was an article posted on many of the endless preemie parent Facebook pages about a study from the UK concluding that premature children should receive a special needs classification.  As one parent, among many, of a micro preemie, we have argued that micro-prematurity should be a classification for the purposes of receiving special ed services, not only for Early Intervention but throughout elementary school.  I was almost amused by the comments to the Facebook posts, such as "my nine month old 30 weeker is doing great, how dare someone suggest he might be special needs!!!" I shook my head thinking, a nine month old isn't expected to do much, but give me a call in first grade when your kid still can't hold a pencil.  Or maybe you are one of the lucky ones who will have the child that escapes all of the micro-preemie fall out:  chronic lung disease, poor fine and gross motor function, executive function issues, processing issues, ADHD, and anxiety, just to name a few.  

In order to get special ed services your child needs to fit into one of several classifications.  Unfortunately severe prematurity, micro prematurity, extreme prematurity are not classifications.  Many of our children do not fit neatly into one of the designated classifications, so we end up spending small fortunes on neuro-pyschiatric evaluations, which are generally never covered by insurance, and have to cobble together a report that will help get our children the services and accommodations they need to thrive in school.  

Based upon my ten years of dealing with the powers to be in control of Early Intervention, Preschool Special Education and Elementary School Special Education, I would be very happy to be able to check one box called "premature" and not have to deal with the endless crap to get my daughter the services she needs.  Most educators, principals and special education bureaucrats have no idea of what prematurity really means and the long lasting effects of prematurity, nor do I expect them to know this, since it is not something that has been addressed in an educational setting. 

Given all of that, I'm not in the least offended by the idea of classifying prematurity such that your child can receive the services if they need special education services.  

And if you are one of the lucky parents, then stop getting your knickers in a jam over this.

The Little Monster Called Anxiety

Anxiety is like a tiny monster inside of Eliza's body that from time to time grows into an uncontrollable, very large monster.  

There is an ebb and flow to its appearance and it is terribly unpredictable. When it does take control sometimes certain techniques like breathing, chanting and other rituals can put it back in its dark place where it will lurk, but not be in charge of Eliza's every thought and action.

But there are times that it can't be controlled.  And we are both held hostage to something we cannot see or hear.  It is those times that I weep for my daughter and the uncontrollable fear which has gripped her.  There are nights I can walk the dog right in front of our apartment and she just wishes me luck and reminds me to use my Judo moves if anyone bothers me.  She can watch the dog and I from the window.  I can reach to the glass to tap on it so she knows we are okay, all of five feet away.  And then there are the nights that she begs me not to bring the dog out.  Or the nights when she loses sight of us for a moment and begins to wail and bang on the window, in hysterics.  After one of those nights she will literally follow me through the apartment holding fast to the back of my shirt, so she is "safe."  And then we sit and together begin one of her chants or rituals to help calm her.  Sometimes it takes 15 minutes, other times it takes 2 hours or more to calm her.  

We are also hostage to this monster in that there are so many places we cannot go, places I know Eliza would enjoy, but for the anxiety that may, or may not, rise up and take hold of her.  Just the other night we had to leave a restaurant because there were televisions showing sporting events.  Eliza loves sports and enjoys watching the Knicks.  But since there is just that chance, no matter how slim, that something frightening to her will appear in a commercial or a trailer, that causes the panic.  This was a restaurant that just over a year ago Eliza loved to go to and was one of the few places where there was something she would enjoy eating.  For now, we have crossed this restaurant off of our list, to be tried again some time down the road.  Or not.

Anxiety has caused Eliza's world to grow smaller as the list of places she used to go diminishes.  I could rant on about the causes of her anxiety and panic disorder, but I've done that before, it doesn't change anything and at this point the causes don't really matter at this point.  

So while Eliza's world may be smaller, we try our best to make that smaller world as rich as possible.

Being Anxious and Having Anxiety are Two Very Different Things

When I speak to people about Eliza’s anxiety, I am often met with comments like “oh I know what you mean, little Ollie was so afraid to put his face in the water during swim lessons” … or something like that.  Here’s the thing, there is a huge difference between a child actually diagnosed as having severe anxiety and an anxious child.  It is perfectly normal for a human being, young or old, to be anxious about sticking their head under water (let’s face it, we don’t have gills), meeting new people (could be a psychopath in the crowd, who knows?), taking a test (I personally was nauseous before every exam right through the Bar Exam) or learning to ride a bike (that concrete or black top careening at your face as you start to fall should make you anxious about the end result).

I know most people think they mean well when they say these things (at least some of them do).  Others just want to latch onto a new diagnosis for their own kid.  This latter group of people need to be evaluated for Munchhausen's Syndrome by Proxy, since I can assure you having a child with actual severe anxiety with associated panic disorder, as in can’t leave the house only under certain conditions, is often found quivering and sobbing in a corner because of a sudden panic attack, and who can’t enjoy many of the simple things that other kids her age enjoy, is no picnic for that child.

There are various classifications of medications that can help reduce anxiety in children, none of which seem to work for Eliza and which in fact exacerbate things.  Talk therapy and play therapy have helped, along with Cognitive Behavioral Therapy.  CBT recognizes that things like anxiety and panic disorder can’t be controlled through rational thought.  So there is no use in persistently telling Eliza there is nothing to worry about or that it is just her imagination. It is thought that the anxiety and panic disorder arise from various external and internal stimuli (such as having to deal with a nasty little classmate who figured out her phobia of blood and repeatedly told her he was making her bleed).  So the child psychologist that Eliza sees, and whom she adores, focuses on the problem and tries to work with Eliza to develop strategies to address the problem. She also addresses Eliza’s specific fears and her avoidance behavior (like running away from a sign that has one of the lovely bloody posters for the latest gory movie, or running from the school yard into a safe place in school if some other kid falls and is bleeding).  Although blood is a particular phobia for Eliza, there are many others that can send her into a full blown panic attack.  Other times the panic attack occurs for seemingly no reason.

Anxiety and panic not only cause havoc with Eliza’s daily living, but also seriously disturb her sleep.  She prevents herself from sleeping because of unidentifiable or irrational fears.  The usual tricks to get a child to sleep no longer work.  Melatonin is useless at this point and for various reasons other over the counter solutions parents try, like Benadryl, are things Eliza can’t use.  I use supplements in an attempt to try to calm her and help her regulate her internal conflicts.  So far Magnesium in a pretty high dose, a B complex and Fish Oil offer some relief for her.  Breathing exercises, yoga and essential oils also seem to help.  The critical thing is to try to stop the anxiety from turning into a full blown panic attack before things get out of hand.  Sometimes I can do it, other times I can’t.  And when I can’t, we just sit together, often for hours through the night, under her tent with fairy lights and I let her talk, get angry, cry and talk some more.

I hadn’t intended to post about the severity of Eliza’s anxiety and panic disorder, but I suspect there are other parents out there with children in the same boat.  It seems it is all well and good to post about physical health issues in children, but almost taboo to post about mental health issues in children.

So the next time someone tells you that there child can't participate in something because it is too anxiety provoking, please just take them at their word.  Eliza and I are lucky to have friends who understand this and have gone out of their way to accommodate Eliza's fears so that she can still participate in fun activities with her friends.  Oh, and if you have a  child who thinks it is all fun and games to taunt a child with anxiety or, worse yet, actively try to provoke an anxiety attack by playing on the other child's fears, get your kid some help.

The Dragons Eliza Wants to Be.

I recently posted about Eliza's ongoing, and worsening, eating issues and how basically after almost 9 years of dealing with this I not only feel like the last man standing at the OK Corral, but that it is really a losing battle to ever get good nutrition into Eliza. You know, by eating, the old fashioned way, like 99.99% of the world does, enjoying a meal, maybe trying something new, or even just sticking to a handful of standby foods, which still afford your body what it needs.

Eliza has lately begun to talk a lot about her two new favorite dragons. "Unknown" and the "Night Light Dragon." 

Tonight at dinner at her favorite restaurant (yes she has one, it makes awesome Shirley Temples and they refill my wine without having to be asked) she drew the dragons below in her sketch book.

Keeping in mind that pen and ink is not Eliza's best medium, the first dragon below has a long tail, big eyes and a night light (a star, just like Eliza's night light) at the top of what looks to be a long tube.  

And it has the words: "Food Goes Here!"

This drawing depicts the dragon named "Unknown."

 

Unknown has the ability to generate his own food by the combination of water and love (depicted by a bottle of water and a heart).  Like the Night Light Dragon, Unknown does not have to eat.  

Both the Night Light Dragon and Unknown can eat, if they want to, if it is something they enjoy.  But they don't have to eat for nutrition or any of the myriad of things that they cannot tolerate.

I don't know if I am more fascinated by Eliza's creations or scared by them.  For her whole life I have managed to avoid having her use a G-Tube.  From giving her a bottle every two hours for years, to spending your average American's retirement fund on every kind of therapy known to man and woman (mostly woman since I have yet to run into a male feeding therapist).

But what if this is what she wants?  She certainly knows what a G-Tube is and looks like. 

When I asked her about the Night Light Dragon and Unknown she said they were very lucky because they were born with their tubes and didn't need an operation to get them.

This whole thing reminds me of two books I read in elementary school, "Karen" and "With Love From Karen" by Marie Killilea. Karen had either cerebral palsy or polio (I can't recall which).  She and her family struggled for what seemed like years to teach her to walk.  She was eventually able to walk with crutches rather than use a wheel chair. My main recollection of the books was when Karen decided that she would rather use a wheel chair since she could see the world with her head held up, rather than always looking down when she used her crutches.  I recall that her family saw this as giving up, but that Karen saw this as freeing herself from the difficulties of walking with crutches, never having her hands free and always looking at the ground, not the sky.

The story of Karen really resonates with me, because it seems to me that Eliza is reaching an age where she is starting to want to decide how she wants to live and what she can tolerate and what she can't tolerate.

We are a society obsessed by food, good and bad, healthy and pure crap. Having a G-Tube and taking no joy in food, save for Haagen Daz ice cream, popcorn and a few other treats is not considered "normal" in our culture and never will be (and certainly is not a diet that can sustain a person). 

Maybe normal though is overrated?

So Your Child Has Truly Lost Her Appetite, What To Do?

When I started this journey as a parent of an extremely premature child I will admit I was in a bit of a fog in those early days.  Trying to figure out what the alphabet soup of acronyms Neonatologists threw out in conversation as if I had studied neonatology left me drained. Thankfully the nurses and Google deciphered them for me.  The daily ritual of walking to the hospital worrying about what I might find became numbing.  From my apartment bedroom I could see the NICU lights and would wonder if Eliza was okay and then pull on an old green fleece and walk across the street in the middle of the night to make sure she was okay, or okay as she could be under the circumstances.

The years passed and some struggles continue to this day, some struggles were overcome and new ones arose.  There were the expected pulmonary issues, gastrointestinal issues, growth issues, nutrition issues, delays in speech, gross and fine motor function and some unexpected cardiac issues and neurological issues.  But one thing was constant, the ever present, never ending, feeding issues.

I was lucky to meet a group of women shortly after Eliza came home who were all traveling on the SS Extreme Prematurity and who all had children around the same age as Eliza, who simply could not, would not eat.  All the babies lacked the skills that virtually all full term healthy children come by naturally (or which other micro preemies developed over time) and all had underlying medical issues that made eating a painful and difficult process. Combined, I think we tried every feeding therapy known to humankind.  Some small steps were gained, often followed by giant backward steps.  Some children learned to eat to a degree where at best they are "picky" eaters, others still rely on G-tubes and still others, like Eliza, have simply not mastered the art of eating, take little to no joy in eating, eat a very limited number of foods and seemingly have no sense of hunger.  It was a relief to know that I just didn't suck as a parent in the most basic, natural thing we can do for our children which is to feed them.

When Eliza left the NICU she was discharged with a list of specialists.  As long as that list was, I was prepared for her to see these specialists since they were for issues that she was already being treated for in the NICU.  But along the way in Eliza's early months home she showed no sign of hunger, had to be woken up or fed in her sleep.  She never cried for a bottle.  Eliza was referred to Early Intervention for feeding therapy.  After 3 years of feeding therapy with both occupational therapists and speech language pathologists,  Eliza had only mastered eating yogurt and continued to rely on liquid nutrition.  Sure there were the occasional days when she would take a bite of something and I was thrilled. I was thrilled the day she drank soy sauce, but it was a feat never repeated again. I remember posting a photo of Eliza taking a bite of pizza.  After I posted the photo everyone who saw it assumed that everything had been cured and Eliza was now eating like a pro.  In hindsight I suppose it was foolish of me to ever ever post a photo of Eliza and food, but like any parent I was proud of that moment, even if was not at all representative of what Eliza can and did eat at the time. Feeding therapy continued for another four years. 

The general attitude among most of the medical world does seem to be one that sort of minimizes feeding problems since, let's face it, they can be instantly "cured" with a G-Tube. This attitude of course does not factor in the huge portion of our social interaction that revolves around meals and food and that if you have no interest in food or can't tolerate being near food, or certain smells, your social interactions will be limited.

2014 started out as a promising year for Eliza for eating.  She would eat a certain type of chicken, pepperoni slices, a certain type of pizza and one or two silver dollar pancakes, nutella and some peanut butter.  None was in a quantity to provide adequate nutrition so her diet still consisted of at least 50% of protein drinks.  By some small miracle, Eliza had actually made it to 49 pounds at 8 years and 8 months and had finally grown to 48 inches tall. When she was weighed and measured at her beloved gastroenterologist in the beginning of November, Dr. L., my mother and I almost threw a party.  I had long ago made peace with the fact that Eliza would likely never be a person to delight in food, that she would probably always need protein shake supplements and that her repertoire of foods would likely be limited, but at least she was growing and enjoying some foods.

2014 was not however a good year for Eliza in other ways. She suffered greatly with anxiety for a good part of 2014 (the source of which I've previously posted), but by November and after lots and lots of therapy she was doing pretty well, had a coping "menu" of things to do when she felt anxious and overall was a pretty happy kid so long as she was within her scope of safety. 

Since Eliza was at a pretty good place at that point weight wise and her anxiety seemed to be in check, the good doctors and I thought there was some wiggle room to address her ADHD with medication.  Everyone knew that there is often a decrease in appetite from ADHD medications, but since the medications are out of your system in 12 or so hours we agreed it was worth trying.  If Eliza's appetite dropped off, I could stop the medication and presumably her appetite would return to what it was. And in theory that is what should have happened.

But there is always someone out there to disprove the general consensus.  And that someone is little Eliza.

The medication (which I will not name since it has helped many other children with ADHD) was, by week four, an unmitigated disaster.  There were some side effects that were extremely troubling (and lead to another medication) but one critical side effect was that Eliza stopped eating.  Not just a decrease in appetite but pretty much stopped eating.  And then she started to limit her liquid intake as well to about 16 ounces a day, 20 on a good day.  She also stopped anything resembling a normal sleep pattern, sleeping an average of 6 hours or so a night and not falling asleep until 2 or 3 in the morning some nights.

But although the medication was stopped, Eliza did not regain her prior appetite, mediocre as it was, despite me being assured that the effects would wear off almost immediately.  Now, weeks later, Eliza again rarely expresses hunger, does not eat the foods she had started to eat (pepperoni, chicken, pancakes) and has to rely almost exclusively on protein shakes for nutrition.

Ironically medication number 2 (which I will also refrain from naming since it has also helped many children) usually increases children's appetites to the point where parents become concerned about their children are becoming overweight. Eliza did not enjoy that side effect.  That medication was stopped for other reasons.  And still Eliza's appetite did not reappear.

It seems as if Eliza and I are back almost 8 years or so ago when Eliza was an infant/toddler with no appetite subsisting on a primarily liquid diet.  There are rare days where there will be something approaching a "normal" meal for her (a small slice of thin crust pizza with pepperoni) and then multiple days of nothing except a few GoGurts.  It is as if her internal clock for hunger has lost its normal cycle.  

Which makes me wonder, when you use a medication that has a potential side effect of decreasing appetite and the person's appetite is already on the extreme south end of normal, does it basically eliminate a sense of appetite? And if so, how do you trigger even that small appetite to come back from the abyss?  The usual appetite stimulant that gets trotted out, Periactin hasn't worked.  There are a few other stronger/different medications out there known to increase appetite, but none which, to me, seem quite right for an almost 9 year old because of the potential side effects or the nature of the medication.

Eliza is a a very creative child and she loves dragons.  She has created a dragon who does not have to eat, he can create his own hydration and nutrition in his own stomach without having to eat.  Kind of telling one how Eliza views food.

I can't blame this all on the ADHD medication.  But you would think 7 years of feeding therapy would have had some lasting effect.  But no, despite the best efforts of some wonderful therapists.

And while I also leave comments open, please do not post any comment that begins with "have you tried ___? My son/daughter loves _____!"  

The Annual Santa Review

For those of you following our tradition of searching for the "perfect" photo of Eliza and Santa, let me re-cap the past 9 years  before I unveil the 2014 photo.

The evolution of Eliza's relationship with Santa begins in 2006 (and for those of you concerned about the germ factor for the early years, I will tell you the secret and it isn't photoshop).

2006:   Fits in the palm of Santa's hand:

2007:   Deer in the headlights:




2008:  Abject terror and she leaps from Santa's lap (scaring the bejesus out of Santa):




2009:  Starting to think this isn't so bad, but certainly not talking to Santa:

2010:  Quite thrilled with the old guy and even chatted it up with Santa:




An added bonus for 2010, the Richter Cousins in their Ugly Sweaters:j

2011:  The dynamic changed.  Eliza realized that Santa was the key to getting a Wii, and World Peace, so she ingratiated herself to him by giving him a thumbs up to everything he had to say:

The Richter cousins also took a moment with Santa, sans Ugly Sweaters, but with oddly mismatched outfits:

2012:   Now at first you may be dismayed at this somewhat angelic photo of Eliza with Santa (but do not despair dear readers...).  

Sweet, eh?

Santa invited the Richter cousins to sit and talk about World Peace and finished up asking Eliza to do a portrait of the two of them for him to bring back to the North Pole:

We took our leave of Santa and headed to the elves who will gladly give you photos from Santaland for a small donation.  

And before our eyes what wonders did appear!  

We didn't have Ugly Sweaters this year, or a wee child leaping from Santa's grip this year.  

Instead we discovered the "Give Me the Toys Old Man" photo:

Yes!  And here I thought we would break our tradition of spontaneously bad Santa photos! Perhaps Santa was aware of Eliza's unlady-like sneer before he met up with us and was simply cowed into giving into Eliza's demands?  Perhaps he wasn't as sweet as we thought, but just scared to say no to Eliza?

2013:   After 8 years of visiting Santa Eliza realized it is all about the list (which always includes first and foremost World Peace) so she insists that Santa give it a good read before the official pose.

Eliza is going for a mature look, no antlers this year.

2014:   Nine years of visiting Santa!  It's very hard to believe Eliza is only a year away from marking her first decade with Santa.   And it is also a bit shocking to realize as she sits on his lap that her list if 5 feet long!

May Christmas bring us all Peace, Love, Joy and Laughter.

Much love,

Anne and Eliza Grace.

Special Needs Children and Athletics

If you search "children and athletics" on any book site you get dozens upon dozens of books on how to help coach and motivate children in athletics, whether competitive sports or just for fun. Add the words "special needs" in front of that same search and you pretty much get nothing (well there is a book about Oscar Pistorius, but I'm not sure he is the role model parents are looking for these days).

The same thing happens on a general Google search. You add in "special needs" and the search brings you various websites and blogs on how to make sure the school district is following the IDEA and implementing your child's IEP so that your child is not being denied to right to engage in PE class, even if modifications are necessary. You also find links to organizations that provide sports programs (for a fee that often far surpasses the fee for the same program for neuro-typical children) for special needs children, often with very specific special needs, such as Autism. And that's about it.

There is nothing that I have located (and I am a pretty darn good googler) that addresses how to encourage, support and motivate your child with special needs in athletics. I've yet to locate a book (or even article) directed at coaches on how to motivate, encourage and support children with special needs who are participating in a typical sports program.

Am I surprised? No. Am I disappointed? Yes. With the hundreds, if not thousands of articles and books written about the important life lessons children learn from participating in sports and how to motivate and coach children, you would think someone would have addressed the inclusion of special needs children.

Eliza has had two wonderful Physical Education teachers. But these are teachers in the public school system and they have years of experience teaching and coaching children with special needs because the school Physical Education classes are inclusion classes. They understand that Eliza may need to have the rules of the game broken down into individual steps and perhaps repeated a few times. They understand that simply telling her to try harder on her bounce pass in basketball isn't particularly helpful without something more definitive, like reminding her how to hold her hands properly to put the ball in play.  

But when we have ventured into those weekend sports activities, things have been pretty disappointing. Eliza takes gymnastics on weekends. It is a group class but the coach to athlete ratio is pretty good (20 athletes in Eliza's age group (8 to 10 years old) and 4 coaches) broken down into groups by level. Eliza enjoyed it last year in the younger age group (6 to 8 years old). In the younger age group instructions were broken down into smaller steps and I suppose there was an expectation that the younger gymnasts needed more structured coaching. Just my guess.

This year in the older age group Eliza has struggled. Eliza was enthusiastic when she returned after the summer hiatus. She is not as adept as some of the other gymnasts (some of whom have been taking classes since they were toddlers) but she is equal to many others and was eager to learn and try.  She has some fears (flipping over the uneven parallel bars), she is not as physically strong as some of the other girls and is by far the smallest of the girls in her class. Despite that, Eliza does quite well on the beam and mat.  

But Eliza struggles in the warm up session since instructions are given in bulk ("Now girls let's warm up by doing A,B,C and D and repeat that 4 times).  Eliza will remember A and B but then kind of get lost because she did not retain the entire instruction.  Or she'll remember the 4 step instruction but not the instruction to repeat that sequence 4 times). So to the average observer it looks as if she is just not paying attention. The coaches are relatively young and I've talked to them about Eliza needing instructions broken down or repeated, but, like many folks, they just think Eliza doesn't pay attention, is daydreaming or too lazy to try harder. And this makes me sad an frustrated. I'm not looking for Eliza to be catered to, just some small extra steps to help her succeed at something she enjoys in a setting with neuro-typical children.

Athletic endeavors have been a struggle for Eliza, not for lack of skill,but because since she does need more reminders or instructions broken down, and without that she cannot live up to her potential. (Welcome to the world of ADHD and working memory deficits). She sees her teammates master something with minimal instruction and she is standing there waiting to hear what the next step is.  As I've mentioned in my prior post about the lasting effects of bullying (real bullying, not just the routine kids being boneheads) Eliza has some self-esteem issues.  The effect of this combination has lead Eliza to believe that she is not good at it gymnastics, never be good at gymnastics. and therefore does not want to go to class. Clearly she loves her gymnastics since she enjoys practicing at home on our mat and showing off her skills.

The "solutions" are limited. Enroll Eliza in special needs gymnastics class (assuming I could find one), win the lottery and pay for private lessons to supplement the group class in the hope that this builds her confidence, switch from gymnastics to something else like tennis, which she did well at in an after school program (in large part due to having a great coach) or have her not participate in sports. My goal is not for Eliza to join an Olympic Team or an NCAA Division I team. I just want her to experience the camaraderie of being on a team doing something she enjoys, learn the values of team play and sportsmanship and simply have some fun.  

So my question is, when people decide to become coaches and instructors these days, do they learn about or discuss the fact that there may be a child with special needs in their program? Or is the goal in coaching to shunt children like Eliza off to a special needs program?  I know what the politically correct answer will be, but what really goes through the mind of a coach? Are coaches willing to take the time to break down instructions (something that would arguably benefit the neuro-typical children as well)? I'm not trying to be contentious, I am just really curious how this is addressed in coaching, since the Google was not able to answer my questions.