Fighting the Powers that Be

As I mentioned in the last post, I am becoming increasingly distressed by Leah's absences from school.  I have spoken with the school numerous times - the last two times, directly requesting help from the Educational Assistants, to have her assessed for an IEP, to have space made available for her to nap so she can stay in school more often, that work be sent home so I can assist in keeping her current etc.

Unfortunately, the response has not been good and I have been forced to move on to the next step.  Today I drafted a letter to send to the principal reiterating all my requests, my reasons for them and quoting supporting information from the school board's website.  I have cc'ed Leah's teacher, the Educational Resource Teacher and the Coordinator of Special Education at the School Board.  If nothing comes of this, then I will lodge a formal complaint with the school board.

I am greatly disheartened that it has come to this.  I can't believe that the school would not be more proactive in seeking/providing assistance for her.

I have included the body of the letter below.

Further to our conversations on February 15^th and 22^nd, I would like to re-iterate my request for a Team Meeting to discuss the educational and support needs for Leah.  I understand that the lack of an official diagnosis may make this a more difficult process, but the facts speak for themselves, she is missing an astonishing amount of school, and while at school it is noticeable that some days she is lacking the ability to work to her usual level.

As mentioned in her report card, Leah is constantly struggling to catch up on school work missed due to her frequent absences.  I understand that Mrs. ****** is working with her as time allows to bring her up to speed, but I cannot imagine that she has sufficient time to meet all of Leah’s needs. 

As of the date of the printing of Leah’s report card, she had missed 29.5 days of school.   As we discussed, this figure does not include the many, many days that she has come home after an episode.  She is normally a good student who is eager to learn, but with this amount of missed instruction, it is a terrible strain on both teacher and student to attempt to remain up to date.  As stated on the website;

Belief 6:

The classroom teacher needs the support of the larger community to create a learning environment that supports students with special education needs.

From our conversations, I understand that any work sent home cannot be assessed for marks, but currently I am not receiving any type of work/practice for her to do.  I am willing to help her at home, but am not being given the opportunity to do so.  I have asked that any practice or work that needs to be sent home could be given to one of her three siblings at the school.

In doing some reading on the NCDSB website, I am given to understand that Educational Assistants are assigned to the school not a particular student, and I would like to again request that some time be dedicated to Leah to help with her school work and her trips to the bathroom/office/etc.  Based on the Emergency Protocol established at the beginning of the year, the school requested that Leah not be allowed to be alone when outside of the classroom.  Since then she has used other students to ensure her safety, I would prefer that safety issues be attended to by an adult.

I had also requested giving Leah an opportunity to lie down during the day, possibly at lunch.  We have noticed that a brief nap or chance to rest seems to be very beneficial to her and might give her the opportunity to remain at school more often.  I understand that dedicating a staff member to her for this time would be difficult, but again, that is where an EA would be an asset to her.  As for a lack of space, even a quiet corner in the library would be sufficient if a more suitable space was not available, or until one is made available.

While I understand best practices for a teacher would be to modify the teaching program as a student requires it, and I appreciate the offer of an IEP prior to the EQAO testing next year, to ensure she receives some sort of accommodation if required;  I strongly urge that an actual IEP be in place for Leah now. This would allow the IEP to follow her from teacher to teacher for continuity.  Leah’s needs are unique and a new teacher would need to have an understanding of what has worked in the past and what those needs are.  I am requesting the assignment of an IEP at the earliest possible opportunity to ensure she receives the necessary accommodation.   I strongly believe she needs one now.  Again, quoting the Guiding Principles:

·         The guiding principles for services to students are rooted in the belief that the Special Education Department advocates for all students.

·         Students and their successes are the focus of all decision making.

·         The foundation of programming and delivery is early ongoing assessment and intervention.

I am distraught at the idea of Leah falling so far behind that her marks and foundational studies are negatively affected.   This will hinder her chances for success as she progresses through her schooling.  This is something I am not prepared to allow.

As always, I can be contacted by phone or will make myself available for any meetings that would assist us in accessing the help that Leah needs.

Thank you,

Heaven only knows how this will turn out.  Keep us in your prayers.

XOXOX

Appointments! Medications!! Report Cards!!! Oh My!

As I mentioned in the last post, Leah was prescribed Dexadrine as a method of *hopefully* keeping her more awake and alert during school hours.  On day 3 of the meds, the school called to say she was exhibiting some new symptoms and they weren't sure what to make of it.  She complained of her right eye (what is with that RIGHT eye?!?!?!?) being very blurry and the right side of her face feeling funny - which after much questioning really meant numb.

I attempted to get an appointment with our paediatrician, but not only was he not in the office that day, but none of his partners were either!  I tried to call the neurologist but he is on vacation and apparently so was his nurse although her voice mail didn't say that, so I left a message asking for advice.  Against my better judgement I took her to our local hospital.  Now, don't get me wrong, I used to work for this hospital, I know that it has many good attributes, but I also know that the waits are long, the nurses (not all of them) can be rude and lazy, that some of the doctors need refresher manners courses and sometimes they just aren't all that effectual.  But as with anything else, some days are good and some days are bad.

Well that day certainly wasn't my day.  We had an hour's wait just to be triaged.  I explained to the nurse that she has a neurological history, that she is currently being followed by her pediatrician and 3 specialists,that this was a new medicine with new symptoms.  I told her I was concerned about it possibly being a TIA She took Leah's temperature, checked her O2 and heart rate, asked me to guess at her weight, gave her a priority level of 3 on a scale of 1-5 and sent us back to the waiting room. Then we waited another 6 hours to see the doctor only to be told that since she seemed to be doing better that maybe it was "only" a complex migraine, but taking into consideration her neurological background he really couldn't be certain and we should follow up with her doctor!  Oh and maybe stop the meds until we spoke with the specialist. Well, by that time I had had no sleep from working the night before, it was now 7pm.  I was so tired I was nauseous and between the lack of food, stress, frustration and worry, I was cranky and very very close to becoming weepy.

 But I held it together and very politely told him what I thought of his hospital, his triage nurse, his emergency department and our treatment.  I explained to him that the symptoms he was seeing at the 7 hour mark were quite different than they had been when we first arrived. I told him it was unconscionable that a child with a history of neurological issues, presenting with neurological problems should be left for 6 hours and not even been checked on by a nurse!  Not once did someone come and see if she was okay, or if there were any changes!  That it was inexplicable that the triage nurse did not do any other sort of check on Leah.  Didn't check her eyes, blood pressure, balance, or even a set of very basic neuro checks.  He was very understanding, apologetic, attempted to explain away the long wait and the triage nurse's inexperience with children etc.  But in the end, none of it mattered.  Her symptoms persisted until the next day and then disappeared.....as usual.

On Monday we went for her follow up visit to the Sleep Specialist - he didn't feel the medication caused the symptoms and that it might just be a progression of whatever it is Leah has.  He had neglected to look into the functional MRI, and restarted her on the meds.  We go back to see him on the 27th.

Just because this picture makes me smile!  It is from her sleep study from a couple of months ago- she woke up with the cords wrapped around her neck 2x and the wildest hair I have ever seen on her!  Obviously she is a restless sleeper!

Report Card
For many students, getting a report card like Leah's would be great.  She had a B- average, a few Cs, an A or two but mostly in the B range.  For Leah who previously has had an A to A- average, I was not happy.  The teacher commented right in the notes, that Leah is constantly struggling to catch up due to her frequent absences - 29.5 days.  But that only captures the time missed when I have called in to say she won't be in school.  That number is deceptively low - it doesn't show all the days that I get a phone call shortly after lunch saying she needs to come home.  In reality she is at  50+ days missed.  If an average school year has 190 days in it and we are only in February (60% of the year), that means there have been approximately 114 school days so far.  So in reality she has missed about half of her year already!  This year's marks may not look so bad, but what about next year? And the year after that?  What about the skills she needs to learn and master this year for the foundation of all the other years?

At the parent teacher meeting we discussed keeping Leah current.  She states that any work completed at home can not be graded.  She does not use a lot of work sheets in her teaching repertoire - instead she uses a lot of hands-on, experiential learning - which is awesome....if you are in class.  When Leah is at school, the teacher makes an effort to spend time with her trying to get her caught up, or explaining a new concept.  But she says Leah's ability, focus and endurance differ greatly depending on the day and how she feels, making it difficult.  And of course, she has the rest of the class to teach.

I spoke with the Resource Teacher and the Principal and asked if it was possible for Leah to lay down somewhere to take a quick nap - maybe that would help her stay in school more days.  Logically, their outright refusal, cover their a$$'isms, counter arguments make sense.  No place for her to lay down, no available staff to watch her, can't assume responsibility for determining severity of her symptoms... yadda yadda yadda.  They were quick to suggest I pick her up, take her home for a quick nap and then drive her back to school.  In a perfect world that would be great, but my world doesn't work that way as of course I am supposed to be sleeping all day!

Unfortunately for them, I don't feel like being logical anymore. I am tired of being understanding, logical, patient etc.  I want answers for her, I want help for her, I want some type of educational intervention.  Out of everything this I feel I can make happen.

A family friend is an Educational Assistant and I picked her brain a bit. Because her marks have not fallen "enough", she wouldn't be tagged for an IEP - which is ridiculous!  Why wait until she is SO far behind before helping her, wouldn't their time and effort be better served keeping her current?   Even though Leah does not have a "label" yet, the combination of her health, attendance and the school's insistence that she never be alone (must always have another student with her), our friend believes she fits into the parameters to have some EA time dedicated to her.  Unfortunately she doesn't work for our school board, but her sister does!  She is putting us in contact with each other so I can be fully prepared when I approach the school and/or board demanding requesting  these interventions.  Yippee!  Insider information!

We also spoke with the Neurology clinic and requested they move up her follow up appointment.  Now that Narcolepsy has been ruled out, I see no reason to wait the 3-4 months for the genetic testing to come back.  It is time we moved on to investigating whatever is next on their list.  I have to wait until Dr. Callen comes back from vacation before I get an answer.

Yet again, it is another LONG winded update without any real news, just more issues and questions...so disheartening.

As always, if you made it this far THANKS!  Please continue to pray, pass this on/discuss with your friends and families.  Someone out there knows the answers Leah needs, we just have to get the information to them!

And she is home again.....

I have to say, I do love it when a carefully thought out plan works out perfectly - although in this case, I really do wish it wasn't necessary.

Yesterday, I met with Leah's teacher, principal and the Educational Resource teacher to create an Emergency Medical Protocol for her.  Hers, just like our Leah, is unique.  Usually when a protocol is created, it is because there is a solid diagnosis with definite signs, symptoms and actions to take.  In Leah's case it is full of "if this happens do this....", BUT "if this happens than do this....", OR "if this happens than do this..."

We had a very good, in depth meeting, the staff took lots of notes and were very interested in the history and progression of what she had been going through and most importantly of all, understood the necessity of having all staff members familiar with her and her condition.

To ease the process, I had typed up a list of her symptoms, what her reaction(s) is and a bit of her medical history.  I explained our concerns for her education and her socialization as well as her needs during and after an episode.

We discussed the need for ongoing communication and what would happen during school trips, assemblies and the need for her to have a bathroom buddy.

As it turns out, the first test of our protocol happened this morning, less than 24 hours after we finalized it.  And to boot - she had a supply teacher.  Her teacher had left a copy of my letter as well as instructions to confer with the teacher across the hall should she have any questions.  Today, Leah was home by 11am.  The plan worked like clockwork, all points were considered, assessed and followed through on.

Now that I know the protocol is in place and working, her fairy-god teacher across the hall is watching out for her, and all staff/volunteers and supply teachers will be informed, I think I can rest a little easier during the day.

This is a copy of what I had prepared prior to the meeting.

Leah Balint

Age 7 (June 10, 2004)

49lbs

No known allergies

Suspected Seizure Disorder

Doctor’s recommendations

·                  Minimize physical exertion

►    Participation in strenuous gym activities should be avoided (e.g. Races, aerobic activities)

►    Participation in regular activities is encouraged (e.g. Dodge ball, dancing, etc.)

►    Leah has been advised to limit running and chasing games while out for recess.

►    Leah has been advised to self-monitor – if she begins to feel weak/dizzy/sick to sit or lay down wherever she is and request teacher assistance        
Maintain a moderate body temperature

►    Leah should avoid becoming overheated whether through play or in the classroom.

►    Leah frequently feels extremely cold and an extra sweater has been placed in her locker for these periods.  Normally she would wrap up in a blanket as well, but unsure how that would work in the classroom

    Episodes

►    At the appearance of any symptoms or episodes, Leah can be assessed and sent home if deemed necessary.  Normally she requires a lengthy recovery period before she returns to normal and this will only interfere with the other student’s classroom activities.

►    If at anytime Leah should collapse or lose consciousness, 911 should be called and she can be taken to the Welland Hospital.

Symptoms

Leah’s myriad of symptoms is both troubling and confusing for the doctor’s as they don’t necessarily point to any one condition.

• Fainting with a long recovery time afterwards
• Complaints of the inside of her head feeling “blurry”
• Dizziness
• Sudden headache
• Repeatedly rubbing at her eye(s) because it feels “weird”
• Extreme coldness
• Occasional urinary incontinence (may be related to a seizure)
• Sudden “wilting” our way of describing a series of symptoms
• Eyes go blank or flat
• Lack of energy

Lethargic

Curling into herself, head hangs down or she puts it on the desk

Difficult to talk, to express how she is feeling, or what is going on, will give non-verbal responses when possible

Very weak feeling, resistant/unable to walk

Wants to keep her eyes closed

May suddenly wander off to a quiet space and fall into a deep sleep and be confused upon waking

Could also suddenly fall asleep in the middle of a loud noisy environment (assembly in the gym)

Leah is usually reassured and calmed by physical contact, usually “craves” it afterwards e.g.  Thursday when Megan Tessier cuddled close to her on the carpet, stroked her forehead and read to her until I arrived.  She needs it to feel secure, as she is very often confused about what has just happened and self conscious/embarrassed.

History

Prior to April/May of 2011, Leah was a very energetic, bouncy normal little girl who happened to fall down an awful lot.  We had been investigating these falls with her doctor since SK, but had never found a reason for them.  We would often describe these falls as “limp noodle” falls, she would just drop, make no effort to stop herself, would not put her hands out to break her fall or reach for something to catch herself.

Since the spring, Leah’s demeanor and energy levels have changed drastically. 

Most mornings she would complain of not feeling well, sore stomach, and muscle aches and pains.  She began to have trouble sleeping.  She would frequently need to come home from school due to her not feeling well.  We began to investigate with her doctor but continued to receive results from blood work and scans that were within normal parameters.

By June it seemed that Leah was missing more school than she was attending.  On June 16^th, she lost consciousness during play day.  Her recovery time afterwards was very long and it impacted on her speech, her muscle strength, she experienced a headache that lasted for days, her head and eyes felt “blurry” for weeks and she had daily bouts of dizziness.   She was hospitalized for 3 days while they monitored her, performed extensive blood work, ECG and a CT scan all of which came back normal.  An EEG was scheduled which also was normal.

Leah was deemed able to return to school but on the mornings she felt well enough to attend, she would normally call to come home by lunchtime.  She wore a holter monitor to school for the last 3 days of school, but again, there were no abnormal findings.

Throughout the summer, Leah has lost consciousness a couple more times as well as having many of what we call episodes.  She has been seen by the Children’s ER at McMaster, her paediatrician, a consulting paediatrician at McMaster and a Neuromuscular Specialist.  We are still waiting for her appointment with the Neurologist.  She has a repeat EEG scheduled for September 19^th and an MRI on November 5^th.  The working theory at this point is some type of seizure disorder.  The sudden falls may actually be atonic seizures and she may be experiencing complex-partial seizures, and those episodes of “wilting” may be her recovery period (post-ictal state) afterwards.

Due to her continuing issues and the aftereffects of these periods of lost consciousness and episodes, Leah has trouble retaining information (will ask the same questions repeatedly), has some balance problems (she can no longer ride her bike) and can become quite emotional very quickly.

Her father and I are very concerned about how she will perform this year and are looking for options to keep her up to date with her learning; we would hate to have her fall behind, as prior to all of this she was a very good student.

At anytime I am available by cell phone or at the house phone.  I do work midnights and sleep during the day while everyone is at school, so if for some reason I can not be reached, please call my mother who lives not far away.  She can come to the school to pick her up.  My husband works in Burlington and is too far away to assist with Leah during the day.

My husband and I would like to thank you for your help and concern for Leah.  Hopefully with us all working together Leah can have a successful year and her doctors can find some answers so we know for sure what we are dealing with.

With much appreciation,

Kate and Paul Balint.