Emmilou’s Kindy Letter
When it comes to making sure your child’s needs are being met, it pays to be meticulous. I wanted to share this letter I wrote to Emmilou’s Kindy so you can get an idea on the level of detail you need to got into to make sure your child gets the most appropriate level of care…
Dear Miss Smith,
We are really excited for Emmilou that she will be attending Kindy next year, and has such a wonderfully proactive teacher to watch over her and guide her through this first and extremely important chapter of her educational experience. Thank you for taking the time to read though this information and for being so supportive of Emmilou and her additional needs- it means more to us than we can say.
We would be remise if we did not say that we were experiencing very mixed feelings about sending Emmilou to school, and relinquishing a level of responsibility and care to both you and others next year. We are above all else excited and know that she will thrive in her new environment, but we are also realistic in our knowledge that she will have challenges and absolutely need a higher level of vigilance and intervention. Our phones are always on loud, and we are never far away- so please if nothing else remember- just call, and we will come.
This letter is an introduction to our daughter, a snapshot of the obstacles she has faced in her short life, and a very detailed plan for recognising and responding to her needs. Please feel free to distribute this information to whomever you believe would benefit from it.
About Emmilou
Emmilou is an immensely passionate, extremely capable, wonderfully curious, incredibly smart, fiercely spirited and very resilient young lady who is very excited to be off to school this year. She loves being a big sister to her baby sister Elliemae, and her dog (little brother) Rocky. Her favourite thing to do is LEARN; she asks 1000 questions and we endeavour to answer them with truthful and informative age appropriate answers. She loves to be outdoors playing imaginary games (mostly centred around real life scenarios), but equally enjoys cuddling up to listen to a book. Being alone is not something she does very well… she is a social being, but has had little exposure to mixing with children her own age. She tends to gravitate towards adults- a lot! She loves to help, be reasoned with and above all else feel heard and comforted.
Emmilou does not like to be deliberately restricted (without being explained the reason), hear raised voices and be negatively discipled or be confronted by medical personnel. Her inquisitive nature (and our parenting style) has equipped her with the ability to comprehend some-what complex reasoning, please where possible take the time to explain things to her in detail so she is well informed as to the reasons ‘why’ things are being done. We have found Emmilou responds well to positive disciplinary techniques; asking her to take time out is best, and to come back when she is ready to apologise and move on from what she did. She will, when prompted, apologise and explain what she did wrong- we find this sufficient enough of a discipline. On days when medical staff will be present, for example to give immunisations, please let us know so we can adequately prepare her for this.
Emmilou is very aware and can communicate in detail her needs and limitations. She will let you know when she is feeling sore, tired, hurting, unwell, hungry… etc. Please listen to her. We know that she is 3, and will try where possible to ‘push the boundaries’, we also appreciate that some of her behaviour might be ‘age-appropriate behavioural issues’. However, in her case it is always better to be safe than sorry. You never can truly know if she is telling the truth- so please air on the side of caution. This also goes for her level of ‘ability’. Emmilou will try to push through for fear of missing out, and can sometimes appear very capable and functional- and to a point she absolutely is. Despite knowing about her conditions and needs, she does need reminding consistently to take necessary precautions; around eating, playing, resting, interacting. This is for her betterment and with her health and wellbeing in mind.
A SNAPSHOT OF EMMILOU’S JOURNEY/ HER DIAGNOSIS
We feel it is important to know a child’s story on order to appreciate their nuances and provide care conducive to their needs and with their unique experiences in mind.
In early pregnancy she was deemed a miscarriage at 3 different places and points of the first trimester- her heart beat was not located until well over 9 weeks pregnant and at 20 weeks gestation we were handed a 2 page report of abnormalities and question marks.
Her diagnosis took months following then, ultrasound scans every 2 days, multiple MRI’s and genetic tests.
After a very traumatic birth, and a long 7 minute resuscitation, Emmilou was born with VACTERLS Association; an acronym for:
VACTERLS ASSOCIATION
V: vertebrae abnormalities (Emmilou has 2 double ‘s’ curves in her spine, 9 extra pieces in her vertebrae, 3 extra ribs, 2 missing ribs and chest abnormalities) which will require multiple corrective surgeries and life-long pain management.
A: anal atresia (Emmilou took medication for 16 months of life 3x a day to empty her lazy bowl- and she suffers with clinical constipation still, and frequent stomach aches)
C: cardiac defects (she has an Atrial septal defect (ASD) and a Ventricular septal defect (VSD)- a whole in the top and bottom chambers of her heart, and a slow leak on her aortic valve), and something called subaortic stenosis (basically a ledge rowing across her heart and restricting circulation). All these issues cause her to have a lowed immunity and susceptibility to infection. She is on watch and wait for corrective surgery- but to operate now could potentially do more harm than good. She is quick to tire, is frequently lethargic, cannot regulate her body temperature and often blue from poor circulation.
TE: tracheo-esophageal fistula (she has tracheomalacia- a process characterized by flaccidity of the supporting tracheal cartilage, widening of the posterior membranous wall, and reduced anterior-posterior airway caliber. These factors cause tracheal collapse, especially during times of increased airflow, such as coughing, crying, sleeping or feeding) as a result she has had 4 cyanotic episodes since birth (blue spells- aka: stops breathing) she has slept on a machine for most of her life to monitor her SATS. She also had silent reflux that aspirated into her lungs... causing recurrent respiratory issues, feeding complications and sleep apnoea.
R: renal anomalies, none known.
L: limb abnormalities (Emmilou has club foot- which requires intervention at 2 days of life with 13 weeks of 2nd daily casting, an operation at 13 weeks and is now managed with an aid worn for set hours over time, as well as annual serial casting (for 3 months at a time) and predicted future surgeries at around 6 years old).
S: single vessel umbilical cord (yup, had this too).
She has had a multitude of surgeries, countless tests and procedures, has spent half her life as either an inpatient or outpatient at over 5 hospitals and she is still at the beginning of her journey.
KETOTIC- HYPOGLYCEMIA
In 2019 got a new diagnosis: Ketotic- Hypoglycemia: a rare, metabolic/endocrine disorder caused by a defect in the control of her blood sugar. In a nut shell- her body produces isoline but doesn't access it/ rather it goes into immediate crisis and shuts down (into a coma). The management plan of this is strict diet/ regular feedings and occasional blood sugar level testing.
Emmilou’s disability is life-long, and because it is sporadic (1 in 75,000 cases) there is little known about how it will progress and what her future looks like. All we know is that she will require a lot more intervention and a bucket load of love and support!
Perth Children’s Hospital and NDIS Therapy Supports
Emmilou is supported by a huge team of incredible doctors, nurses, support workers and therapist, whom will require a lot of her time week to week. She has a very busy schedule, and will often require time away from the classroom. Some of this support can be provided at the school; for instance her physiotherapist, occupational therapist, speech therapist, dietician, phycologist, support worker amongst others will see Emmilou at school in a designated therapy space. However, some supports require her to attend them, and of course she has her usual outpatient appointments and unfortunately some inpatient stays also.
Her therapy team are extremely accommodating, and very approachable. They might require some additional support from you from time to time, but this is all dependent on your capacity. Again, please just talk to us if you have any questions or quarrels.
How you can help Emmilou
There are a few important things to keep at the forefront of your mind when dealing with Emmilou these are as follows:
Her heart conditions requires monitoring and intervention
If she faints or becomes faint and light headed/dizzy/disoriented call 000
If she appears blue around her lips/face call 000
If she displays increased fatigue call 000
mitigate temperature issues (make sure she is never too hot or too cold- she cannot regulate her body temperature)
make sure she does not over exert herself (be mindful of her activity and monitor her heart rate)
be vigilant with infection and illness protection (a bacterial infection can be life threatening for Emmilou), sanitize regularly and keep us informed about the wellbeing of the class so we can keep her off school to protect her if need be
her heart condition makes everyday activities exhausting; If she is struggling to walk/play/engage please let us know, we will come get her. Or if she is obviously out of sorts, make her have a rest in a cool place, and drink some water
FOLLOW HER CARDIAC CARE PLAN
Her Ketoic-Hypoglycemia is a constant consideration
She must eat substantial amounts at regular intervals (every 2.5-3 hours)
If she becomes irritated, ‘hangry’ (hungry-angry) feed her some more and giver her sugars
If she is irritable, dizzy, disoriented, has tremors, shaky, increased fatigue call 000
She is a terrible eater- so needs to be supervised to ensure she is getting enough nutrition
She takes medication for this at lunch time
be vigilant with infection and illness protection (illness and infection can be life threatening for Emmilou and induce ketotic-hypoglycemia), sanitize regularly and keep us informed about the wellbeing of the class so we can keep her off school to protect her if need be
FOLLOW HER ENDOCRINE CARE PLAN
Her Skeletal System must be protected
Emmilou’s skeletal system is compromised, she does not have full range of motion of her spine, neck and foot.
She MUST be spotted at all times when on the play equipment; a fall for her could be incredibly dangerous/ paralysing and her recovery slow and painful
She cannot engage in physical sports play (i.e.: wrestling etc)
She needs to wear her orthotics as much as possible
Be seated on appropriate chairs (provided by our OT)
She does not have full range of motion or use of her left leg; hence she cannot jump and land double footed/ hop on one side/run for long periods of time
FOLLOW HER PHYSIO CARE PLAN
Anaphylaxis- Unknown Food Allergy
This is not a primary concern, it was an isolated incident. However if she displays any symptoms associated with anaphylaxis upon eating -administer her epipen and call 000
FOLLOW HER ANAPHYLAXIS PLAN
Other
From time to time there will be additional requirements given to us by her physicians and therapists; these might include medications, casting requirements, bracing, equipment aid’s, exercises, limitations, supplements etc.
Emmilou suffers from a lot of pain- she will indicate where this is. She might require a rest, a rub of her muscles or sent home- please call for clarification if need be
We appreciate this this can seem overwhelming. However, she is very alert and for the most part self-aware. The more you get to know her the more you will learn to identify her ‘normal’.
TIP: Remember we are just a call away. Or if in doubt, always dial 000!
In Summary
Emmilou has complex medical needs, and requires more support and intervention than most children in your class- but she is very excited to be at school. We wish for her the chance and opportunity to engage in school life to the best of her ability, safely and well supported. We want her to have fun, to be empowered to make her own choices and to feel free to explore her own identity. We know that you will do everything you can to facilitate this for our daughter.
We are eternally grateful to you, for taking the time to read this over and to dedicate your free time to getting to know our child better. Please if there is anything you require further do not hesitate the call us!
We have added a list of relevant information, hotlines, contacts and more for your reference and peace of mind below.
Warmly,
Emmilou’s Mums, Monique and Kirsty
