There once was a little girl who was born right on time to a joyful mom and dad – healthy and safe. She rested in her momma’s arms after birth and never left her side. The doctor came in the next morning, waking the tired momma up after a few short hours of rest. They took one look at the precious child swaddled so carefully in her blanket and freaked out. She was wide awake but turning blue. The seconds felt like hours as the doctor rubbed the child and blew in her face to get her to snap out of the apnea that was threatening to take her life. They whisked the little girl to the ICU and left her momma completely alone, confused, terrified, panicked and crying for the first time in many long years.
This is the true story of my daughter RoseBud.
After a battery of tests and monitoring, RoseBud was allowed to go home to meet her family for the first time. Everything went wonderfully well until she was 2 weeks old and turned blue again while wide awake. She immediately started breathing when momma touched her, and momma thought “maybe it was my imagination”. But no, it was not. Three weeks later she was back in the hospital – and after 8 days of every test known to mankind, Rosalie was released with an apnea monitor. It was on 24/7 until she was 7 months old. Diagnosis: unknown. Prognosis: unknown.
RoseBud was the happiest baby you would ever want to meet. She enjoyed everything – lights, sounds, tickles, snuggles, hugs, but mostly she really enjoyed flipping herself upside down. There was always a warning when handing infant RoseBud to people who wanted to hold her. “Keep both hands on her and hold her TIGHT because she will flip upside down unexpectedly”. She was amazing – she would hang there for an eternity without getting woozy. RoseBud was a special child. While most babies were cooing and babbling, she was silent or squealing with a high pitched, ear piercing screech. Like an on/off switch. She LOVED being tickled and playing peek-a-boo, but unlike most children, she never made a sound when she laughed. She just smiled ecstatically and let the joy beam through that bright smile of hers.
Speech therapy started when she was 9 months old because she still couldn’t swallow solid food without choking. Try as they might they attempted to get her to say something other than that squeal. It took until she was a toddler to get her to babble.
Physical, Occupational, and Behavioral therapists came into the home to help her. She was incapable of sitting on the floor without using her hands to keep her upright. If you brushed past her, she would fall over. She had a very klutzy gait, incredibly accident prone, and had an incredibly hard time with fine and gross motor coordination. She would not request things she needed – no pointing, no yes or no headshake, no nothing.
Rosalie was constantly sick – having 4 bouts of strep throat and several ear infections by the time she was a year old. Adding to this difficulty was her constant need to chew on things – it took years to train her to not mouth objects. She ended up having 2 ear tube surgeries and a separate surgery to remove her adenoids.
By the time Rosalie was 18 months old, her therapists suggested taking her to a neurologist for the frequent staring spells they were seeing. Rosalie had many typical behaviors: acting deaf, unusual eye contact, a piercing stare into the eyes of momma and daddy with no recognition that she was supposed to answer their questions, flipping herself upside down continually, squealing, jumping when excited and landing on her knees (even on cement!), extraordinarily high pain tolerance, obsession with one toy for days or weeks, fascination with anything green, constantly mouthing things. But her typical staring through people with a glazed over look was the one behavior that they suggested might be seizure related. Partial Complex Seizures were diagnosed, as well as something we had suspected all along: an autism spectrum disorder called PDD-NOS – because we thought she didn’t quite fit the classic autism diagnosis (she’s so friendly and outgoing – how could she possibly have autism???). She was started on the first of many different medications to control the multiple times per hour seizures.
Having less than 10 words by the time she was 3, Rosalie tested in the lowest 1% for her speech and language capabilities. She could not label any of her siblings or point to objects when asked. She qualified for a 3 day a week, 4 hour a day delayed language pre-k class at the local school. She was scoring in the lowest 20% in almost every other skill set also. Although momma forced the school to put the PDD-NOS diagnosis on her IEP, they didn’t believe she had autism either because she was so friendly. After 3 months, the school completely agreed that she had much more extensive issues than just speech and transferred her to a different school with a handicapped pre-k class – 7 hours a day, 5 days a week.
At school, Rosalie participated in OT, PT, Speech and Language therapy and adaptive physical education. At home she went through chelation, b-12 shots, medications, supplements, auditory integration and hyperbaric oxygen therapies.
Every 20 months after Rosalie was born, another sibling entered into her life. First came Daniel – the SLP tried to get Rosalie to say ‘baby’ for 6 months before admitting defeat. Evelyn came next – the day she was born was Rosalie’s first day in the full time pre-k program. Soon after Evelyn was born, momma called in behavior specialists to help Rosalie learn not to play catch by throwing cement blocks at toddler Daniel’s head. She didn’t understand why he wasn’t having any fun, even with the blood and tears rolling down his face. Many, many behavioral interventions came into play during that time because she was unable to understand the difference between dangerous and safe behavior.
Peter was born during her transition to Kindergarten. Momma, the therapists and pre-k teacher all advocated having the autism label put on Rosalie’s IEP. The school officials still did not think Rosalie had autism and wanted her mainstreamed. This was the child that could not speak more than 3 word sentences at 5 years old and could not accurately answer yes/no questions. This is the one that body slammed into friends as a way of saying “hi! I like you” and was at the nurses office at least twice a week for injuries involving blood or swelling. The child that spit on people, squealed, jumped up and landed on her knees, spun in circles, never sat still and bit her teacher when over stimulated – this was the child they wanted in a class with 18 typical 5 year olds and one poor unsuspecting teacher! After testing her, they gladly added “Autism Spectrum Disorder” to her IEP.
Rosalie has been in the autism classroom for 2 years – learning to read, write and do math. She has also been learning how to keep her hands to herself, not get into others personal space, walk in line quietly down the hall, not take toys from others, engage in play with peers in an appropriate manner, learning how to cut with scissors, potty train (an ongoing struggle even at almost 8 years old), sit in a chair correctly and how to calm herself down when her AD/HD gets to be too much to handle.
Rosalie’s IEP is specially designed to make the teachers aware of her special needs for hydration and monitoring of her seizures. Her teachers report seizure activity so that medications can be modified accordingly. There is an aide on her school bus for help with both seizure monitoring and entry/exit off the bus. Her adaptive PE class includes swimming lessons 2 days a week with vigilant monitoring, just in case.
In November of 2009, Rosalie had yet another of her MRSA staph boils – probably her 4th one in a year. This time it was on her left hip. Two days later she woke up and seemed fine, but about an hour later after sitting on the floor watching TV she tried to get up and fell flat on her face. Being so language delayed, she could not express what was wrong and just looked at momma when she asked “what’s wrong?” Rosalie had a very odd look on her face but would not talk. Momma tried helping her stand up, only to see her crumple to the floor again. Rosalie was like this on and off for 6 hours that day – but as we were waiting in the E.R. it went completely away, so we walked out of the ER and just wrote it off as some strange interaction with the boil.
December of 2009 – Rosalie had another MRSA boil, this time on her chin. Two days into the antibiotic treatment momma went to check on an odd crying noise from Rosalie’s room. She found Rosalie on the floor in a puddle of vomit crying a very unusual cry. She went to pick Rosalie up but Rosalie was fighting her so she let go – and Rosalie’s face slammed into the wall with enough force to bust her teeth through her lip. Rosalie was in the middle of a grand mal seizure that lasted almost 10 minutes. The after-effects lasted several hours (vomiting, confusion, exhaustion, nystagmus, and dizziness). That night was the first time the ambulance was called to the O(mitted) home. She was released the next morning with the express instructions to discontinue the antibiotic, which they supposed was the trigger for the seizure. She had another grand mal seizure the next day but it only lasted a minute or so and wasn’t nearly as intense.
This was the start of the odd seizures that cause her to have left sided weakness, dizziness, shakiness and oftentimesdisorientation for hours afterwards. The doctor thinks this is not the actual seizure – it is an after effect of a night time tonic seizure (where her left leg gets really stiff and she makes odd vocal noises). He calls it the ‘post-ictal’ stage of the seizure where her brain is getting over being stunned by the electrical impulses of the seizure. Whatever it is, it is now happening at least 3 times a month. The very first time it happened at school her aide carried her off the bus, thinking that Rosalie was being defiant and didn’t want to go to school. She set her at the bottom of the steps and let go and Rosalie fell face first into the sidewalk. Rosalie couldn’t tell them she was having a seizure. She regained her balance, but only until she made it to the bathroom, where she promptly fell to the floor again and laid there until the teacher came into the bathroom to check on her (she wouldn’t verbally respond to the teachers calls.) That was not the only time these odd seizures struck at school.
After all the years of struggling and hard work, Rosalie has overcome so many of her autism issues. She is still regarded as different because of her many unique mannerisms, her delayed language abilities, her unusual eye contact and social interactions. But she has come so far from that little girl who could not talk or point and would fall over when attempting to put her sock on. You know – the one who would spend 4 hours opening and closing the bottle of bubbles and threw massive tantrums when the lid was taken away. She has progressed so much – and all the praise goes to God.
We are working to get Rosalie on an AD/HD medication but it is a mysterious struggle to find the right one. Just as any child with AD/HD has to go through a trial and error process to see which medication works well for them, she has had the added struggle to find one that will not exacerbate her seizure disorder. She is incredibly impulsive and active. It interferes with her daily functioning to a great degree – whether at home, school, church, or out in public.
Rosalie is still having break-through seizures. Medications need to be changed and modified to be effective as Rosalie grows. Medication is not a static part of Rosalie’s life, but a fluid, ever changing part, as it will need to be monitored and changed as she grows, gains weight, goes through illnesses and other symptoms manifest.
Her medications have nearly doubled in the last 6 months to try to keep the seizures under control. It isn’t that her seizures are more frequent. It is that she has started having more physically debilitating seizures. Ones that could potentially be life threatening. And the doctors can’t find anything wrong (even with blood tests, ambulatory EEG’s and MRI’s where she had to be anesthetized in order to do the contrast material) – there is no known cause. Why has she gone from a child that stares through you during her partial complex seizures to a child that drops to the floor unexpectedly and bashes her face open? Does this mean it will get worse, or have we seen the end of the progression of this seizure disorder? Only God knows, so we leave it in His hands and pray.
This is the true story of my daughter Rosalie.
This story is not finished. One day this story will say: “…and with the help of her service dog she overcame so many challenges.”