The Story of Roo - her road to autism

She's 6, part diva, part princess with a rainbow of colors in between. Roo is a twin, technically a middle child though developmentally the eldest. From the day she was born she was delicate, almost fragile. Demanding, intense, yet the sweetest baby girl. Her Uncle Shawn summed it up best when he described our little Irish lass as having devil horns to hold up her halo. Despite being born 6 weeks early, a twin, and under 5 lbs when she first came home - she has always had a warrior's strength/spirit.

At 6 weeks she was hospitalized with RSV. It was the start of a long chain of medical events she has encountered day in and out since then. She was often extremely fussy even when there were not explained outward signs of sickness. Other times she would get peculiar rashes, sunken dark circled eyes, a never ending runny nose, and blistering diaper rashes, despite chemical free: detergents, baby wash, diapers and homemade wipes.

 Each well baby check in which she was vaccinated, 2 or more sick visits followed. Endless crying, overall notable discomfort, rashes and infections that were treated by her pediatrician's direction, with antibiotics, steroids, pain relievers, and a virtual slew of other pharmaceuticals. I was naive, overwhelmed with 3 children under 2.5 years of age. My eldest child, Roo's big sister, already had extremely complicated medical issues ongoing and a developmental delays associated with Down syndrome. In that time, I couldn't see the forest for the trees. All of the now glaring signs of Roo's intolerance of her vaccinations, in hindsight were buried amongst the chaos of caring for psuedo-triplets, while 85% of the time I was solo in doing so. I was nursing preemie twins, and caring for a toddler whom had profound special needs. Meanwhile, back in that time, I wasn't connecting the downward slope of my Roo's health, and I thought we were doing everything we could, as we were always under the pediatrician's roof. Even so, the unexplained fevers, watery eyes, clear runny nose, asthma, colic, diarrhea, skin erruptions... by 1 year the list was long. 

At 13 months, Roo's twin (S-bear) regressed sharply into autism following his last group of vaccinations. The twins had received 9 total in that well baby appointment, including the MMR. For the first time her twin became more sick than she; he was feverish, lethargic, had crazy night waking, loss of language, stopped smiling and looking toward his name being called, nearly oblivious to our existence, etc. His extreme decline masked Roo's less drastic slope downward. I was frantic at what had occurred with our son's plummet into regression. I spoke to our pediatrician multiple times, specialists, and was told over & over, there is no connection between vaccines and autism. It was shortly after this time when we were surprised with news of our last pregnancy.

After her 13 month vaccinations, Roo's existing medical issues ramped up and she began to cry at sudden/unexpected/ high pitched noises, didn't like to be sung too, made fleeting eye contact, resisted affection, and often struggled to simply be still. I was always brought back to an explanation that "she was a preemie, her immune system is premature too. She will catch up. She's sensitive... It's her personality." She was/is sensitive, but its the bio-chemical/physical sensitivities she had which lead to her neurological and physical regression. It was a slow slope until 3.5 years old when she fell off the canyon wall, full on into hard regression.

She wasn't always so impacted, but the cumulative medical (immune system) damage had been done by the same tipping point of her twin, in the first year of vaccinations. By 15 months she was very verbal - knew her alphabet and numbers, by 18 months - speaking in fluid conversation by 2 years. Her twin was non verbal then. Around 18 months she would talk to herself about her hands hurting, ask herself "are you ok?" then would recite to herself the words of comfort in a script as I would typically do in reassurance to her. A complete blood work up revealed a big fat nothing and the pediatrician told me likely she was seeking attention over her siblings. Yes, she was demanding of my attention, although she wasn't seeking attention for this, because she was speaking to herself not knowing I saw her. This is when I began to look outside western medicine in a much broader scope. We went to a highly recommended Naturopath MD around this time for all 3 of the children to get food allergy testing done & in addition began working on healing their inflammed and damaged gastro-intestinal systems. They became a little better in behavior & sleep, although it was a long road. More on this in another post.

Roo continued to be susceptible to all & any virus, which often turned into an infection. Her environmental allergies were immense (atop the numerous food allergies) & she generally always looked tired. Her little immune system had been nuked and we did so much to keep her stable, although again, it was such a circus having now 2 kids in Early Intervention therapy & 3, under the age of 3; while expecting our 4th baby. Special diets, crazy routines that seemed like rituals to just survive the "need for sameness" of Sbear & Bella (really Roo, too). I'm sure, a lot of our family thought we were crazy-- we were nearly so, but not because of the things we chose to *take care* of our children. Our sanity was challenged by the energy, physical, mental, emotional, financial & overall life exhaustion that came along with it. We didn't see the choices of their special diets, supplements, intense therapy, & all the intricate details of their care, as a choice. They deserved our utmost support & how could we choose otherwise knowing all of it helped them.

Because Roo's immune system was so poor & her health so complex, she got to a point at 3.5 years old when she harshly crashed. Her body was simply worn out, by constantly working overtime just to be. She got a virus that spiked very high fevers, couldn't walk, didn't eat. I had to syringe water/pedialyte into her mouth in very small amounts around the clock to keep her hydrated. We had two ER trips over a couple weeks time, in addition to the regular pediatrician visits, the second ER trip ended in an ambulance ride, as she was unresponsive to spoken language or our touch & she appeared to be hallucinating. The ER physician said she looked septic, and she was whisked away to the nearest Children's hospital. We were released later that evening after IV fluids, oxygen & nebulizer treatments, but she was far from better.

Fevers remained intermittent & she still could not sustain any energy. She completely lost her toilet training, with continuous daytime wetting; when she had been previously 100% potty trained day & night time for over 6 months. The following month's time brought a loss of her bowel control. We saw several specialists, but a neurologist was never recommended. Meanwhile, I still had other children with extreme needs at home to manage. Her kidney damage was diagnosed and information from the treating physicians was frankly useless.

Roo's social connectedness became much more disjointed. She had difficulty relating to others in her peer group, preferred only adults. Separation anxiety & just anxiety became major obstacles. Her sensory challenges were even more so amplified. This In itself triggered her anxiety & it was a vicious cycle. She spoke much more in scripts repeating entire dialouges in proper contexts, just as I would have said them to her. She had difficulty expressing spontaneous speech, recalling information and answering simple questions. Her mind was brilliant, yet she lacked empathy, resisted touch & affection. Her self-inflicted rules were specific & not even remotely flexible. All these other things that followed the major physical, medical regression, left her in the category of Autism. Her official diagnosis came on her 4th birthday following 3 days of intense neuropsych evaluation.She wasn't even the same child outside our home, especially at school-- she chose to be silent & withdrawn. The evaluating doctor first told me she thought she was "selectively mute" after the initial school room visit. My heart sank, because I knew how much she must have struggled at school, while the staff there must have just thought she was intensely shy. That representation of Roo was the complete opposite of her abilities and her personality. At home she was a dominating conversationalist & a force to be reckoned with. I wonder how many *high functioning* kids slip through the cracks in this regard.

Two and a half years later, she has come a long way. We have spent that time diligently working on all aspects of her health. She falls into the autism spectrum near Asperger's syndrome. Health is still her number one struggle and the medical issues are deeply entwined into her presentation of Autism. She is recovering, progressing, and blossoming. It is just a delicate dance between the setbacks of her fragile health. Her challenges are still REAL, and though perhaps subtle to those not familiar with the spectrum of Autism and all the intricacies involved, her struggles cause her much stress. She is a warrior disguised as a princess. She is a success driven angel who strives to be better everyday. I am proud of you, my darling Roo & I will never give up on helping you heal. xoxo Momma

1 comment:

  1. Such a sweetheart and such a lucky girl to have you as her momma. Hugs all around.