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Shattered dreams... Can you relate?

Part Two

So, to recap, I had left my dream job, that felt like a nightmare, to pursue my dream family. That's how it works, right? Just go off into the sunset for my "happily ever after"? Well, I hadn't gotten the memo that it's not how things work. At least, that's not how this story ends.

I am now a mother to two daughters, six years apart.

Our eldest was atypical in some ways, from an early age, in ways that didn't impact our lives negatively beyond what I could handle, most of the time. Except sleep, that one was rough for a while.

When she was 18 months, I took a contract position as an Educational Assistant. I worked within both standard classrooms (Gr. 1-8) and a class that was exclusively for students with behavioural and educational challenges. Near the end of my term, I held a one-one-one position with a grade 8 student with autism who was nonverbal with a severe intellectual disability.

A few years later, when my daughter was 5, I opened Milestones Daycare, to work from home and provide social opportunities for my daughter, as we homeschooled. I was passionate about educating families in the area of child development so I included monthly documentation that shared observations of their child at daycare that spoke to their strengths and highlighting upcoming growth.

When she turned 6, I noticed that while her exceptional abilities were growing her challenges were adding up. I was at a loss to help her with the Early Childhood training I had. We thought she was depressed, so I closed my daycare and we took her to a psychotherapist, ready to focus on her 100%. That was not fruitful, as she struggled to express herself verbally with emotions and memories, which was surprising as we thought she otherwise had strong communication skills.

Around the same time, my youngest daughter was born and had significant medical issues (that seemed to have traumatized our eldest), causing us to call 911 more times than I cared for. We had many questions about both our children, and no answers.

As time went on, our youngest was displaying severe challenges including daily physical aggression towards her sister, myself, and our pets. She would also escape from the home, meltdown in public or family events, didn't sleep through the night, was a picky eater resulting in failure to thrive, severe separation anxiety, night terrors, bouts of extreme crying/screaming, ongoing rigidity, destructive tendencies, consistent refusals to cooperate, we couldn't travel far from home or for long, social and communication delays, and more. Though she was verbal, she couldn't express when she was sick or in pain at times (one time at 2.5 years old she had strep, another time a kidney stone at 5, and we had no idea, just escalated behaviours and screaming).

We sought out several referrals leading to many developmental pediatricians, all with different perspectives. None seeming to answer all of the even deciding it was poor parenting. That's not a fun day. I think that's even on a parent's top 10 list of bad situations. I felt better though after his mandated one-on-one parent training session ended with no answers for specific challenges. Especially, when he couldn't explain why she hated being in the car so much at 3 years old she would unbuckle her 5-point car-seat harness with hulk strength and try to open the car door on the 403.

At the end of the parade of pediatricians over a couple of years, we had collected diagnoses of anxiety, ADHD, and Oppositional Defiant Disorder. The aforementioned doctor said he didn't want to label her. We also had a plea from one doctor to avoid a diagnosis and said she will grow out of it, she just has a strong willed temperament. Oh yes, and one other doctor wanted to give her anti-psychotics at 4 because she was concerned that she was headed for Conduct Disorder (so was I, but serious meds were not my first pick, but no judgement on others for their choices, as it was tempting for a moment). We were burned out and hopeless as none of this led to help, which is really all I was looking for. I didn't care if it was called banana syndrome, we were in crisis.... all. the. time. Even our regional supports for child crisis intervention, twice, were at a loss regardless of the best efforts of several staff.

I persisted and found a local child Psychologist who, after an initial intake with my husband and I, hearing our long-winded tale of woe, suggested she could be autistic. Though you likely saw this coming, for me it is was one of the most profoundly shocking and humbling moments of my life. You could have knocked me over with a feather, it felt so surreal. I had always been on the other side, the professional side, not the "it affects me personally" side. That was a whole different dimension. I suppose I had chosen to be in denial, as I had commented to my family a few times that the delay in communication and social skills were red flags for autism, usually met with dismissive comments from others. I honestly had just thought I was projecting my professional training onto my child and didn't want to apply my bias to her. I had immense guilt that I had waited this long (though she was only 4) to test out this theory. I was however reassured by three things: a) the training I had many years earlier was mostly based on studies done with boys, we now know that girls can present differently b) It was not within my scope of practice to diagnosis and c) Our Psychologist said he would have waited until she was 4 anyways to diagnose to ensure that she was past the range of doubt for a delay in development.

Originally, we dismissed the Psychologist's initial suspicion, for a silly reason... our eldest daughter had similar issues, though they were expressed differently. Cue a formal autism diagnosis for our eldest, days before her 12th birthday, 2 years later.

Looking back, it's all so clear, but again, girls can present differently, and my experience of autistic clients, way back when, were mostly boys and they were usually nonverbal.

Another path it took us on was the light it shined on my marriage. This development with our daughter connected some dots that led to my husband's autism diagnosis, within one month of our eldest's. Yes, my handsome, helpful, Engineer husband, who loves me unconditionally (that's hard to do), is a great cook, an awesome dad, and is autistic. So, if you did the math, my husband, both my children, and I are all autistic, and we only figured that all out over the course of the last three years. After 22 years, we still commit to walking together through this crazy life with our set of hurdles and we are thankful for some answers.

Did you know...

…that if you have one autistic child, the odds are higher that a sibling and/or a biological parent may also be autistic? Are you reading this as new information and are wondering if that applies to your family? It may be worth looking into, not because a diagnosis is the end all, be all but, if you are seeking help and answers, it has the potential to do that. If someone is autistic, does or doesn't know it, and that entirely works for them and those around them, great! If a family is seeking help and change, a diagnosis can sometimes do that, but other times isn't necessary, especially with the excessively long wait times for professionals and it may not even help. The punch line I referred to earlier is closer than ever, again, doesn't require a diagnosis, and can even help non-children, aka, adults. Hold on, we're almost there!

So, are you wondering if I bounced like Tigger, right out of that Psychologist's office, and successfully used my ABA background to help my children for free to make everything all better, like some type of far-fetched movie plot? Well, here's the disappointing news. Nope. Did I try? 1000% I did, and fell flat on my face. The first thing our psychologist did the moment the ink was dry on the diagnostic paperwork was recommend we go straight to the government autism program for ABA/IBI and NOT to attempt to do it myself. Was it because he knew the secret of my IBI failures before having my own children? Nope. He knew I would crash and burn like an Indy 500 racecar if I took that on, especially since we had been in crisis for four years and burnout was already nicely nestled in for the long-haul. Yes, I did register her into the provincial autism program right away because I had no idea it was controversial as I had been out of the field for several years.

So, what did we try before the thing that actually helped? We did dance classes, music therapy, dance movement therapy, piano lessons, Occupational Therapy, speech assessments, an obscene amount of sensory toys and equipment (we even made a sensory area in our home with swings, crash pads, parachute, trampoline, interactive lights, rainbow aquarium, musical light projector, etc.), respite, fidgets, ear protection to muffle sounds, special sensory and structured seating at the table, visual magnet schedules, special sleep/wake clocks, weighted blankets, mattress sleeves, sensory sack, and more.

We even had heavily considered a service dog due to her severe separation anxiety with my husband who worked full time in another city and her tendency to run in the street, away from our, and my mother's, home, and in stores. We did our research which led to a deposit on a puppy that would be selected specifically for the best temperament and a specialized trainer lined up, for a hefty sum, of course. Instead, a 4 year old non-service dog fell from the sky with the exact breed, colour, gender, and temperament that we had specified, for free (his owner had unfortunately passed away). What more could you ask for? Turns out she was NOT a dog lover and there was no changing her mind. Thankfully her animal abuse phase had subsided and "Bubba", the sweetest, canine version of Eeyore but in a 100-lb. black English lab is now my daily snuggle buddy.

Eventually, after our autism program application was lost in the mail for months on end and was resubmitted, we finally received funding... 18 months later. This was during a shift in the program where instead of being placed on wait-list for government provided IBI which could be years long, we were given a pre-determined amount of money, based on her age only, to use as we saw fit, as long as it was on their pre-approved list of services or items.

We were able to find a local, private provider of ABA that we could use funding money for. There wasn't even a long wait time to get in. That's because I initially asked them if I could get some parent coaching to help me implement some ABA ideas I already had to help my daughter. I didn't want my training to go to waste but I understood the value of having a 3rd party involved since my training was a bit dusty, I didn't have confidence from my previous experience and I was hanging on by a thread mentally (plus it's not a good idea to design and run your own IBI program). We worked with an amazing BCBA who understood and supported what I was trying to accomplish. She and I collaborated on program design for me to implement, with regular supervision. Plus, she was the only one who finally, after years of searching, found someone to teach us safe physical restraint (wait for it).

Ok, another disclaimer... I know there are also mixed feelings in this area of physical restraint. Please understand that we felt it was necessary at the time because she was a danger to herself and others. At 6 years old, she was threatening to kill family members (including coming at me psycho style with a kitchen knife trying to cut me in an angry outburst), would throw our cat down the stairs and laugh, and had no remorse, especially if someone was sobbing from an incident. She would pick up the largest item in a room she could and throw it at you or damage it, throw herself against closed doors until she hurt herself, and would slam chairs against windows or to the floor nearly breaking them. She would respond to anyone trying to console her lovingly with a punch, kick, pinch, headbutt, scratch, or bite. Ignoring this type of undesired behaviour was not an option. Nor was leaving her unsupervised in a room to take a mental health break as she would immediately try to break the bathroom door down where I was collecting myself. If she couldn't get to me with her aggression she would seek out pets or her autistic sister who would freeze and be unable to find safety independently. My non-violent crisis intervention training had been over a decade prior and was only available to access for active professionals. We didn't know what else to do. We were scared for her and ourselves.

Anyways, after a couple months, we ended up having the opportunity with the same provider to bring in a trained staff (RBT) to do one-on-one ABA with her because I really had bitten off more than I could chew, just as our Psychologist had aptly predicted. This brought on more feelings of failure because once again, I couldn't cut the mustard with ABA. This time was different though. It wasn't like before when I had a lack of experience with children with challenges, I now had several years of living 24/7 with them. This time was because I had too much experience with children with challenges, and was a shell of a human, experiencing advanced levels of burnout. In fairness, my mother was a blessing as she would babysit a couple times a week and give us a night off here and there, but at our home because our daughter refused to sleep anywhere but her own home. Regardless, I did not have capacity and I did not feel safe in my own home. I'm a doer. A fixer. A get-things-done type of girl. It was crushing that I had to admit defeat.

Over the next several months, I still worked with our BCBA to design programs the therapist would implement that I was comfortable with but honestly, while some smaller things improved, the big things really weren't budging, even though our daughter loved her therapist, Janet, and would look forward to her coming. As summer does, it brought staff vacations and company shutdown for training. For most of August, we were expecting a hiatus from ABA and I really needed the break as we had planned to transition into less hours of therapist-led programming and more parent-led as we prepared to phase the provider out due to limited funding. I was losing hope that we would ever get where we wanted to go, until one amazing day, I got a message...

Join me for the third and final blog post in this series to discover how our lives transformed and what gave us the hope we were desperate for!

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