By: Kathryn Connors, Regional Parent Liaison
As I sat there, looking around the table, looking at over 20 professionals after having to share the most vulnerable part of my life, my ability to parent, and the undeniable needs of my daughter; I couldn’t help but think, “Is this really happening?”. I know things had gotten bad, so bad that we feared for her safety, and that of our younger two children, but never, in my wildest dreams, when I first started out in my adoption journey would I think that I would be begging for more help for my child.
My husband and I started out on our adoption journey excited, and ready to add a child (or two. Or in our case three) into our lives. I always remembered as a child when family or teachers would ask me what I wanted to be when I grew up, the answer was inequitably a Mommy. We saw our daughter’s profile at the April 2013 Adoption Resource Exchange, or as fellow adoptive families know are the ARE. A 3-year-old girl, given a very rough start to life. A little girl who had more diagnoses than I had fingers on my hands. Born in severe withdrawals, non-ambulatory, non-verbal, helmet, deaf/blind…this list goes of. As the hundreds of other prospective families passed her profile by, there was just something about her that we (my husband and I) just couldn’t let go of. Fate? Guilt? Love? Maybe all three combined? Either way we started on a journey to raise a child with incredibly complex needs. Soon after we were matched with her baby brother, and off we went into this parenting journey.
As with any parent, the first few years were a bit rocky, for us, It may have been a little more so. Weekly therapies, doctor’s appointments, special equipment, dietary challenges. This just became our new norm. And yet under all of this, was a spunky, loving little girl who loves all things Disney, swimming and cuddles. We knew her self-injurious behaviours were going to be an on-going challenge. After she started school, we got our first glimpse into just how challenging. Within the first few months our daughter had broken her jaw, lost 7 teeth, and given herself more concussions than I could count. As she got bigger… so did her behaviours. So, we did the only thing that we could, we immersed ourselves into the complex special needs world. Paid for as much private and intensive therapy we could afford, got referrals to all the doctors, tried all the meds, and called our CAS asking for help. There was always a glimmer of hope, as we knew there had to be someone, something that could help our daughter. Soon after her 7th birthday, after years of intensive intervention, we began to hear the same phrase from everyone, “We’ve done it all, I have no further recommendations”. One-by-one we were discharged--too behavioural for behavioural intervention, maxed out on all her medications and discharged from respite due to high needs.
Somewhere within this chaos that became our life, my husband and I found a balance to ensure our two younger children maintained some sense of normalcy in their lives. Her needs were great, her behaviours unimaginable, but she was still a little girl, looking for love. We also managed to find ourselves some amazing respite workers, who love our daughter like we do. They are in many ways, a part of our family. It was the support from them that allowed us to still have family experiences like going apple picking, visits to the zoo and family outings. All holidays celebrated at our house to make things easier, and safer. We were in many ways, able to manage. That was until we couldn’t.
So we called our service coordinator, and said what every parent dreads “Our daughter needs more than what we can give”. Months of calls and meetings later, we were referred to an organization called Service Resolution. An agency meant only for complex children who haven’t been able to find support through the typical channels. The board is made up of several community members and well as representatives who report directly to the Ministry of Children and Youth Services. It was at that big board meeting that I bared my soul, and shared that we were afraid she would seriously injure herself, or our younger two children. It was at that meeting that the suggestion of a short term residential treatment facility be considered. A 3 month stay where they would re-evaluate her medication, implement an intensive behavioural intervention plan, provide more testing and exams and just really try to find out what was happening with our little girl that baffled the medical community. She would be the youngest child to ever be referred to this type of facility, but it was unanimous, that it was needed.
So, perhaps in shock, we started the paperwork, had more meetings, appointments, and signing consents. We went on a tour and realized that this scary place we had built up in our minds, was actually a pretty good facility, filled with staff who truly cared…. and that once glimmer of hope that had long faded began to sparkle a little. We were told the wait would be anywhere from 6-8 months, which also gave us some solace.
The wait began. At home, 911 calls, waking up (and staying up) from 4:00am, and wiping blood both off her and ourselves became almost routine. By the time we got the call for her to be admitted, we were so exhausted both mentally and physically that we agreed. I spent over a week packing her clothes, labeling her items, and ensuing I was bringing everything to make her feel more a home, while away from home. We also were told that she could come home some weekends, allowing our attachment and bond to regain some repair. We packed everything up, and off we drove to the residential facility.
After a long admission meeting, ensuring she was comfortable, we gave her a hug and kiss and walked out the door. My husband and I remained silent, perhaps scared to even acknowledge what we had done, and started our three-hour drive home. It was hard to process it all. The mix of emotions, the fear we had about what might happen, how it would affect our younger two and us as a couple. At one point, my husband turned to me and said, “It actually wasn’t as hard as I had thought.” And he was right.
At home, we continued the dialogue with our younger two, and ensured they were getting the appropriate therapies to help cope. Messages of love and support from our friends and family really helped us through the first few days. We were able to connect with other complex families that have also been through similar experiences, and little by little, the voice in my head that once yelled “YOU FAILED AS A MOTHER” began to calm. Our house still seems too quiet and too clean. Somehow, I miss our 4am snuggles on the couch, the food art she would leave us on the floor and walls and the company of the respite support that had become ingrained into our family. But, we are finding our balance again. Self-care, a word that I often spoke of, but never did, is becoming the forefront of my life and I find myself genuinely enjoying our weekend time together as my role of caregiver, nurse, therapist, advocate is turning back into mommy.
As I type this, my daughter still remains in the treatment program with a discharge date of just before Christmas. This experience has taught me so much, and I know the lessons aren’t over. To anyone else who may be facing this somewhat unthinkable challenge, please know, you aren’t alone and that sometimes, the best way to be a parent, is to know when your child needs more.