Support Needed to Identify and Address Latent FASD in Adopted Children
My husband and I adopted our son in eastern Ontario in January 2007 at the age of 11 months. He was adopted out of foster care, having been removed from his birth home at the age of 5 months for chronic physical and emotional neglect, and exposure to domestic violence. Our son was amazing- an early walker, huge eater and very, very sociable. At the outset, he had issues with regulation and sleeping, but this was to be expected during his transition as a toddler.
After three months of testing, we were furnished with a very different picture of our son's mental health than we'd begun with - he tested in the moderate range for most things, but was diagnosed with Fetal Alcohol Spectrum Disorder.
Over the coming years, and certainly once formal daycare and schooling began, our son began to confront significant challenges with physical aggression, disruptions, and behaviours inconsistent with what we knew of his early development. We engaged all varieties of professionals that we could, and obtained a very thorough (and expensive) private neuropsychological examination to ascertain any brain-based evidence of delays.
This assessment was holistic, and examined each variable of his developmental progress - physical, cognitive, and social, amongst others. After three months of testing, we were furnished with a very different picture of our son's mental health than we'd begun with - he tested in the moderate range for most things, but was diagnosed with Fetal Alcohol Spectrum Disorder; this included profound anxiety, sleep disorder, and sensory processing deficits. His behaviour was escalating at home and at school, and his frustrations, raging tantrums and lack of any healthy level of sleep was having tremendous impacts on our family.
We have steadfastly and un-endingly searched for supports for him and for our whole family; positive trauma-based parenting training, attachment therapy, trauma therapies, neurological/psychological/physical medical investigations for underlying causes, school support services, respite and other FASD services. In the end, we have been consistently reminded of 4 things:
1. Our son has a permanent and unchanging brain injury. While a diagnosis can assist with seeking school based accommodations, the field of FASD "treatment" is embryonic, therefore, there are no specific services available for him or for the family. Full-time close supervision and structure -- this is the available 'prescription'; we'd best look for some good friends to help out.
2. His injuries were not divulged at the time of his adoption, and he was therefore not a 'special needs' adoption. Our efforts to secure small periods of respite through the CAS post-permanency subsidy were nothing short of Herculean. We received short-term, temporary funding for emergency respite only (with a clearly defined end-date) because he is not considered to be eligible for ongoing post-permanency supports, despite his profoundly challenging behaviours and the thick files of medical documentation available to the agency.
If FASD testing had taken place pre-placement (as is the case for all crown wards in Alberta), we would have been better equipped with the knowledge of his needs much earlier in life, and begun to look for other families and innovative services at the beginning of our adoption.
3. There are many, many, many families living this very same reality, and confronting the same obstacles we face in getting appropriate post-permanency services for their children. While the knowledge of these other families is reassuring, it is no less isolating in our search to help our son.
4. If FASD testing had taken place pre-placement (as is the case for all crown wards in Alberta), we would have been better equipped with the knowledge of his needs much earlier in life, and begun to look for other families and innovative services at the beginning of our adoption. The services that are privately available (respite, special needs camps, counselling and therapies, tutoring, and legal representation when our children run into conflict with the law, etc) are tremendously expensive and well beyond the financial reach of most adoptive families. It is absolutely not unrealistic for these services, critical as they are, to be covered for other special needs adoptions where the needs are known in advance. Ontario has much to do to ensure that families adopting children with FASD are better supported to ensure the best possible outcomes for our children.
For children to reach their full potential, they need families that are supported and positioned to help them.