Saturday, September 12, 2015


Special needs parents speak in code. ARND, SPD, ASD, ODD, OCD, pFAS, FASD, RAD, DSM...our alphabet kids have complex, often overlapping, sometimes conflicting needs.

Often, the letters dictate what services are available and what understanding comes with it. And changing out a couple of letters can change things for better or worse. Here's a primer of a day in the life of an alphabet kid.

ARND- Alcohol Related Neuro-Developmental Disorder. This is a form of FASD (Fetal Alcohol Spectrum Disorder, the umbrella term for a host of problems caused by consuming alcohol during pregnancy). ARND has the cognitive and behavioural deficits, but typically doesn't have the facial clues. Since the facial signposts such as no ridge between nose and upper lip, smaller eyes, smaller upper lip etc only develop in a specific timeframe during pregnancy, many children have a form of FASD with no facial cues, yet professionals tend to dismiss FASD if the facial deficits are not present.

ARND comes with learning difficulties, behavioural issues, cognitive impairments and lack of impulse control. Kids with ARND have trouble with cause-effect, abstract thinking, action-consequence and a host of other things like remembering how to tie shoes, bath etc.

Because ARND and all the other FASD spectrum are not recognized on the DSM-the Diagnostic and Statistical Manual of Mental Disorders, the bible of psychological and psychiatric diagnoses, it is often mis-diagnosed as ADHD, or dismissed as bad parenting. Teachers without specialized training in FASD have a hard time working with special needs kids with ARND/FASD, and so do many health professionals, law enforcement and the criminal justice system. An adult with ARND cannot control impulses, and often can't associate cause and effect or action consequence. See it, want it, take it...think toddler brain...

SPD-Sensory Processing Disorder. Imagine Costco on the Saturday before Christmas-the lights, the smells, the people, the noise...and that is SPD. Kids with SPD have sensory overload/underload issues. They may not be able to tolerate labels in clothes, seams in clothing, the fan in a heating unit that is white noise sounds like a floor sweeper, the hand dryer in the washroom has them covering their ears. Kids with SPD have a hard time in crowded places and can shut down or melt down.

ASD-Autism Spectrum Disorder The catch-all category for a range of behavioural and developmental issues. Teachers understand that with ASD, it's a can't, not a won't.

ODD-Oppositional Defiance Disorder In a nutshell, I say black, you say white 100% of the time. Kids with ODD take strong-willed to 2.0 and often have problems with not only parents but authority figures in general. ODD on a kid's file is a one-way trip to detention, even when it isn't warranted.

RAD-Reactive Attachment Disorder In simple terms, kids don't bond with parents or caregivers and is often seen with kids whose basic needs weren't met. Kids adopted out of orphanages, or who were pinballed through the foster care system tend not to develop healthy attachments because they learned pretty early that they would just get ripped away anyway.

OCD-Obsessive-Compulsive Disorder Characterized by ritual or repetitive actions that the person feels they must complete to feel safe. Think Jack Nicholson in As Good As it Gets and his locks, plastic cutlery and avoiding cracks in the sidewalk.

There are subsets to many of these diagnoses. For instance, under FASD, there is FAS, pFAS, ARND, FASD, FAE, ARBD and a bunch of other letters that delineate the degree of impairment. In SPD, kids are typically a seeker or avoider.

When special needs parents get together, we shortcut with our diagnoses with the letters, and it's common to see things like "My 10 YO ARND, OCD, SPD-avoider" or my "8 YO pFAS, ASD, RAD" or my "neurotypical 12 year old" which is code for a child who doesn't have a bunch of letters.

Trying to get a specialist to GIVE you the letter can be a challenge, because many of the behaviours overlap. So a kid with SPD may be mistaken for a kid with ADHD, because the chair is too hard and they can't sit still. A Kid with ARND may be mistaken for a child with ASD, because the cognitive, executive functioning issues are very similar, AND you can have a ARND child who also falls on the ASD spectrum. And don't get my started on misdiagnosis...

Some alphabet are helpful-for example ASD is now more easily understood as a "can't, not a won't" and teachers, medical professionals, and slowly, the general population are cluing in that the kid is doing as well as they are able to do. There are lots of supports in place now that didn't exist years ago, and movies like "Temple Grandin" are changing the stigma about kids with ASD.

Conversely, a diagnosis of ODD, while accurate, is not helpful. Teachers see ODD and assume the worst and hedge their bets with quick trips to the principal's office or detention at the first sign of trouble. These kids don't often get a chance to prove themselves.

None of these letters define our kids, but they can either help or hinder their school experience. FASD in all its incarnations is much less well understood, because it isn't an "actual" diagnosis, although there are many people working very hard to have it included in the DSM. Howie Mandel has done a great job clearing many misconceptions about OCD and helping educate people that it isn't something he can control any more than he could control his eye colour.

Our alphabet kids have a lot of challenges stacked against them and the parents of our alphabet kids have to do a lot of education, even among health care professionals. Meltdowns due to overload, cognitive inability or too much stimulation can appear like tantrums, and are often judged to be poor parenting. When our daughter's behaviour first started to manifest when she was around 5, the family doctor suggested I take parenting classes. Now I don't pretend to be a perfect parent, but I could take parenting classes infinitum and it isn't going to stop an SPD induced meltdown from happening, no matter how many sticker charts and removal of privileges and negotiated solutions I employ. If my child doesn't have the executive functioning to allow her to process cause-effect and action-consequence, no chart in the world is going to change that.

We just had a couple of letters change with our daughter, but it needs yet another assessment to confirm it. Same kid, same behaviours, same challenges, same strengths, same parents, same struggle...but if the letters change, more professionals-doctors, teachers etc will have "ah-ha" moments. And that's the most frustrating part-labels don't define our kids, but they sure can smooth the path for some resources, tolerance and general slack-cutting that lessens anxiety all around.

And that causes many of us to use other letters of the alphabet that start with WT...

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