The biggest problem in having relationships with people with (severe, complex) neurological disorders isn’t necessarily the impulsivity, the rages, the distractibility, the tactlessness, the poor co-ordination, the sensory issues… Sure, these are tough on parents, partners, colleagues, and friends, often in a big way. However, as a person with ADHD, Tourette’s Syndrome, Learning Disabilities, and Co-ordination challenge (some individuals think I have Asperger’s), I find my biggest challenge, and that of my friends and colleagues in dealing with me, is INCONSISTENCY. I watch our camp staff dealing with this confusing trait summer after summer.
Here are some guidelines for dealing with the inconsistency that is inherent in neurological disorders.
1) QTIP – Quit taking it personally. It can’t be helped.
2) Always think ahead and have alternate plans if one activity or situation isn’t working
3) Teach your children self-advocacy skills (asking for a break to exercise or be alone, asking for a quiet place to work, asking for a short extension, explaining one’s own inconsistency)
4) Support your children to work hard when they can, and to use their hyperfocusing ability to do extra work when possible, and never to use their challenges as an excuse (explanation yes; excuse no!)
5) Be flexible in your expectations – a “bad neurology day” needs alternate plans, as much as a storm requires you to cancel an outdoor picnic and choose a more workable activity
6) Along with your child, explain this consistency challenge to school teachers, sports coaches, guide/scout leaders, religious school teachers, etc, and problem solve safe and realistic alternative plans.
The challenges that come with invisible disorders are often different than those of more noticeable disabilities. The most difficult and complex of these is often inconsistency. Hopefully these guidelines will help you be understanding and supportive of your child, friend, partner, or colleague.
Many parents/caregivers have the gargantuan task of supporting an inconsistent child while they themselves have challenges that make them inconsistent! This is SO hard. If this is you, please put plans in place to be able to put your kid first most of the time.