I’ve learned a new word, and I don’t like it, Comorbidity. While I thought this was to mean for our princess that her anxiety, sensory processing and to some extent her ADHD were concomitant with her Autism, that is naturally accompanying. I’ve unfortunately been misinformed and for her underdiagnosed. We now understand that our princess comorbidities are concurrent, which we are finding is far more complicated than we ever imagined. That is her conditions exist simultaneously but independently with another condition. That being that for Jenna anxiety, depression, sensory processing, and ADHD are present with and in the main separately individually present as a stand-alone disability.
This, in turn, brings me to another new word I’ve needed to learn to petition for additional support for her. Psychosocial, A Psychosocial disability is a phrase that describes a disability that can derive from a mental health condition or episode. In simple terms meaning limitations in how a person thinks, feels and interacts with others. Therefore causing them to have barriers or stopping them from fully participating in activities of daily life. Thus meaning that I now need to advocate for supports not only for her autism (supports we are grateful for but currently not meeting her needs) but her psychosocial disability ( that is her anxiety, social phobia, and depression).
Its been a hard few
weeks months, we can’t seem to find the right balance. Always jumping from boredom, school attendance, therapy sessions, doctors appointments, mini breaks with family, time with us, time alone, repeat. We have lost the rhythm that our princess needs to provide her balance and calm. Last week I had a daughter with autism (level 2) this week I have a daughter with a suite of disabilities that are fighting for a front row seat, in her every day. A child that I thought saw the world through the single lens of autism, now viewing life through a multiple lenses mixing anxieties, depression, and social phobias blurring her reality and messing with what we thought was her normal.
So I am hurting because my daughter hurts, but I’m also angry because my daughter hurts. When your daughter has only been giving half the diagnosis, it means we’ve just been treating a symptom, not the cause. Instead of secondary diagnosis, we are now dealing with multiple primary disabilities. I’m saying that the focus has been on autism, how autism affects the day to day, how autism affects school, living in the community, interacting with her siblings, with me. 3.5years of therapy, a psychologist, working on resilience, feelings, expressive language, independence, and school attendance.
Treatment was focused on treating the primary disorder, not the secondary ones; we thought we had time to develop social skills down the track, for now, have a toolkit to ensure you reduce the effects (noise, crowds, routine). We thought to establish a routine, building tools, and equipment to help balance her surroundings was the focus. Only now to be corrected by mental health professionals that we are letting a 13-year-old girl rule us and she doesn’t need these ‘tools’ she needs things to be the same as everyone else, she needs ‘normalization.’ In the effort to keep a calm house, a calm daughter and for her other three siblings to have a somewhat ‘normal’ childhood we worked at soothing our princess and helping her to remain level and calm and focusing on autism-related programs.
After 3.5years of focusing and practicing a theory, we are now starting again, and to be honest we are remarkably lost and outside our comfort zone. The first shift has been the element of risk. Transitioning exceptionally quickly from the promotion of independence to the removal of to keep our princess safe. This focus messes with your head and challenges your every being. Bringing the focus on risk and harm minimization, means for the time being our house is locked down. No sharps, no medication and a rethink of what is stored and easily assessable.
That means for now our focus is on her depression, social phobias, and anxiety. Unfortunately, for now, it also seems that we are in a system that only understands elements of her disability, forcing us to explore multiple treatments and therapy to ensure all needs are being met.
What we are sure of over the past 3.5years is our princess is a fighter and determined to leave her mark well and truly in this world. Our job as parents is to enable her to dream, help her to see there is a purpose for her and equip her with the tools she needs to succeed. Most of all, at the moment we need to show her inexcusable, unashamedly and boundless love
June 5, 2018 at 1:11 am
Life seems tough when the cards that fall are defined by the “professionals”.
It can be hard to make sense of what has happened without them.
The labels are signposts to supports, not sentences of despair.
Character is built by these experiences, families survive with the love that pervades and surrounds them.
Even when love seems far away, in each conversation it is there, within each of you, waiting and hoping.
Define all your lives yourselves, each of you, as the beacons of “Hope” to one another in the family that will endure.
Never forget the “BIO” – Check out the endocrine (hormonal and lymphatic) system too. RBWH has the best in the world.
Growing up can mean lots of things are happening at once including brain neuro-developmental changes caused by organic triggers.