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My ASD Princess

A family helping a girl explore her world through the lens of autism

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comorbidity

We Continue to Fight

To say the last 8 weeks has taken a toll would be a huge understatement. As written in my last blog, https://myasdprincess.com/2018/06/02/under-diagnosis-with-half-the-answers/, we are for the first time trying to understand the complexities of the comorbidity of our princesses mental health diagnosis and autism. To add to the complexities it seems that finding a specialist that understands both mental health and autism are a rare breed and one that we haven’t found as yet. So once again we are found educating the professionals, explaining her normal in order to develop a care plan that is complementary and not a hindrance. Since my last update, Jenna has spent 2.5 weeks in a secure ward battling with depression and in urgent need of a medication review.

We are week 5 post-discharge, still experimenting with medication changes, and still with a child that is coming to terms with what seems like her new ‘normal’ that she and we weren’t ready for.

One recommendation was to seek out a family therapist, an idea that if we all as a family could understand her normal and work through strategies together we could once again create a space at home that was safe for her. You would think to find a local therapist in a city of 120,000 people would have been an easy task. 8 weeks of phone calls, recommendations, and referrals have led to zero appointments at this stage. We have a parents therapy session next week, and with any luck, this will be a starting point for us all to verbally address the stress and complexities that is our everyday. With over 30 or so calls already made, and numerous explanations of our unique family dynamic all so-called specialists declined the sessions stating it’s not an area they specialise in. So in desperation, I called a counsellor, not a psychologist, although we still got the same story, unskilled, try someone else, are you sure you want me etc. we have an appointment. Progress, but a situation that in a time of NDIS funding, supposed community understanding and acceptance, we still see that support is still unattainable for the most in need.

The struggle I’ve spoken about often is our response or attitude towards behaviour. With the addition of a psycho-social diagnosis, we have again needed to review behaviour and our response to it. Trying to understand when to respond, how to respond and also the understanding of the ’WHY’ is a taxing and raw reality of our everyday. With the hospital staff stating we need to be firm, consistent and be reactive to inappropriate behaviour and our autism training focusing on reducing sensory overload etc. We are forced into a world with a dichotomy that is hard to fathom and even harder to build a plan that will be successful. Something that I have been an expert so to speak in my profession, has proved to be the most extraordinary battle at home. Our response to behaviour has become the focus of the majority of the day. Whether this is a response to a sensory issue, anxiety, being unwell, poor behaviour, a direct response to others or a response to not being in control, we walk on eggshells constantly risk assessing the situation and looking for ways that could minimise harm.

We definitely don’t have the answers and entering the unknown is really scary, I can only begin to fathom how it must feel for our princess. Living at a constant level of high stress is unhelpful for all parties, but this seems to be the families go to, thus adding to the complexities that we call our everyday. We are exhausted, in a town where we haven’t build natural supports, isolated and perpetually repeating scenarios that I wouldn’t wish on anyone.

But as in all my writing, and public posts, we continue to look for glimpses of hope, a time where there is a connection, times of learning and times that create more possibilities rather than obstacles.

In a time that we all were broken our princess wrote a beautiful post about her recent hospital stay. It’s raw, confronting, but it shows a girl that refuses to give up, and a girl that a screaming out to be seen, accepted and part of a community.

I’m so happy and blessed that I finally got discharged from hospital after 2 weeks almost 2 weeks and a half. I’m starting to feel a bit better from when I admitted to hospital. But all I need to do is one day at a time and I have to remember I have friends and family who love me, care for me and look out for me. I am really blessed that I’m out of hospital hopefully for good but I never know. Thank you so much to everyone who was keeping me in their prays and thoughts it means a lot to me, reminded me that people care and love me and it helped me guide through the tuff times and pain I was going through. It felt like I belonged in this world for the first time in a while and I knew people loved me for who I am. Thank you all so much and I really hope I’m not going back to the hospital because I really hate it there. It was like some people at the hospital thought I was the naughty one and like Was invisible which made me feel uncomfortable, worthless and terrible about myself. But after all the therapy/sessions I did and talking to people even though I felt uncomfortable to talk to them I still did so I could feel better about myself and not wanting to be Suicidal. But I’m still suffering from anxiety and depression which almost always makes me Suicidal. But I try to look on the bright side and say to myself “ I have friends and family who love and care for me .what would they feel when I die or see me get hurt they would be miserable and upset so try to think of what they would feel if I did that”I felt a bit better about myself and I discovered I wasn’t worthless and other stuff. So always remember that if u feel worthless or useless or some other stuff. Remember u are in this world for a reason and your mind or people telling u that .that is not true and always try your hardest to be positive and grateful about yourself or u will keep having that awful thought. thank you so much to everyone who was thinking about me and I am most grateful for the doctors, nurses and my family for everything. Written by Jenna Hope

In the past positivity, brute strength and determination has got us through the toughest of days. So in that spirit, we have refused to hide our princess and continue that methodology of exploration and exposure. As a person this a stupidity and a hiding to nowhere, but as a Dad this is a necessity, it is the hope that little by little the learnings pay off. It’s that raw and extremely taxing determination that I believe will reap tenfold in the future, but the present is hard, really hard.

We are grateful for the support of the NDIS, although still waiting for an outcome of a ‘change in conditions’ review (week 13 and still waiting ) we have been funded for therapy supports and capacity building. Although not how we would prefer to spend funds our princess get between 10-20hours of support per week to respond to her inability to attend school, and honestly enable Mum & Dad to work. With a carer at home (supporting Jenna 1:1), we get 0-2 text or phone calls from Jenna, without a carer we get 20-40 phone calls/text messages. This response to her need for 1:1 supports and inability to self-regulate or actively engage in activities has provided a side effect of quietness and rest.

Kathryn has needed to reduce her hours at work, and our older children and some family members have provided much-needed respite to enable us to continue to work and commitments on extremely short notice.

I’m not a fan of our new normal and to be honest a little pissed at what life is currently. It’s hard, emotionally draining, and gut-wrenchingly raw and focused nearly exclusively on one of our four children. That being said, it’s what we have been dealt, and amongst the crazy, stress and suite of therapy appointments etc. we have glimpses of a wonderful spender, and that’s what we focus on.

Only been given half the diagnosis, and half the answers.

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

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