I feel there is a need to shed some light on the actual reality of being a parent of a special needs child as this Government (the one I voted in) has already shown that they don’t quite understand the life we are living and the true challenges we face daily. While I can’t speak directly on behalf of other parents I am able to share what is posted on the Facebook NZ autism page. Parents reaching such a point in life that they are stating they no longer want their autistic child, parents being attacked by their children/teens and police needing to be involved, children unable to leave their homes and even bedrooms, homes, TVs, iPads damaged due to dysregulated behaviours, parents getting limited sleep caused by autistic melatonin levels, children with sensory issues unable to wear clothes, limiting foods to a dangerous level, and unable to cope in everyday environments due to sensory issues and being overwhelmed. The list honestly goes on but without living it, or being close to someone who is – it is tricky to understand what life is truly like and why the idea of “just get a carer in” will not work for most families.
My husband and I have an almost 6-year-old daughter who has spent most of her life nonverbal (until a month ago: now able to say a few words with support). Abbie had no words, communicating eventually through dragging us somewhere, without the ability to point to things in order to help us. Meltdowns were daily, for hours on end. My world shattered; many moments when I openly said, “I can’t do this anymore.” My husband and I made the decision for me to remain at home, while I took Abbie to daycare in the mornings and then private therapy (kindly financially covered by my parents) in the afternoon. Our hopes of two incomes a distant memory.
While I have learnt to try and see the shining rainbow moments in this journey, and I obviously absolutely LOVE my daughter, our life has been full of dark moments impacting my own mental health, which used to be quite stable, our marriage has been challenged, and life as we once imagined it – gone. Our life has consisted of lots of heightened behaviours, screaming, meltdowns and us walking on eggshells guessing the needs and wants of our nonverbal daughter.
Poo smearing was common and still happens, saliva spread everywhere in order to self regulate, stimming for three hours during the night most nights, toys and equipment with holes and bits chewed off from biting, and clothes needing replacing after a day or two after having created holes – again due to her sensory needs. Abbie has not coped with being out so we have been housebound most weekends, if you remember lockdown – it’s like that except you don’t get the walks. So for us having a safe space at home where Abbie’s needs are met is what is important and offers respite for me. Abbie spends hours using the equipment we have claimed using carer support.
The problem with the current carer support’s respite rules is that they are not beneficial to many of us. While I understand your need to cut the funding in areas that you can, please don’t cut it from disabled families. Our life is challenging enough, with many having to leave their jobs, and some having no choice but to homeschool. We need the respite and there is no point in having it there if we can’t use it.
Our children are often rigid in daily life, do not deal well with change, often won’t allow people in their space (especially new people), and some have the inability to play. As the parents we know our child best, so surely it should be up to us how we want to ensure we get the respite?
That extra financial help (I get just under $2K a year) has made the world of difference for us, and every item (trampoline, swings, iPads) has given Abbie such a sense of calm and kept her busy. Although these may seem like ‘luxury’ items to you, these are looked upon more as essentials in our daily life. We already have added everyday costs due to having a child with a disability so being able to purchase these ourselves would be a stretch. Abbie has been in nappies until recently and now is in night time nappies. She still poos in her undies so we buy undies regularly. Holes are regularly found in clothes and biting toys and things like inflatable bouncing equipment, which in turn need to be replaced. She has a limited diet only eating specific food items which are costly and she has separate dinners (same dinner every night). She won’t use a duvet at night so we have the heating on all night – another expense. All of these things are additional costs to the ‘everyday family’ and make life tricky when you are on one income.
What I am here to recommend is that you tweak the process so that the ‘lotto tickets and booze’ situations don’t happen and so we don’t get punished for someone else’s incompetence in their own job. I suggest that after diagnosis, someone has a home visit to review the child and talk to the parents. A set amount of money is allocated annually and it is up to the parent if they choose to spend it on a carer or purchasing items for respite. If situations change at home and a request for additional funds is required, another home visit is organised and a decision made if more money is appropriate. This is such a win for all. The government can ensure funding doesn’t run out, time isn’t wasted going through forms deciding what is acceptable, or parents sending back incorrectly filled out forms, and more importantly parents don’t need to waste their time on these confusing forms, while also feeling a little intrusive about having to declare to a stranger who doesn’t know my child, why what I am buying would be suitable. Let me choose what gives me respite and what my child has in her home to give me that respite. The impact of your current decisions not only impacts us as parents, as humans, but also in turn our disabled child. She deserves better.
We are Abbie’s voice while she doesn’t have one. Please don’t be the ones to take from the disabled.
I look forward to hearing back with an explanation as to the changes, without sadly accusing parents of wasting it on lotto tickets and booze.