Thursday, January 8, 2009

Autism and parent dilemmas

Recently, I read a newspaper article/letter, written by a mother who appeared to be feeling desperate about the amount of funding (or seeming lack of) available to her family, from the government, in regards to helping provide services such as ABA therapy ("...the nearest thing to a cure for autism..." she wrote). These and other services, e.g. speech therapy, psychological and so on, are able to be accessed with this funding as well.

Another thing she mentioned was that the autistic child "is a drain on the family..." (and finances).

Apart from understanding that the mother and (newly diagnosed) daughter are 'beginning' their journey with autism and that she may be grappling with the diagnosis and what it all means for the family as a whole, I wondered what information she has been provided with in regards to understanding autism; advocating for her daughter and self; the holistic perspective of her daugther's medical, physical, psychological, cognitive etc. needs and so on.

It appeared to me that what she is currently relying on may be limited information regarding the 'steps' available for assisting her daughter. I wonder if she has been offered information or advice regarding learning from or researching the current information available from the many members of the community of autism; mainly those who live with (are autistic) and are specialists in the field of autism?
I wonder if parents are sometimes adequately provided, initially, with important information surrounding the potential of e.g., exposure anxiety or underlying health concerns playing a part in some behavioural issues; the possibility of one or various sensory difficulties affecting a child's enjoyment of life etc.. The list of possible 'sensitivities' or difficulties can seem quite long.
Of course you don't want to overwhelm parents with an exhaustive list of possible areas of note, but if armed with information, most of which may not pertain to their respective child, at least they can be 'aware' of these potentials, note when some are perhaps arising and perhaps have a basic understanding of how to work with these issues and who to enlist to help them with 'their' ethical management.

I felt for this mother and her apparent desperation to find 'answers', "cures" (she wrote) and assistance for her family.
I felt that she was beginning her journey in a land of the unknown. A land where there was a level of fear of the unknown, a search for 'why?', 'how?', 'when?' and 'what now?' And wondered if she was perhaps asking these questions, was she receiving qualitative answers.

The financial commitment to a particular therapy she was finding also overwhelming and concerning. I felt myself asking the question of 'who told her that she needed to fork out massive amounts of money (once the funding had been exhausted) to 'treat' her daughter?' Is this the only way to provide quality of life for her daughter and self (+family)? Is it proven to be the best scenario? Should a select and varied set of interventions (holistic approach) be implemented to achieve quality of life for the child (and family)? In other words, the finances are not exhausted on one particular area, but best utilized for each issue/problem/difficulty as it may present?
By holistic approach, I mean services/assistance/recognising such as, but not exclusively;
e.g. * speech/occupational/physical therapies
* diagnosing potential digestive/metabolic etc. disturbances
* possible allergies
* cognitive processing difficulties/sensory processing
* physical/motor/coordination
* other comorbid conditions
* mineral and other element deficiencies
* emotional/anxiety/interactional difficulties
* family concerns/upsets/behaviours/disposition
* counselling (for family members, and child if old enough)
* environmental (home, school, inside, outside, lights, noise, sound, smell, texture, taste, colours, textures, people, animals etc...) triggers for behaviour or emotional reactions......and so on.
To discover and work with some of the above-mentioned 'things', we may need to employ specialists to help manage them. Therefore, funds may need to be spread across various forms of assistance.
Once a complete (as much as is possible) picture of our child's needs is ascertained, a holistic management method can be employed. (Many of the methods used to assist us and our children cost virtually nothing once we have 'skilled' up ourselves).
I felt I wanted to reach through her letter to her 'pen', hold her hand and help her take a few deep breaths for a moment.
I wanted to let her know that, yes, there is a humungus amount of 'information' on the net, in books, from the mouths of many. It can be overwhelming for a parent new to an autism diagnosis for their loved one.I wanted to say to her to start with the necessary information about her daughter; gather what she needs for her own wellbeing; observer her own daughter's individual needs, desires, abilities and so on, and work from there.

Remove pages from your cheque book only when necessary. There may be no need to mortgage the house. Are there other simple and effective ways to help remedy health (and other) issues which may be presenting with your child on the spectrum?

Listen to the stories from people who are themselves on the spectrum to help gain life's perspective from the 'inside - looking out'.

Some parents unfortunately begin their 'journey' with their child's diagnosis without acceptance. Denying the reality of the situation. Getting 'lost' in 'information. Losing sight of the personhood of the child with the diagnosis.

For some parents this may be temporary. For others, they work through these feelings with success over time. Some parents are relieved to have their suspicions confirmed and acceptance can be immediate. Everyone is different.

What I hope to achieve with blogs like this is to help parents understand the real 'story' of autism; referring them to websites and blogs of people on the spectrum; help them not be swept up in the cylcone of infromation OR misinformation about autism; help them to be 'grounded' - at a grass roots level of living WITH their autistic child and not against them. Share a quality life with their children and not inflict some uneccessary and sometimes inhumane 'treatments' for autism on them.

I hope to encourage parents to not 'blindly' accept all they are told in regards to their child, but to calmly question the validity, humanity, necessity, justification, safety, ethics, real value, purpose, proof of effectiveness and so on of various 'things' they are 'learning of' or being 'told to do' or 'what is best' for their child. From the information we, as parents, are given, we need to 'go with' the best.

Our children deserve the best we can give them. They depend on us.
Ps. Let children be children too.
Just as we need time to reflect, create, chill, be alone, enjoy being 'self', 'do' when we want to 'do', sleep when we want to sleep, laugh when we want to, cry when we want to, get frustrated and want to be understood, to be listened to when we want to be heard, to be held when we need comfort, to express ourselves and so do our beautiful children.

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