Walk into any bookshop and there are shelves of self-help books, absolutely loads. Books on increasing self-confidence, pregnancy, diet, positivity…the list would seem to be endless.
Until you become part of a new “club”, one that you weren’t necessarily aware when your child was newborn that you’d be “joining”, due to the fact it’s an invisable disabilty. One that has no requirements for race, gender, social standing or religion to join. One that you may “join” suddenly at first meeting with diagnosing professionals or one that may take years of appointments, letters and reports.
Eitherway, you are told a diagnosis, a life-long diagnosis, handed some leaflets (and some tissues) and sent on your way. You and your child who now has a “label”, they’re the same child they were before the diagnosis meeting but the way Society will now perceive your child has changed.
The strange thing about this new-found parenting/carers “club” is that you aren’t automatically guided towards fellow members (other SN parents). Without guidance it can be an isolating time, without advice from others who empathise, every outing/playground experience can chip away at this new, improved, tough outer skin you resolve to now wear.
There is help and advance out there for SN parents, it’s a question of knowing where to look.
I asked fellow SN parents/carers on Twitter what their one top parenting tip would be and the results are below.
There is a great deal of empathy and understanding, with the greatest comfort to be gained that someone, somewhere knows what you have gone through, because they have too. Albeit a day/week/month/years ago. The realisation that you are not alone is a powerful one.
So, how does a parent of a newly-diagnosed child/adult find this empathy/this opportunity to share experiences?
Social media was my starting point. Something made me reach out on twitter one day, using the autism hashtag (#autism or #autismparent). I have connected with fellow SN parents from around the globe, the majority of whom I am never likely to meet but we share a common goal – that of promoting not just autism awareness but also autism acceptance. It’s a big ask, people base so much on their first impressions and when faced with a child melting-down in a supermarket, their initial perception is bound to be one of “naughty child, bad parenting”. It’s about going beyond that initial judgement and taking the time to understand why the child may be melting-down.
Another option, as suggested by @emzamy, is to “try and find a support group with parents in similar situations – it can be lonely”. This is very true, face-to-face support and sharing of experiences is instantaneous, there is no delay waiting for a social media reply. Support group information in a particular area can normally be found via Google, and the local autistic society may have details.
Local/National societies are another great way to obtain information and assistance with the numerous forms that become part of SN parenting. If there is not a specific course being run on how to fill in a DLA form – for example – there is normally helpful information on the website/via a volunteer.
Dealing with bureaucracy and endless phone calls/appointment making and form-filling can be emotionally exhausting. It’s important to realise that:
“it’s a marathon, not a sprint”
…from Jane @everhopeful1000.
Anita @BennettAnita also recommends:
“Cutting yourself some slack, emotionally and literally. You have different priorities in life now, make time for yourself”.
The 46-or-so page DLA form will still be there tomorrow, take your time with it, don’t force yourself into completing it all at once, aim for 2/3 questions per day, taking the time to complete it as completely as you can, focussing on the positive and the negatives.
At the same time, recognise that you are the one who knows your child/young adult best. Not some “professional” who has seen them for one hour in a different setting. We had a dreadfully overbearing experience with an OT who was not prepared to take on any input from us as parents and in the end I had to formally write and request that we “agree to differ”. The stress of every meeting far out weighed any potential benefits (there weren’t any). So, as Charlotte @clkh_ says “there are no “experts”, trust yourself and your instincts”, echoed by Emma @eamesemma and Jen @mummybear733.
Mark @BennoMarkJ also advised:
“Never give up – it can seem like a hard slog but every so often you may see a small sign of progress which makes your day”.
This is SO true, we were given no academic expectations for D and the first time she wrote her name was truly amazing. I remember hugging her TA and then bursting into joyful tears because we just didn’t know what to expect.
Whilst it’s important to remember to take things one day at a time and
“Don’t think too far ahead in your child’s life”
From Rebekah @RebekahJ88 – autistic children crave routine and need to know what is happening, how and when. Visual prompts are very useful to explain the order of events. T is high-functioning but needs to know the order in which his day will be happening, it helps him process all the infornation and he is prepared (hopefullly) for eventualities.
“Planning ahead, to avoid triggers”
….as recommended by Mark @MRMweb is key. This can be as simple as avoiding a supermarket as its busiest time as your child is unable to cope with a busy environment, the use of a social story when discussing a hospital appointment or ensuring that the usual meals, snacks and anxiety soothers are taken on an outing.
I don’t think I have analysed myself as much, filled in so many forms, had conversations that have either made me cry tears of joy or frustrations since I became an SN parent to T and D, but it’s turned me from a quite-selfish career woman to someone determined to make society see everyone with an invisible disability for who they are, not what their label is. It’s a privilege.
Thanks for reading and thanks to the fellow SN parents mentioned above for their input.
Do any of you have any more tips to add to this at all? Please feel free to share in the comments below.
Thanks so much to, Autism Mumma for the lovely guest post today. Do read her blog, its an inspirational story of her journey with her daughter, D, who was diagnosed with autism before she was five years old. She is passionate about raising awareness of autism; as she herself calls it the “invisible disability.”