Our additional needs journey

This Blog was created to share creativity in the form of my Stampin’ Up!® business, creations, classes and a sprinkling of life here with the Green family, but, sometimes the creativity ends up on the back-burner when life happens and as always Family needs to come first. I’m so grateful for my crafting business, being an independent demonstrator with Stampin’ Up!® has enabled me to take time out when I need and work around the ups and downs.

Our daughter was born in September 2006 and has experienced sensory difficulties from a young age, starting with not wanting to wear socks or shoes and experiencing trouble sleeping. As she grew older the issues became more varied with a very narrow restrictive diet and many clothing issues, causing her huge distress culminating in very strong emotional reactions and meltdowns.

At this stage a mainstream class of perhaps 30 children in school seemed more than a bit a concerning so we chose a school with small classes, as we could see that she found very busy, noisy environments difficult even though she was social and liked to join in with her peers, she still came home exhausted and would have emotional outbursts at the drop of a hat. Our GP was quick to make a referral and we got to see a Paediatrician in 2012 he was great but was retiring imminently and so we were transferred to the care of a new Paediatric Doctor and our daughter was referred in 2013 for an Occupational Therapist appointment and a report followed diagnosing Sensory Processing Disorder (SPD) and we were presented with an A4 sheet of suggestions to minimise symptoms, such as massage to desensitise and wearing seamless underwear or weighted items and blankets, none of which really helped. It was however agreed that she would be added to the list of children to be assessed for Autism. The advice was that this could prove to be a very long wait. Things continued to get harder for her and the issues grew, affecting everyday life.

Although reports were sent to school from the Community Health Team, we approached the school principal in 2014 with our concerns about her difficulties, to find that these were met with some disbelief from both her and our daughter’s teacher. I hear from other parents that this is not unusual, and that educators can totally miss the signs that children are struggling. The signs are there but staff are often untrained how to spot when a child is masking their difficulties and only the most blatant difficulties that some children demonstrate ring the alarm bells. Typically boys experiencing difficulties display their problems more, but not always – there are often no typicals.

The suggestion from the principal was to seek a consult with a speech and language therapist that the school had a working relationship with. This resulted in a report outlining some challenges and differences in the following areas: Weaknesses in non-verbal communication (gestures and eye contact), sensory processing difficulties, rigid and inflexible thought patterns, difficulties understanding social relationships and maintaining friendships and a preference for routine and predictability.

All of these again pointed to an Autism Spectrum profile, and this was finally confirmed when she finally completed the ADOS assessment process the following Summer in 2015. Now I know there will be people that don’t agree with the thought of labelling children, however who is that really about? As parents are we fearing the reactions from others or is it the judgement that we are scared of, does it reflect on us that our children might be viewed as imperfect?? I totally disagree with those negative and fearful attitudes to a diagnosis, after all my daughter has Autism, whether I choose to ackowledge this or not makes no difference to this fact. What, however makes a difference for her personal acceptance and that of others is the knowledge of the fact that Autism is a neurodiverse condition that will mean she processes things in a different way sometimes and that she will perhaps need to be supported to understand and be understood.

I embrace the wonderful personality that she has developed from this different form of thinking. There are many positive points about being an out of the box thinker and having a fantastic sense of detail. The world is a richer place because we are not all the same.

If our story has got you thinking or you have any questions or would like to ask about resources and support that we have found useful on our journey, then please get in touch.

Bel x