Meet Holly, she is mum to four boys, three of whom have a diagnosis of autism. In this blog she gives us an insight into life with three children who have additional needs. From sadness and fear at diagnosis through to becoming their biggest cheerleader.
Autism for me, mum of four boys, three with autism, feels like every emotion, every thought, every action all amplified. It makes my heart burst and break, sometimes all at once! Autism has shown me and taught me love, passion, fight and resilience on a whole new level.
Meet my boys: –
Blake age 14, diagnosed with autism at 3.
Manny age 7, diagnosed with autism and a chromosome alteration at 2 and a half and ADHD at 6.
Jax age 6, diagnosed with autism at 2 and a half and epilepsy at 4.
RECEIVING A DIAGNOSIS
Initially, I only saw darkness, sadness and fear for the future, which is normal. I didn’t know it then, but I was grieving for the child(ren) I thought I would have. I was overwhelmed. The guilt I feel now for having had such negative feelings is something I’m still trying to find peace with. I can’t erase those memories, but they do help me see how far we have come.
I often describe the diagnosis journey as a rollercoaster in the dark. You won’t see the twists and the turns; you will be mentally and physically discombobulated. Be mindful that it’s OK to NOT enjoy the ride and remember that the ride doesn’t last forever. It slows down, people get off and eventually you will too. Since every child is different, each new experience will differ, but you get better at identifying issues, adapting and resolving them!
Resources I have found helpful include: the National Autistic Society (NAS) who helped me to understand autism, especially in the early days; Action for Epilepsy have epilepsy training online which is good; the Family Fund have supported us with a grant towards garden equipment and a holiday voucher in the past.
PERSISTANCE PAYS
PECS & THE PYRAMID APPROACH TO EDUCATION
PECS has been life changing for my boys in that it has given them a voice they wouldn’t have otherwise had. PECS helps them be able to communicate their wants, needs and opinions.
I completed the PECS Level 1 training back in 2013 and attended the Teaching Critical Communication Skills workshop in 2014. Each of the boys, including Jax now, has their own individual PECS Communication Book. It is important every PECS user has their own individual book, as it is their voice. In addition to the Communication Books, Blake uses a travel schedule to support his understanding of the day, enabling him to transition between places or activities and access the world. The travel schedule has reduced Blake’s anxiety and challenging behaviours which has supported his independence. Transition is something all my boys find difficult, so a schedule is something I am keen to introduce to Manny and Jax when they are ready.
Working For cards are another resource I find particularly helpful with Manny. Manny can find waiting, sitting, and attending challenging. The Working For cards have helped enormously as have the Help, Wait and Break cards.
GOALS
Goals are great as they give us all focus and skill acquisition, but we don’t worry if they aren’t achieved immediately. Solid learning that’s consistent is always best.
EQUALITY
A lot of the time Jax needs me more than the others, that’s OK. Sometimes Blake needs longer on his iPad or needs to hold my hand, that’s OK. At times Ellis needs to have an extra treat or a sneaky piece of chocolate, that’s OK. Manny often needs activities, which take up my attention, that’s also OK.
FIND YOUR ROAR!
If I had to give any advice to other parent, carers or adults supporting children like mine it would be to see the whole child, see them, feel them, and hear them. PECS can help you to see a child in more ways than one!
Autism is not the end, it’s a different kind of new. Your autistic child, is still your child and you are their biggest advocate. Find your ROAR and keep making people hear you and your child. Tough times don’t last, but tough people do!
by Holly Steer
© Pyramid Educational Consultants 2023