I’ll never forget the day when Ryan was 3.5 years old and had a speech therapy appointment at the local hospital. These appointments were always tiring – 50 minutes being stuck in a small hospital room where Ryan sat on the floor “playing” with toys whilst I repeated my pregnancy story and Ryan’s (lack of) skills and life history. It was always the same, each and every time, and very rarely did we walk away with any “therapy” being actually done.
We always walked away with homework though – and things to try – things to weave in throughout the day. It was really frustrating. Who exactly was supposed to “weave” these activities throughout the day? Me? My husband? My Mum? We all worked full time. Actually the nursery or school are supposed to carry out these activities but they all have their own agenda (which suits the majority and not the neurodiverse kids) – but importantly do they even really have time to practice each and every technique recommended? Without a 1:1 (and given the high staff-to-child ratio) it would be impossible, and although Ryan was fortunate to have a 1:1 at the time, the setting didn’t quite take instructions from me, and I’m certain the “1:1” was simply used as an extra body in the class and not dedicated to Ryan’s learning!
I hate the way therapists always give long lists of things to try out throughout the day but unless the child has someone dedicated to work with them (be it at home or school) – nothing will get done. There’s an expectation that as parents you have to be the ones to carry out all the activities and tasks set out in the reports. And if you’re working full time and the setting isn’t following the guidance – then it actually ends up being your problem. Unless there’s an EHCP that dictates these activities/tasks then it’s unlikely that they’ll ever get carried out. So as parents we end up trying to find ways to get these activities and tasks – that will better our children – carried out to the extent that we can – and in the end I had to manage this by hiring someone to go and work with Ryan at his setting as a 1:1 paid for by myself! If Ryan’s only way of progressing was to carry out all the tasks suggested by the professionals – then no way would I let them slide or not be done just because I had to work and the setting wasn’t stepping up.
So back to that day in June – it was hot and humid in the small hospital room, and after repeating our life histories, the speech therapist turned around and bluntly said to me “I think you need to accept the fact that Ryan may never speak at all”. She continued and essentially told me to cut my losses short (i.e. don’t push for more sessions) and that there wasn’t much more she/her team could do for Ryan – and that was that!
I walked away in a daze. Ryan was only 3 and this lady had written him off? How could she do that? He was 3 and had his whole life ahead of him! How could she decide that he wouldn’t be able to achieve this goal and/or any others in his life? She’d never met him before, she didn’t know him, she didn’t even spend any time with him during the 50 minute session! So who was she to make these bold and soul-crushing decisions for MY child?! What annoyed me even more was the fact that she was pregnant herself – and as a soon-to-be mother how could she simply ask another mother to give up efforts and hope for their child?!
As much as her words angered me, they triggered feelings that I didn’t have before and made me absolutely determined to prove her wrong. I wasn’t going to let the rest of Ryan’s life be determined by this speech therapist. I was going to get him all the support he needed and deserved. I wasn’t going to stop trying, no way! So that was the day my thinking changed. From that very moment I pledged to myself and to Ryan that I would do everything in my power to not allow people (professionals, friends, family, society) hinder and halt the growth, development and progress of my child. Nor would I let anyone stop me from TRYING.
So in a nutshell I guess my comments are: shame on you at the speech therapist who wrote off a child so quickly at the age of 3, but also (in a bittersweet way) – thank you (and screw you) for your harsh words as it essentially sent me off on the journey I currently am on!
Never give up hope guys – I mean it! Our kiddos thrive on our determination and efforts – so please don’t give up hope or faith – and never underestimate how powerful we are as family and friends. We are their voices and we need to leave no stone unturned to help progress them to lead as healthy and as independent lives as they possibly can 💜
Love RJ
PS – this pic below was taken in March 2017 at St. Thomas’ Hospital, London – shortly before Ryan had ABR (Auditory Brainstem Response) under sedation.
