Autism. A word used to describe a common disability. A word which comes along with false sympathy, pity and comments of “how do you cope” and “I bet life is hard!”. Damn straight its hard, being a mummy is the single most challenging thing a woman can become. My reality is I have two amazing little boys whom I owe my life to.
Our journey began in 2012 when we were blessed with the tiny bundle that is Freddie. Quickly we fell into a routine. “Routine makes it all easier!”
Little did I know these routines would be forever stuck with us and deviation is the cause for a full on emotional break down. Freddie developed well, barring his speech took a while to be comprehensible. Everything was going well. Fast forward twenty months and the miracle that is Harry had arrived. A content quiet boy.
Freddie started pre-school at two, my alarm bells were ringing that there was something not quite right. That maybe his outbursts weren’t just a typical sign of defiance and the terrible two’s. I then started to notice smaller things, walking around the same area picking up flowers on the daily visit to his pre-school along with other little rituals and his genuine struggle with new occurrences or experiences. Emotions not being read how most people would recognise them or displayed effectively. Head butts done on purpose onto hard objects, starting with doors until eventually leading to harming himself by banging his head onto concrete floors. This then changed to biting his own wrists. Surely this wasn’t normal? A review with his key workers expressed that they shared my concerns. Two years later after endless assessments and paediatric appointments we had a diagnosis. Autism Spectrum Disorder.
During Freddie’s assessments, Harry’s behaviour concerned me. Super late walker, rocking and hand flapping, a disdain to anything wet to the point his gag reflex reacts. Most importantly, at 2 years old, zero speech. We’re still in the process of having the letters ASD added onto his medical records and since then other habits have developed.
Our day generally starts rigidly, usually by the happy cooing of Harry in a song like manner, it goes on to them having the same foods daily and their dose of vitamins to help them not be deficient because they are so self-restrictive diet wise. A trip to nursery and preschool after of course the dreaded preparation for going out using a visual time table to show them what’s coming. We don’t do surprises! Freddie spends his day with the one or two friends that he has managed to muddle his way into making – social skills are somewhat of an issue for him! Harry usually spends his with his one to one staff member rocking and flapping, separated from others paying little interest into what is going on around him. Makaton, PECS and weekly portage visits seem to take over our lives!
Next up: bedtime!
Sleep is not even a thing I vaguely remember! We have a very strict bedtime routine: dinner, play, bath, The Gruffalo usually read twice and bed. Most nights Harry drops eventually on the floor where he’s made his own little camp, usually just after smearing a nice shitty nappy everywhere for me! Cue the second bath of the night, whilst Freddie rambles away running around attempting to tip furniture. Eventually they drop and I’m drained ready to slump into bed all to do the same things, at the same time the next day!
My main concerns are how Freddie hurts himself. Every time he bites his tiny wrist in frustration or anger or sadness he leaves trace. A small bruise. As a mummy, your child being hurt is not something that you want to see. I wish I could somehow help him to display what he’s needing to without the self-punishment.
Harry’s worries are separate. I worry that this little boy who is beautiful, but completely oblivious to the world around him will be swallowed up and forgotten.Will either of them find that special someone and move out and ultimately grow up. What will happen to them when I’m gone. Who will take care of them?
I so badly want to hear those three insignificant words which others take for granted, come from Harry’s mouth; “I love you.”
Yes, they’re a handful, yes, my life is hard; would I change it? Not even for a second! Who wants to be normal anyway?
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