My son, Harry is almost 12 as I write this but I have no idea how I would rate his age in his own world. His language is below 2 years most of the time, his comprehension and processing of the world could be around 3 I’d say but his ability to twist me around his little finger and get exactly what he wants is way beyond his years. I love the very bones of my boy but living with autism is challenging and frustrating at times. Below are just a few reasons why I find it some days harder than others…
Harry is Non-verbal
In at number one is the aspect of Harrys autism that I find the hardest. Technically, he is classed as non-verbal but he does have the odd words he knows and uses well so I prefer to say he’s ‘pre-verbal’ in the hope that the words might be on their way rather than being lost forever. Sadly though, the words he does have such as ‘discuit’ ‘motes’ and ‘dyink’ don’t tell me anything about how he is feeling. I never know what he enjoyed about his day, what he did at playtime or what he ate for lunch. When he’s laughing hysterically to himself I can’t join in his amusement (although I laugh along with him anyway because his chuckle is infectious). When he’s crying, I can’t help his frustration or ease his pain. So much of our life is a guessing game. Charades without any clues. And it’s really hard. I want to chat with him, laugh with him, cry with him. We don’t talk with each other, we talk at each other. I never hear a spontaneous “love you Mum”. I have to say it first and wait for the echo. I am helpless and sometimes, if I am honest, resentful of the condition that robbed my boy of his voice.
Harrys obsession have been wide and varied. They have ranged from specific shops to particular toys (how my boy isn’t sponsored by Vtech I will never know!) He’s also had fascinations with the indents left on people’s legs by their socks – as everyone will tell you who was subjected to a ‘leg inspection’ when they visited us. I’m also pretty sure the poor girl he kegged to feel the indent of her tracksuit bottoms as she swung across the monkey bars is still traumatised!
The last couple of years have seen Harry obsessed with remote controls. It started with watching them on YouTube (yes, people actually record themselves dissecting and using remote controls. Don’t ask me why) Then he started a collection of his own with donations from family and friends. Initially this helped his speech as he copied the phrases that he heard on YouTube, except for the Russian and German ones thankfully, and he even recorded his own little videos of him showing the remotes. But gradually, he has come to expect remotes (or ‘motes’ as he calls them) from everyone who visits. He pounces on my mum the minute she comes around, my handbag gets emptied daily and even the fed ex delivery man isn’t safe. When Harry isn’t presented with the mote he wants, he can scream and hit himself repeatedly. Its distressing to see and must be awful for him! The worry with autism is that a curiosity one day can become a fierce obsession the next which stresses everyone out at best and can be really debilitating at worse!
When I found out I was having twins, one of the things I was most excited about was the close bond that my children would share. The milestones in life they would enjoy together. The trials and tribulations they would face side by side. Yes, this might have been a bit idealistic (I also knew they would fight and fall out) but I was excited to watch the friendship develop between my little people. In reality, Harry has existed in his own bubble for years. Oblivious to Oliver and annoyed by his attempts to play with him. Oliver has been ignored, pushed away and hit, all for wanting a friend in his brother. Of course, none of that is Harrys fault but it’s been hard to explain to a young child why his brother is a stranger to him. Harry is more tolerant of Oliver now and we even get a glimpse some times of an affection he has for him. Although we are a million miles away from where I imagined our lives would be those moments melt my heart and they give me hope that there is more bonding to come.
Worrying about the future
I don’t know if Harry will ever have a job, a girlfriend, a holiday with friends. If I’m honest, right now I can’t see any of those things happening (and the thought of it terrifies me anyway) but Harry has a way of exceeding the expectations of him!
The main reason I bought the house I have now, after my divorce was because of the potential to build on top of my garage so that Harry could have some sort of independent ‘granny flat’ and not have to leave me for monitored accommodation. Again, I don’t know if that will ever happen but I cling to the hope that it’s an option. I can’t imagine my eternal boy being a boy-man in the world without me. And don’t even get me started on what will happen to him when I’m not here anymore. This is my greatest worry. I can’t die. Ever.
On planet autism, sleep is over rated and unnecessary. A twenty-minute powernap for Harry is the equivalent to a four-hour deep sleep for Oliver. My boy is super charged in no time. I, however, am not. For the first few years, the sleep deprivation (NOT to be confused with simply ‘being tired’) made me physically ill more than once. Particularly as I was a school teacher working lots of hours at home too. I have been woken by the music of synchronised vetch toys on my head, constant bouncing on my bed and having body parts pulled and twisted as Harrys latest ‘thing’ to amuse him. Once my marriage broke down and I ended up sharing custody of my boys, my body had some nights of full sleep, rather than the previous three or four hours, to catch up. It saddens me to say that the breakdown of my marriage probably saved my health and sanity.
Now don’t get me wrong, I’m not saying that I find it annoying to ensure my children are safe but at almost 12 years old I can now walk down a street with Oliver at my side and not worry that he will, at any moment, dash into the road to reach a toy he’s seen a child carrying on the other side. I don’t have to hold him by the wrist (a hand hold just isn’t good enough a lot of the time and reins distress Harry). I have had to activate the child locks on my car doors to stop Harry flinging them open at 40mph and I can’t leave him unattended for fear of him cooking his motes at 200 degrees in the oven, melting my make up in the microwave or running a bath of scalding water. He loves asking me to take his motes apart with a butter knife but if I am too long then little Mr Independent has been known to take it upon himself. Harry + a steak knife = disaster. I need eyes up my arse constantly and its exhausting – also amusing at times – but mainly exhausting!
This one is a killer too. Harry needs so much of my time and attention and I know that at times, Oliver feels overlooked. So, during school holidays I always book Harry into the holiday club for a day and spend some time with Oliver. I know that Harry enjoys the staff and activities at the club and that Oliver loves having my undivided attention but I feel incredibly guilty. I feel like I have abandoned Harry in favour of a ‘normal’, autism free life. I would tell anyone else that they were being unfair and irrational, that everyone deserved time just to enjoy a stress-free day but we are always better at talking to others than we are ourselves. ‘Improving self-talk’ is definitely on the to-do list.
The need for constant planning
There is no ‘nipping’ to Sainburys on the way home from the school club. There is no ‘lets just take this detour’ or change of plans last minute. Everything is planned and controlled. Harry needs to know what is happening at least a day in advance and then asks hourly ‘and den?’ meaning ‘what is happening next?’ If I change our plans I have to change my explanation in advance. Heaven help me if plans change suddenly. Then, it’s all about damage limitation and a hope that Harry can cope. Sometimes I just want to wing it for a day. Head out with a picnic one weekend and see where the road takes us. That simply can’t happen. Planning is key to a successful day but again, it can be draining at times.
Being strong when I just want to be mum
I love the sweet smell of my eternal boy beside me. The way he throws his arms around my neck and strokes my face as he grins up at me. I would love to say that I have no problem with him sleeping in bed with me when he tries to sneak in during the night. I know that I have lots of friends whose children still clamber in from time to time for a cuddle. But here’s the crucial difference. If Harry does it now, Harry will still do it when he is 30. He has no idea how old he is or what age appropriate behaviours he should be showing. I don’t want to be lying next to my son when he has stubble and morning wood! *Shudders*
So, I fight to get him back into bed for his own good when sometimes, I really just want to cuddle my boy.
I would understand if, having read all of this, you now believe that I pretty much hate the hand I was dealt and struggle to love the autism in my boy. When I started writing this blog the title was three ways that living with autism is tough. In planning the blog, I got eleven points and even then, I’m sure I missed some off (I would love to hear any reasons you might have too) but I’ve mentioned the ones I find hardest.
Yes, there are moments in some days when I wish Harry was verbal. When I would love him to laugh, play (and even fight) with his brother. Times when I am dying to know what he did at school and why he’s laughing so much that his juice comes back down his nose. Living with autism is tough but it can also be magical. Read more about that next week. If I focus on the hardships and the challenges then that’s all I will see. So, in the moments when I feel a pity party coming on I remind myself of what an amazing boy he is and how much I adore him, of how he simply wouldn’t be my boy if he lost any of the traits that test me and if that fails then I take solace in cheese and biscuits. I am yet to find any trauma that cheese and biscuits can’t ease!