When Joseph was diagnosed with autism aged 3, I wondered where we would both be 5 years on. And now as Joseph celebrates his 8th birthday, I find myself reflecting and for the first time since starting this blog, am typing it choking back the tears at memories. Some of those tears are born out of sadness but without a shadow of a doubt, some are tears of happiness as we have moments that make me proud to be a parent.
I spoke previously about this not being the journey I planned for myself or for Joseph and had we been experiencing most of what my friends are experiencing on their parental journey I wouldn’t be writing this blog. And as much as I feel a sense of fulfilment after writing, I would rather be moaning about something, anything other than autism and how we manage it. Our lives are difficult, but we manage it through hard work (Kev’s), an extraordinary amount of organisation (Kev’s) and a sense of humour (mine obviously).
Our lives are awash with celebrations of simple achievements that I want to take for granted but I don’t. He told me the other morning “take your iPhone out of your pocket and give it to me” A simple request, but to me I am incredibly proud as to how he has built a sentence and used it correctly. I want to shout at him for being cheeky and driving me nuts asking for an i gadget for the 30th time before 08:30 but I can’t help but let the corners of my mouth show a little smirk at how he has communicated with me. My response isn’t as pleasing to him though as I tell him “Nice asking Joseph but no, because I am sick to the back teeth of you asking for my iPhone” Probably not the greatest sentence building from me either given we were on the way to the dentist and he’d already tilted his head to one side, given me the shiteye and said in the most sinister manner possible “NO dentist”.
I suppose that is one thing I do have to be thankful for; I appreciate the smallest of accomplishments that you may overlook. We hear people talking about those with a visual or hearing impairment using their remaining senses to appreciate the beauty of the world within which we live. I utilise all of my senses to soak up every single moment and certainly don’t take anything for granted.
I get asked every single year by someone “Is Joseph looking forward to his birthday?” I am usually polite in my response (I know this may shock some of you) just as I am when asked the same question about Christmas. People are only asking the obvious question after all and why wouldn’t he be looking forward to it? Well, the truth is that he has never really been fussed one way or the other about birthdays despite my best efforts. Most of you will be trying to temper it down with your own children and be complaining that they aren’t shutting up about their birthday as they are way too excited. The Dentist noticed it was coming up to his birthday and asked him if he knew when it was (Saturday) and helped him out by saying “S” and he replied “Seven” So it’s taken me a year to drill it into him that he’s 7 and now I will have to explain to him that he’s had a birthday and he’s no longer 7.
This year, I asked him what he would like for this birthday and he answered “Presents and party food” He now understands what a birthday is, but there is still an absence of a sense of excitement.
“Joseph what presents would you like?”
I considered wrapping a whole host of random red objects up but thought that could be perceived as cruel and knew that what he actually wanted was red wrapping paper.
Each year I look forward to him getting older for the pure reason of that I hope I see an improvement in his development but also secretly dread it as I then start to panic about the next stage of his life, senior school and then leaving school. I try to rein myself in at this point as I don’t want to brush anything under the carpet but I know that there is no point worrying about these decisions yet.
I also worry about how to celebrate his birthday and have experimented with different options, either a party at home or a play area. Who do we invite? Do we invite my friend’s children or people from school? A mixture of both? How do I know who to invite? I ask Joseph and he recites the class register near perfect, but who are the people he interacts with? The last few years I have relied on the teaching staff to give me ideas of names. Once I’ve invited people, I then worry as to whether they would have any interest in going to a party of Joseph’s and whether they’ll turn up. This year has been complicated by the fact it’s easter holidays and some of the people who play with him are going away. By the time his birthday is over, he may have aged 1 year but I have usually aged at least 4 and need to have a serious word with myself.
So the actual day this year, how did that go? Well we talked about it again the night before and he realised he was going to a party but I wasn’t convinced he knew it was his. I heard him at 05:00 and wanted to believe that he was awake because he was excited but knew it was because he was coughing and he was ready to get up. We went through the usual motions of me wandering in, trying not to fall down the dip on the landing and telling him it was still night time. He rubbed his throat and told me “I feel poorly” I told him I did too and to go back to sleep and be quiet and that we’d get him some medicine when the sun came out.
On cue at 06:35 when the sun does indeed appear on the clock, Joseph appeared in our room and said good morning (and had made a miraculous recovery). I wished him Happy Birthday and he looked at me as if to say “you are a crazy woman, you are meant to say Good Morning” We’d decorated the living room with balloons and banners and he seemed quite pleased with the array of presents awaiting him. He opened them, had a fleeting look and asked us “Shall we open another one?” until they were all gone and then he went and found the old iPad. Fantastic!!
I went out of for a run and whilst sweating my arse off up and down the hills, I was thinking back to 8 years previously and realised at that time I was probably in similar tangle, only without drugs to help me through it. I was hoping that this day would not need the same amount of medication.
We got Joseph ready for the party and I wondered whether he would be pleased. Fortunately, the mix of people I had invited did not need me to explain as to why Joseph may behave in a particular way and I left feeling happy in that we as a family (as blended as it may be) had given Joseph the best day possible. Joseph had been surrounded by family and a whole host of friends, some that had travelled a great distance to be there. We pride ourselves on that we provide for our children and give them everything that they need and not necessarily everything they want. We don’t throw money at them in the hope it will win over their affection and we are modest in what we gift them. A semi-wise person once told me that ‘Love doesn’t pay the bills”. It may not but it provides for us every single day and we have a home knee-deep in it (love). What we experienced yesterday, money cannot buy. He had the biggest smile imaginable when he was presented with his paragliding cake. And when we sang ‘Happy Birthday’, he relished in that moment, pointed at himself when we sang the words “to Joseph” and started everyone off with a ‘Hip Hip Hooray’