FROM SIMONE: I was born with epilepsy of the fainting type. After the several tests and scans they performed they also gave me a second and strange diagnosis, “Arrhythmia of the brain” which meant that my brain waves “ticked” faster than usual. Thirty seven years later when my son was diagnosed with autism I came to learn I too had a form of autism or Asperger’s Syndrome.
>Just because I was not aware of it, it didn’t mean I escaped the customary symptoms, so I used to ism. I had three main isms, rolling my hair on my fingers while staring into space, actually I was imagining some really fascinating stories in my head, talking about Star Wars and making lists. Making lists was my favourite ism. I used to make all sorts of lists but one I made and worked on over and over again was my films I’ve seen list. One film that featured in all my lists was the so called, in my Mother tongue “My son my world”. Not having the facility of recording films kids have nowadays, I kept an eye on TV listings always hoping they would show it again and I could place one more tick on my list.
I don’t know how many times I have watched this film but what I think compelled me to watch it over and over again was the fascination I had with the blond lady who decided to join her son doing the strangest things like spinning plates or rocking back and forth, just to be with him, just to love him, and she did that for hours. When I watched it I thought it would be loads of fun to rock like that and secretly desired to do it too, not knowing I was destined to also rock for years!
When my son was two and half years old the word Autism was first mentioned and I straight away remembered “my film” and that it was a true story, so I looked up the title in the internet and the real title and website came up first on the list: Son-Rise – A miracle of love
Since then I have never looked back, I attended the Start-Up in London in 2005 and started running a Son-Rise Program for my son, which I still do.
What compelled me to write about joining was that recently I have been discussing about joining with many other Parents and Professionals and I have noticed that it is often common that the real meaning of joining is forgotten amongst so much information available to Parents nowadays. Many people perceive joining as a means of getting their child’s attention, a means of getting them out of an exclusive state into an interactive state, which is often judged to be more important.
What I often tell my volunteers when I am training them is an analogy, the times my child is isming or exclusive is like when we are sleeping and the times my child is interactive is like when we are awake, they are equally important, everybody loves to sleep and complain when they don’t get enough of it, yet we don’t “do” much when we are asleep but there’s a general understanding it’s “good” for us. So is joining! Perhaps because I needed to ism I understand how important it was for me to organize my thoughts, to recharge my system, to make sense of the world. When you join your child you are telling them I understand what you are doing is good for you and I will wait as long as it takes and I am delighted you are doing it.
I recently had this discussion with another Parent who thought joining “didn’t work” for their child because they would join the child for hours and the child would never be more interactive than before. I thought perhaps it was easier for me because my son has never ismed for long periods of time and I asked myself how long would I be willing to join my son for? The answer came on the following day as if he had heard my thoughts (I often wonder if he does!) because he ismed for 2 hours or throughout my morning session. He then had sessions with three other volunteers when I decided to go back in the playroom for another session. The last volunteer to leave the room said he was very tired, as it was expected, as he had only slept a few hours the night before and was already playing for 8 hours so it was no point to go in the playroom but I insisted because I wanted to see how long he wanted me to join him for. I joined him for a couple of minutes, he came to me, gave me a big hug, a kiss, took me by the hand to a game and we played for no less than one hour, which he had never done before as his attention span is of an average of five minutes.
That day the lesson I took for myself was that joining is a miracle, just as sleeping, when you apparently don’t do much, but all your energy gets replaced, when you join your child you don’t look at each other, you don’t communicate, but you speak a much louder language, the language of acceptance, you are telling your child, it doesn’t matter what you do, I am with you, and there’s no game you can play or technique you can use to engage your child that will show your child more love, that will create a stronger bond.