When you have a child who is seriously struggling you would expect therapists, teachers and support staff to do everything they can to help. You put your faith and trust in them. They have years of training and experience behind them and have skills that a humble mother couldn’t possibly have. You send your child to school believing they will push him, encourage him and motivate him to bring out the best in him. You are in fact handing over your most precious possession to them in the belief that they have the necessary skills to help them. They have expensive technology, highly trained staff, a vast array of agencies at their beck and call to support them and the facility to give my child undivided attention.
If only life was that ideal. The reality is that budget cuts, lack of interest and time restraints often mean that some children fall by the wayside.
So when my son’s school notified everyone that the speech and language therapists were no longer going to give my child one to one intensive therapy and direct support, when his individual education programme showed no signs of pushing him to learn to speak and was heavily leaning towards getting him to point and use some pictures, when even his legal support document was threatened with being closed I decided I had no choice but to show them what I believed my child could do.
It seemed impossible.
While the staff and professionals working with Isaac all have the luxury of a full nights sleep, I am functioning on a few hours a night and some night less. While they are entitled to regular breaks, have the support of other staff and get paid a salary, I am balancing life with two children with autism, have very little training and get paid nothing more for working intensely with my child. They can go home at the end of a frustrating and emotional therapy and forget about it. I have to wipe my own tears, internalise my own fears and deal with the heartbreak of knowing this is not just any child I am working with, this is my beloved son.
It may not matter to them if they never hear my child’s voice. But it mattered to me.
Just weeks before his sixth birthday, not having spoken any recognisable word for over a year and a diagnoses of classic autism, Neurofibromatosis and global delay, the odds were not on my side.
But I had to try. It helped that he took a sudden interest in hand dryers and hair dryers but could not work them. So during half term week I decided to do some intensive interaction with him to try and get one word. I found him one day on my bed pointing to the hairdryer. Now was my chance. I modelled the word lots and let him see my mouth. I said the word and then turned on the dryer. His excitement showed I had a motivator. So every time he went on that bed I got into the room with him and worked with him to say a simple word. One syllable, just two little letters, not much to ask. But a massive mountain for my boy to climb.
Here is what day 5 was like: he was trying so hard:
But I wanted to show he could actually speak. I want to prove to everyone involved it is worth continuing to teach him to speak. I want them to see he is worth believing in.
And here is day 7:
It may not be too clear but he certainly vocalised a sound not unlike ‘on’. It may only be for the hairdryer, but it’s a start.
I am exhausted, physically. mentally and emotionally. Some days this week I could have easily given up. But love carried me through. And it was so worth it.
Don’t stop believing. Every child has potential. Despite funding issues, staffing constraints and time pressures I refuse to let anyone stop believing in my son.
He has so much potential. And I intend to prove that. I just need Isaac to do this with me.
Come on son, I know you can do it!