Come on son, I know you can do it!

june1
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!

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I just heard him say ‘mum’!

I’ve just had my mothers day present 4 days early. And it was priceless! My 4 and a half year old just said his first word and it was ‘mum’. Excuse me while I cry.

It’s not like it’s the first time I have heard ‘mum’ said today. His twin sister says it more times than my little ears can cope with some days. But this is the first word Isaac has said. I can not guarantee he will say it tomorrow, or next week or any time after that. But he said it tonight and that is something I will hold onto for the rest of my life. You don’t ever forget your child’s first word. And you especially don’t forget it when you have waited 4 years and 4 months to hear it. This split second will remain in my heart forever.

And the hope it gives me is incredible.

To get to this place Isaac has had learning support at home and at nursery, 14 months of weekly speech therapy, I have attended a four month course on how to communicate with my autistic child, and he has had daily one to one with countless nursery staff and other professionals. I have sang with him, read to him, played with him, prayed for him and did everything I could think of to help him. I have simplified my language and praised him for trivial things like ‘good sitting Isaac’, ‘good walking Isaac’ and ‘super waiting Isaac’. I have rolled balls to him for hours, ticked him to get a reaction, named all his favourite toys, whispered in his ears, stroked his hair and held him close. But most of all I believed in him.

Even though he has been making some slow progress recently I still wasn’t expecting tonight’s miracle outburst. Sometimes you just find yourself in a place where you continue on and wonder if any of what you have been doing is getting you anywhere. And then it happens: breakthrough!

And often when you least expect it.

Tonight was just an ordinary Wednesday night for us. The kids had been to their regular kids club for families affected by autism. Isaac went through his usual transition routine on coming home and the house was pretty calm. Dad started running a bath for the kids and I told them both it was bath time (Isaac’a favourite time of day as he just loves water!). Isaac understood the cue and began walking up the first few stairs to head to the bathroom. I followed behind and on the third step he stopped, turned, looked me in the eye and just said that magic word every mother longs to hear. “mum”. That was it. Nothing else. I could have kissed him, held him, never let him go. But that would have overwhelmed him. Instead I held his hand and we climbed together and headed for his favourite activity of the day. He was totally oblivious to the tears forming in my eyes and the faster beat of my heart. He had no comprehension of the miracle encounter that had just taken place. He was just happy to have my full attention and strip off and get in the water. That’s my boy!

Just two nights before this,when out in the car, his twin sister had asked, out of the blue, when her brother was going to get better and not have autism any more. And despite the fact she caught me unprepared (are we ever really prepared for the questions our kids ask?) I did my best to reassure her that her brother would always have autism but he could still learn to do lots of things she can do like saying words, playing with toys and going to school soon. With her usual 4 year old faith she replied “He will talk to me one day mummy. That’s what children do.” And then she went back to talking away about her favourite DVD characters once again. It wasn’t appropriate or important to correct her or break her faith. If she can believe her brother will talk, then so can mummy. So of course, she wasn’t even phased one bit by tonight’s miracle. She was expecting it so allowed her brother his moment of glory and then, like any child her age, took advantage of mum’s good mood and asked for extra toys in the bath! And the evening continued like any other.

Except something miraculous happened in my house tonight. We had a breakthrough. We reached a milestone. We shared a treasured moment. We overcame autism and neurofibromatosis type 1 and any other name you want to say my son has. He said a word…in context…with eye contact…with meaning. He touched my heart. He just called me “mum”.

Breakthroughs come when you least expect them. Never give up believing. Image