Everyone likes to read an inspirational post that can be shared over and over again and I love to be able to deliver them; today is not that day.
Ironically in my last post His Master’s Voice, I spoke about Joseph’s speech and language and his improvement in the way he communicates. I explained how he has no current input from the Speech & Language Therapy team because he has some speech and language and how although he can speak, he often has a lack of understanding to be able to respond fully or correctly.
Today, I received a phone call from one of the Speech and Language Therapists who had been to observe Joseph in school and carry out a number of assessments. I have to admit, I wasn’t fully listening to the initial part of the conversation. As usual there was a number of distractions in the home and I wasn’t concentrating on what was being said. When I heard the “Joseph is extremely…” I had finished the sentence in my own head “smart and improving greatly” but that wasn’t what was said. I was told that Joseph was behind with his speech and language. In some respects, it should not have come as a surprise but it’s been a long time since I had such a conversation. My invisible nuts had been well and truly kicked.
I try and focus on the positives and I believe so many other people around us do; we are all aware of the areas that he struggles with. Although he has made improvement, his lack of understanding has the potential to impact on his learning. He couldn’t accurately describe what was happening in a picture and when asked a question about someone’s emotions he didn’t give the desired answer. I think it was something around a child hurting themselves and how would they feel and he responded “ok”. I wondered whether this might be because I tell him he’s ok after he has hurt himself rather than him not interpreting emotions correctly. It would be so easy to make a million excuses for him but I won’t, I know there are times I need to accept that his autism will prevent him from being able to do certain things.
On the positive side there will be more strategies for the school to use with him and also us at home but I’m disappointed that it’s got to the stage that Joseph has fallen behind and will now finally get the input he has always needed, purely because he’s struggling. I don’t want to get into an NHS debate but these are the difficulties we face in an ever stretched service and why parents like me are labelled pushy for trying to get the support a child needs.
I felt angry at nobody other than myself; I should have pushed harder so that it hadn’t got to this stage. The person who needs me most, I had let down badly and no matter how many supportive words of there being nobody who could fight harder for this boy, it does not soothe the pain I feel right now.
Not a day goes by without me worrying about him and his future but it is very rare I cry about it these days. A build up of pressures over the last couple of days probably didn’t help and so I sat and wept. I cried for my son and the long road that he will always have ahead but I also selfishly cried for myself; the pressure and responsibility I have to ensure that he has everything he needs and deserves. My sole purpose in life seems to be to fight on behalf of Joseph and to try and prevent kicks in the nuts to either of us.
I hope tomorrow we come back fighting, stronger than ever.