This is a very personal blog post that I wrote on my old blog "Young not Dumb" back in September 2016. This was written when I was going through the assessment process for my son to be identified, as autistic. He was only six at the time, and I remember it as a time of immense worry and loneliness, as I was walking a path that I had no experience of and no-one I knew had either. I can remember the torment of not knowing if my concerns for my son were real or whether it was me and that I was just failing him through my own inadequacies. Since this journey, I have learnt a lot and have been supporting other parents on their journey with their children. I know intimately that feeling of aloneness and if I can help someone to feel less alone in this journey, then I think that is a good thing.
There is nothing lonelier in this world than being a parent to child that you suspect has a hidden disability. You give birth and cradle your perfect child in your arms and feel that overwhelming love and feel hopefully for the future and what it may bring. I am not for one second suggesting that parents of children who are born with more apparent disabilities do not have that feeling of loneliness and separation, as I am positive that you do, however, I can only imagine that you feel that a lot sooner and then have the flurry of professionals inundating you with opinions, interventions and prognosis. When you have a child with a neuro-development condition this is not apparent for some time and it becomes a gradual dawning realisation until one day you are hit by a ten tonne truck and then you have to try to convince everyone else of it!
With my own son I had concerns if I am honest from about a year old when he had absolutely no interest in walking, I was told he was just lazy and a boy. He began walking at 19 months and even then he walked like John Wayne for at least the next year, he never looked steady and would frequently fall. I dubbed him the human pin ball machine as he used to bounce off tables and objects bashing his head along the way and was never bothered. My son didn't talk either, he said the odd word, he was kind and liked to throw us the odd bone to keep our worries at bay. I remember his two year check and talking to his health visitor about my concerns that he wasn't talking and at the time he was stacking cups, she asked if he knew his colours I replied that "I doubt it, he doesn't talk" and lo and behold he said orange as he picked up the orange cup. She then believed we had nothing to worry about but worry I did.
The A word had crossed my mind and I kept pushing it away as it was too big and scary. I knew nothing about autism other than having watched Rain-man in the eighties and that was not a reflection of my boy. M was loving and affectionate and we had an extremely close bond, so close in fact that he wouldn't let anyone else near him, he would scream, kick off or run and hide. No one else could pick him up, change his bum, dress him, put him to bed, read him a story...he was not an inclusive employer!
He didn't really play with other children, but I put that down to his lack of speech. When he was little and I was at baby groups with my friends and their children of similar ages I could see that my boy was different. It was not in ways that was easy to articulate, as if by saying it out aloud would make it come true. It also felt like a betrayal of my son. To say I was concerned was to say something was wrong ,but to me he was a perfect version of himself. M has always been full of character, he is funny, a slap-stick comedian, he is kind and sweet and has rock star good looks. He was happy in his world, but as much as I tried to conceal it I was worried about his lack of "progress".
When my son was about to started pre-school I remember everyone telling me that he would really "come into himself" that he would "flourish" and I wouldn't recognise him. Things were not as easy as I would have hoped or anyone would have anticipated, he didn't want me to leave him and I ended up having to stay far longer than other parents. People always made me feel that I was fretful and over anxious parent, but that was not the case, after all I had another child and I knew the score. I would have loved nothing more than my son being more independent but I knew what he was like and I didn't want to see my child distressed. Whilst at pre-school it became apparent how uncoordinated my son was and that his fine and gross motor skills were vastly under-developed. He had no interest in mark marking and never did at home, hated anything sticky or gooey and refused to paint. He was only interested in toys you could hold in your hand, one for each naturally!
The pre-school were concerned about his speech (finally someone other than me) and he was referred to speech and language therapy. He was assessed in December 2013 and we were told at the end of the assessment that he had a mild speech delay of about 6 months and that he was "definitely not autistic". To say we were relieved was an understatement. No one would wish difficulties on their child and only having a limited understanding of autism you know from what everyone says it is "bad" and not something that you "want" in your life. I had to go on two workshops and that was it, get on with it! By this time it was coming up for school and my best friend asked me one day if M was excited about starting school and I said to be honest I do not think he has a clue of what it is and what is happening. Again, I pushed down my concerns and loved my son and continued to be his mum. I had so many worries before he started school, he wasn't toilet trained (not for the want of trying) he wasn't speaking and I was worried he was going to get lost and not be able to ask for food or drink or let anyone know if someone was being mean to him. I was really hit by how vulnerable my son was, but no-one else seemed worried at all.
Through all of this and the journey that lay ahead I never once vocalised to anyone my deepest and darkest fears. I was scared that the world was going to tell me that there was something "wrong" with my son, that he was not the "perfect", sweet and loving child that had stolen my heart and lit up my world. When he started school they told me he was not ready for full-time education (something that I had said to them but they dismissed me) and would only be part-time until January. I remember about 2-3 weeks of him starting school and my anxiety levels were high as I was waiting for someone to tell me at any minute that my son had special needs but no-one did. I sought out the SENCo and asked her if she was going to statement my son (yes, I know shocking how ignorant and naive I was then!) and she said "no, we are only concerned about his speech". A re-referral was put into to SALT and he was diagnosed with a significant speech delay and speech sound disorder that would require long-term and intensive speech therapy (only one year after the first assessment).
He started well enough and the first parent's evening was fine but by February there was a different story. I walked into his parent's evening and walked out an hour later with a long list of the teachers concerns as my son did not play appropriately, would hide under tables and refused to do any work. He had also started becoming aggressive to the other children if they came too close to him. I was floored and didn't know what to say and how to make it better. I had been spending sometime recently googling trying to find what could explain the differences in my son and I asked his teacher if she thought it was sensory processing disorder, she said "no". From this point onward I was getting pulled into the classroom at the end of the day most days. M had invariably done something they didn't understand or he had hit or bit another child or broke their glasses. I spent most of my time apologising or being mortified or both! You would never know it to look at him as he looks like the perfect angel and most of the time he is very placid but get in his grill and you'll see another side. My concerns for my son were increasing and I didn't know what was going on or how I could make things better. May be it was something I had done or not done, I am his mother after all and we all know mums are to blame!
Two days before the Easter holiday in 2015 his teacher pulled me in the classroom in the morning and said that she wanted to chat. She told me that she has been googling all of M's difficulties with fine/gross motor skills, lack of social and emotional development and had come across dyspraxia and thought that it fitted a lot of what he was experiencing. A huge wave of relief flooded my whole body, I wanted to jump up and down and hug her, someone had finally seen something other than me! From this point I arranged meetings with the SENCo and school nurse and made sure they put a referral into Occupational Therapy and Physiotherapy. My son was subsequently diagnosed with hypermobility and sensory processing difficulties.
The journey had not come to an end only another beginning, as it soon became apparent to me that this was not the full story to my son's difficulties. None of the professionals agreed with me and thought I was being over zealous or over anxious but I knew my boy. His speech was developing but his interactions with children was not progressing. No one looked at him the way I did. No one took the time to really observe him, as he would just get on with his own thing. I would hold him at night while he slept and I would weep. I cried from fear of what might be and I cried because his future was uncertain and I cried most of all because I could not protect him from a world that would struggle to understand him.
Postscript: I cannot read this without it bring me to tears, as the emotions of the time come hurtling through time and space. My son received confirmation of his autistic experiences and identity in November of 2016. I can remember a feeling of overwhelming relief, that I was right and that my son did experience the world differently from most. We have experienced many horror stories in our journey together, and from working with other parent-carers I know our experiences are not unusual or uncommon. This is why I wanted to add a parent support service to Karuna Therapeutic Services, as I know there is woefully inadequate support out there for parents of children with neurodivergence. This is work that I am passionate about, as I have and do live this, I have accumulated a wealth of knowledge and experience in this area and I want to help others navigate their own journey. You do not need to struggle alone. Reach out.
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