Firstly, apologies that I’ve not been as active as usual. In all honesty I have found it tricky to put things into words, even in my own head. I’ve always wanted to share my true feelings to help parents going through similar circumstances and just to raise awareness. But how can you write how you feel when you don’t even know yourself?
Wednesday was J’s final Assessment Nursery and multi-disciplinary meeting (all the professionals together in one room). I believed this would be it…THE day…THE end of all the wondering. But it wasn’t and I’m not going to lie, I was gutted.
The assessment Nursery sessions have been interesting to watch. The professionals were all lovely and friendly and genuinely seemed interested in J. They played alongside him and encouraged him to play more adult led activities too (mixed success there). He had gym sessions where he could run and climb and jump. On the last day they played in the garden. J was happy to find they had a climbing frame and slide. He was also having fun with the bubbles.
Probably the funniest part for me was when his paediatrician tried to play a game of football with J. He kicked the ball to J who then threw it back. Dr M then asked if he wanted him to kick the ball back. In true ‘J style’ he said “yes” whilst walking away to play on the climbing frame. ‘So yes Dr M, you can kick the ball but I’m off’ was J’s real message. J also found a way to get out of playing the ‘shared play’ shopping game…give all the food to another adult in one go, and walk off. In J’s world he has no food left in his arms so the game is obviously over! He’s too clever for his own good sometimes.
Anyway, after everyone else had gone we stayed behind for ‘the talk’. The professionals all disappeared off into another room to sum up what they had seen and make their decision. So I sat in the next room with a giant pit in my stomach. Honestly felt sick! It was a combination of relief this was coming to an end and we’d have an answer mixed with the worry about what they were going to say.
In my head the worst scenerio was that they would say it was my fault. That J’s issues were caused by my parenting or something I didn’t do properly during pregnancy. After all, I’m an early years professional. I have been in preschool for 14 years. I should have a well developed, model child shouldn’t I?
The professionals returned and we begun the feedback. In all honesty I’m going to have to read the report to get more details as I felt myself zone out. Not in boredom but I’m sure I had some sort of silent anxiety or nervous breakdown!
J’s diagnosis is Social Communication Disorder. Nothing more was really explained at that point. That will happen more at the catch up session with the specialist health visitor in a couple of weeks. They were exploring Autism but feel that as he’s only 2, some of the behaviours may be age related so they couldn’t make a clear decision on that today. Our paediatrician wants to see us for more appointments and to keep check on J’s development over the next 6 months. This isn’t the end as I thought it would be [2020 update: in October 2017 we received a confirmed diagnosis of Autistic Spectrum Disorder]
We have a path to walk on, but it’s not the end of assessments so there is still the ‘whats and maybes’ (I was really hoping that this would have been the end to all of those). But it’s progress. I can acknowledge that there are areas J has difficulties with and it’s not just a delay or being ‘naughty’. We know what is going to happen next, or at least for the next 6 months. We have more professionals involved to provide a support framework so we can find ways to help J. I am happy about that. I am frustrated too, but now the shock and emotion of the build up has gone I can appreciate that our doctor isn’t wanting to rush anything long term. It’s better to get the diagnosis and support right.
I’m fortunate to have family and friends who are very supportive. They listened to my worries and anxieties the days before the assessment. They let me rant and cry after the appointment. No one told me that I was wrong to feel this way or made me feel stupid. If you don’t have people like this in your life then let me be that person…
…you are never wrong to have feelings of despair, fear, anger or even grief when you are waiting to find out or have found out your child has special/additional needs. You are not wrong to have these feelings even if you get told there’s not a formal diagnosis. Being a parent is hard. You go by a mixture of your gut feeling and what you see and read about children and development. It’s a scary time and potentially life changing so let yourself feel what you feel. It doesn’t make you a bad person to hope for a diagnosis. It makes you a Mummy/Daddy who wants answers and support for your child. A reason for the difficulties…who can blame you for that? But if these feelings start to overwhelm you please, PLEASE speak to any of your professionals. children’s centre staff, teachers Gp…just someone.
Thanks for reading and for being part of our journey. If you’re new to our adventures, this post was written years ago and lots has happened since then. Please check out the Autism Category to find out everything from the beginning. I hope you’ll stick with us and share your experiences. We need these communities and I am honoured to be part of them ❤️