‘J’s Journey’ update…starting the special needs assessment process.

Hi everyone, I thought that today would be a good day to do an update on how things are going as J begins the next stage of his assessments tomorrow. J is being assessed to find out the reason behind his speech regression and other ‘red flags’ in his play and social skills.

The initial referral

J’s speech therapist decided it would be beneficial to get J seen by a paediatrician to find out what the underlying cause of J’s needs are. So we met with Dr M. He recommended a genetics test and to return for ‘the next step’. You can read about our genetic test here as it is quite daunting (although simple) if you’ve never been through it.

The results of the test came back all clear. There is no genetic reason for his additional needs. It specifically ruled out Fragile X, which was one of the possible causes of J’s difficulties but that’s now ruled out.

The next paediatrician appointment

This was a lot shorter as we didn’t have to go through all the history and initial games. This time we talked about the results and the progress we had seen. Dr M is great at focusing on the positives which is lovely to hear. The next step was for J to be assessed further by a team of professionals in the Child Development Centre.

The main reason for the assessment is to consider Autism as an option. This isn’t a surprise to me as the word ‘Autism’ had already been mentioned several times by professionals. I also already recognised a lot of the key signs (here’s a post from 2020 summing up what these signs were for ushere’s a post from 2020 summing up what these signs were for us). The problem with J’s age is that these can also be signs of a stubborn and challenging 2yr old. Hence why we need a more in depth assessment rather than just assuming that’s what J’s issues are.

Meeting the first professionals

So, it’s been a busy couple of weeks as the first stages of the assessment have started. The Specialist Health Visitor came to the house to see what he’s like in his own environment (he spent a lot of the time playing with car keys and then focusing on taking the top on and off his airport toy). She recognised that he is great with mechanisms! Then we had the Assessment Nursery, Nursery Nurse come to preschool to see him interacting with his peers. J was playing with the cars the whole time and she saw first hand just how much he dislikes people touching ‘his’ cars. Both professional said some lovely strengths that they saw in J. But both mentioned the lack of social communication from him.

Speech therapy

Alongside all of this, J is still having his speech therapy. Our SAL therapist continues to be AMAZING. She really understands J and how to get the best from him (and deal with his worst). J has now moved onto 2 word symbol sentences with his PECS and building up his concentration.

Assessment Nursery

Tomorrow J has his first session in the specialist Nursery. This is a room that is set up like a small nursery/preschool. There will be a range of professionals such as Physiotherapist, Occupation Therapist and another Speech Therapist to do one to one games and small group activities. There are about 3 children at a time, all at different stages of the process. I will write about the sessions over the next few weeks. He will attend one a week for 3 weeks, then have a meeting with all the professionals at the end for either a diagnosis or a programme of support (even if J doesn’t have Autism or any other socio-communication disorders, there are still difficulties that J needs support with).

How do I feel?

I am asked a lot about what I think and how I feel. I’m full of every emotion there is. I feel relieved that it’s not all in my head, I feel anxiety over what the outcome will be and long term plans for J’s life. I feel teary when I realise how far J has come and then teary again when I think of how much further he has to go to reach his peers. I get angry that it’s happened to us and then a sense of calm as life goes on.

I don’t know if J has Autism. I don’t know if he’s just a little sh*t. I just know that J struggles with things that other people take for granted. He is like a coiled spring that he has to be let to unwind fully. But he’s also a beautiful little boy with an incredible soppy side.

Thank you for all the support via messages, comments on social media (FacebookTwitter and Instagram) and to my friends and family in the ‘real world’ who have supported us so far. You don’t know how much I appreciate hearing from you all x

UPDATE: J was diagnosed with Autistic Spectrum Disorder in October 2017. To find out more about our journey please check out our Autism Category

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