Diagnosis Journeys: 2 very different boys with the same 3 diagnoses...
Updated: May 18, 2021
Hello dear ones!
As promised, this blog is all about diagnoses. Our 2 sons are both diagnosed with the triple-whammy of Autistic Spectrum Disorder (ASD), Sensory Processing Disorder (SPD) and learning disabilities, and yet they are like chalk and cheese! <--- for anyone who doesn't recognise this phrase it just means 'very different'.
It feels right to start with our eldest, Maximus.
We had always intended to call Maximus 'Max' most of the time anyway, but it's a particularly handy name when you have severe speech delays too!
Max was born in November 2008 and is, at time of writing this blog, 12 years old. He was a dreamy, perfect baby. We could not believe our lucky at having our first born be so easy! He fed beautifully from me, slept so much, was healthy and basically pain free, he loved cuddles but was content by himself for plenty of time as well, he could be passed to new people with no negative reactions, no allergies, no reactions to vaccinations. Just a dream!
Our little family had a blissful life and we had no concerns about him till he was maybe 16-18 months old. Max actually had a good bit of speech by 18 months old but at 20 months we discovered he had lost a lot of his language. He was less inclined to look us in the eye, his play became more rigid and repetitive, he was noticeably more sensory seeking in some areas and avoidant in orders (though I didn't know those names for those things at the time!).
By the time he was 2 he only had a handful of words left in his vocabulary, he barely looked anyone in the eye, he wanted to watch the same tv and movies over and over and over (I'm talking back to back for days or weeks in a row) and he would play with the same toys in the same way for hours at a time blissfully unaware a lot of the time of us trying to join in. I was also aware that there might be some atypical development in him because I have a sister who taught at schools with Autistic children in her classes so was familiar with some of the behaviours and because one of our nephews was diagnosed with Autistic Spectrum Disorder.
So my husband and I shared our concerns with the health visitor at his 2 year old check up. She agreed there were some differences and delays in his development and she got the ball rolling for us to have Max seen by the multi-professional assessment team. This team was incredible. It's not a service offered everywhere in the UK and we're so blessed to have been living in Berkshire at the time and were eligible. Max was seen within a couple of weeks by 2 members of the team; a speech and language therapist and a special education needs teacher. He was signed up for a weekly class where he spent some time with other pre-diagnosis children and various professionals who each assessed our children and fed-back to the group each session. After 6 weeks of these play sessions and gentle assessments (Max LOVED them) we had a 'Team Around The Child' meeting, which again was gentle, professional, efficient and supportive. And we got a diagnosis then for him for Autistic Spectrum Disorder. 6 weeks from start to diagnosis. That doesn't happen anymore sadly, but our NHS is stretched to the very limits.
The story for our second born son was very different. Tristan was born in June of 2014 and at time of writing in 2021 is 6 years old. He has only been diagnosed for 2 years even though we noticed differences at a similar age to Max. Tristan was a healthy, strong baby and he wasn't a difficult baby per se... but he was not as happy as his brother. He had a stern face on a lot of the time, it took a lot of effort some days to get a smile from him and he was very whingey! He did love cuddles though and could be very playful and sweet. I've lots of happy memories - and photos of course! - of Tristan playing and being adorably silly as a baby and toddler. Unlike Max, who started to develop speech fairly young and lost it, Tristan took a long time to say his first words. He was a very babbly baby and enjoyed making sounds of various kinds but no words until he was nearly 3.
With Tristan we noticed subtler neurological differences in him than his brother. Tristan could maintain eye contact and was a very vocal - if not verbal - whereas Max was generally very quiet. Tristan would play fairly typically though underdeveloped for his age in some areas. His receptive language skills were low for his age (meaning he struggled to process spoken language and give an appropriate response). He had a short attention span and found it hard to follow structured play activities though he could be very imaginative and creative with how he chose to play independently. He was also an obvious sensory seeker and had a higher than average pain threshold.
As we'd been down the neurodiversity path before, my husband and I were confident with how to implement various play therapies and speech and language techniques to help his development. He responded really well to PECs (Picture Exchange Communication) and we used them for a long time at home even after he started speaking at around 3. It was just as well we DID know what we were doing with Tristan, as we actually got in contact with the Speech and Language Therapy (SALT) department where we now live when we can a little over 2 years old. He didn't get allocated a regular, appropriate therapist until he was 4. 2 years we had to wait. The therapist we were assigned to though was truly wonderful and Tristan loved her for the few months she worked with us. With the assessments from his speech and language therapist, his preschool teachers and from me, Tristan finally got diagnosed age 4.
And around the same time Tristan got accepted into The Circle Centre. This remarkable, specialist SEN nursery is now called Autism Early Support, and if you've read our Charity section here on this website you'll know a bit about them. I've written a blog about them which you can read here. They are truly wonderful and that is why Sonshine Art began; to support them with fundraising.
The diagnosis of Sensory Processing Disorder was added for both boys when they started at primary school full time and I talk more about this in my Creative Play blogs.
I've written more about each of us and how creativity and sensory sensitivity presents for each of us in the 'About Us' section
Soon I'm going to be writing about some emotions commonly felt - by everyone - but from my perspective as Mama to neurodiverse, learning disabled children; overwhelm, frustration, hopelessness and feeling lost.
If you're a parent currently going through the diagnosis process and are struggling I want to say I hear you, it is hard, but there are things you can do to help yourself manage this journey and it does not have to be as bleak and stressful as you fear right now. I would encourage you do have a look at the live videos I recorded talking about these emotions on our Facebook page. Start with this one.