Hi everyone,
I’ve been reading this board for a while but this is my first post. I’m hoping to hear from parents whose children have had a similar profile, whether they eventually received a diagnosis or not. I’m just feeling a bit lost and would really appreciate hearing from people who’ve been through something similar.
My son is 6 (he’ll be 7 in October) and we live in South Wales. He was referred for a neurodevelopmental assessment around five months ago and we’re now waiting. School have been really supportive and they recognise that he has a number of difficulties, although interestingly they don’t tend to see the meltdowns that we experience at home.
Some of the things we struggle with are:
● His speech is behind his peers. He enjoys chatting and has good conversations, but his speech isn’t always clear and he struggles to express himself as well as other children his age.
● He has good eye contact, is affectionate and enjoys being around other people.
● He has attention and concentration difficulties. We often have to repeat instructions several times before he’ll even start doing something. He struggles to focus on everyday tasks.
● His fine motor skills and hand-eye coordination are delayed. He still struggles with things like using a knife and fork and is a mess when he eats.
● He’s always had much less energy than my other two boys and is on the 1st percentile for both height and weight. He was previously iron deficient but we’ve been told that’s now resolved.
● He has quite a few sensory differences. He’s obsessed with water and especially loves playing with blue latex/rubber gloves. He seems to get genuine comfort and enjoyment from them. We don’t usually let him play with them very often and I often wonder whether we should just let him have them as a safe sensory outlet. He also constantly takes his shoes and socks off and, last Christmas when things were particularly bad, he refused to wear clothes for a period of time.
One of the hardest things is that he can seem extremely defiant or resistant to everyday requests. I honestly don’t know whether it’s defiance or whether he’s genuinely struggling with demands, but simple things like brushing his teeth, getting dressed, putting his shoes on or leaving the house can become huge battles. We often have to ask him over and over again before he’ll even begin, and sometimes simply asking him to do something is enough to trigger a meltdown.
The biggest challenge by far is the meltdowns.
They can happen over what seems like something really small. Once he’s upset it’s as though he gets completely stuck. He’ll repeat the same sentence over and over while crying and screaming. For example, “Daddy, I don’t want to brush my teeth,” or “Daddy, pick me up,” on a constant loop. It’s almost impossible to distract him or reason with him once he’s in that state, and the meltdowns can last anything from 10 minutes to well over an hour.
The confusing thing is that everything fluctuates. Sometimes he’s extremely emotional, resistant and seems to struggle with almost everything. Other times it’s much milder. We even had around two months where he was almost completely fine with hardly any meltdowns or resistance, which made us wonder if we’d imagined it all. But then everything came back again. This pattern has been going on for years.
He also still has toileting problems. He regularly wets himself and occasionally soils himself, which is becoming increasingly difficult now he’s nearly 7.
Sleep is another huge issue. He often wakes incredibly early - sometimes at 2am, sometimes 4 or 5am - and is simply awake for the day. He can’t seem to get back to sleep.
At school they definitely notice his speech delay, sensory needs, tiredness, low energy and attention difficulties, but they don’t really see the meltdowns. Home is a very different story.
For balance, he’s also a lovely little boy. He’s affectionate, funny and loves music. He has a real talent for drums and musical instruments, and when he’s happy he’s an absolute joy to be around. That’s what makes it so hard because I can see how much potential he has, but everyday life seems so much harder for him than it does for my other two boys.
I also have two other boys aged 9 and 4, so the meltdowns, broken sleep and constant worry have a huge impact on the whole family.
While we’re waiting for the assessment, I’m wondering what else we should be doing. I’m more than happy to pay privately if it would genuinely help, whether that’s occupational therapy, Psychologist or something else, but I’m not really sure where to start. If anyone has recommendations for services or therapists in South Wales, I’d be really grateful.
I’d also really love to hear from parents whose children are a bit older.
If your child sounded similar to mine when they were 6 or 7, how are they now? Are they happier? Has school become easier? Did the meltdowns, sleep, toileting or resistance to everyday demands improve? Did things get easier as they got older? What helped?
I think the uncertainty is the hardest part at the moment. I’d just really appreciate hearing from anyone who’s walked a similar path and can offer some advice, reassurance or hope while we wait.
Thank you so much for reading.