I hesitate to post this in Special needs, but thought that more people here might recognise some of DS's characteristics tbh.
We've had some concerns for a few years, but the main issue has been soiling since he was 3 and that's taken over from the other stuff much of the time. He's been seeing a paed for the soiling since 4, on Movicol & Dulcolax. Because of this, and having 3 other children in quick succession (4 under 5), we just don't seem to have got to grips with DS1's behaviour. But as he got older, the behaviour has intensified and last October he spent a week with my Dad who is a senior paed. Dad said he was fairly sure DS1 had DAMP syndrome, which is a combination of perceptive, attention and motor control issues. Some things he mentioned, like ds not being able to use a knife and fork properly, I hadn't noticed at all and I was pretty shocked.
On his suggestion, we asked for two referrals for a Clinical Paed Pysch and OT. We received instead a referral to a Paed at a children's centre who said there isn't a psych or OT in the area who could deal with DS's problems, disagreed with the DAMP diagnosis and wants to continue with a full ASD assessment, starting with an Ed Psych. DS1 as you'd expect with a child who has soiled for many years, is also struggling with bullying in his class.
These are the issues in addition to the soiling:
- Attention difficulties - difficulty following instructions, staying focused on a task (even putting shoes on), finishing schoolwork or homework will often result in a meltdown. He is sometimes literally dancing around the hall in hyper mode, I'll ask him to put his shoes on, he'll say yes, Mummy and then dance around again. He'll forget what I've asked within 30 seconds. This element has got many times worse in the last 18 months. Possibly because we can now see that it's not normal to be like this as my 4yo dts can follow instructions better than he can! He really struggles at organised sports events sometimes when he's got to follow several instructions but can't and then gets told off.
- Perceptive issues - Dad indicated he has poor sense of awareness of his body - he struggles putting a coat on, using a knife and fork, kicking a ball.
- Is highly sensitive. Will veer from blissful happiness to screaming hysteria within a few minutes and trash his room etc. I dropped him happy to his dance class last weekend, picked him up 2 hours later he was hysterical, sobbing and at the end of 20 minutes of this I couldn't tell what had happened if anything.
- Social skills - seems very immature compared to his peers as time goes on, has the approach of his 6yo brother when interacting with other children. Doesn't seem to understand the nature of conversations. Talks in a monologue and in a monotone sometimes. He saw a SALT for a few years approaching school age, diagnosis of dysfluency. Doesn't seem to understand when and why children get upset if he's been controlling or hurtful. Is so controllling that he will have a meltdown if 4yo DD puts a step wrong in a 'dance routine' he has managed for her and the others.
We requested an Ed Pysch from the school. They said they need a letter from the Paed. The Paed refused to write it. The school will only refer anyway to a pre-assessment unit, who by all accounts will refuse to let DS see an Ed Psych as he doesn't have enough problems (this from his class teacher). Now the bullying is worse, and DS says he wants to die every playtime and lunchtime he's so picked on and lonely. And still soiling. He's my baby and I don't know how to help him. I have struggled with depression, anxiety and panic for several years, it got a lot better last year but I've gone downhill since my dad's diagnosis and feel quite helpless in face of the opposition and lack of support from the school and the health system. But I want to help my son be happy and the best he can be.
- Are there some books on ASD or ADHD anyone could recommend with practical strategies to help DS and for DP & I to understand how he thinks?
- How can we get an Ed Pysch, should we go private?
- What is likely to happen as he gets to secondary school, what kind of support could we hope for/ask for?
- If your child is like this, how do you cope with it? Because a lot of the time he seems NT and then there are obviously triggers and he'll go off the rails again. Bullying seems to be one trigger. Sleep another.