G&T, ASD, ADHD? Going round in circles with dx

[CrowieGirl432]

Hi all

Is there anyone out there with a 2e child who can share their diagnosis journey??

I feel we are going round in circles a little and it’s hard not to feel frustrated.

DS 5 is bright, intense and argumentative - and can be incredibly difficult at home. He’s very outgoing but other kids don’t seem to get him and he often ends up in conflicts over sharing/turn taking. V strong sense of justice. He can’t sit still/pay attention in class. Very easily distracted. Yet he is keeping up with the work.

We’d seen a private child psychologist after some bad behaviour at school and based on our report and school’s report she suspected ASD. I then saw NHS community paed who recommended we go for formal ASD assessment.

All okay - we are getting somewhere. Then psychologist sees him in clinic to start ball rolling on getting an assessment and says she can’t see any signs of ASD - but perhaps ADHD?

Part of assessment was IQ test that he could not sit still for /attend to. He still got average to superior scores. I don’t know how much credence we can give it.

Anyway, it just feels like one step forward and two steps back at the moment meanwhile behaviour is pretty horrible at home and school is up and down.

Can anyone give me any advice about the process? Am so desperate to understand what is driving his difficult behaviour. Will we ever get an answer?

Crowie

We had a scratching incident this week. Sounds like your week was similarly tricky with head butting.

I’m not enjoying the limbo either. I’m also knackered much of the time with a very chatty / energetic/ temperamental boy and all the other things I have to think of, including in complete opposition a quiet and calm toddler.

I think the worst of it is that all his other friends who were hyperactive toddlers seem to be calming down and their mums are getting on with school life. Whereas I’m trying to avoid other school mums already, praying that he’s ticking by at school, listening to DH and the gramps complain about him while simultaneously denying anything could be wrong. With a sense that we are not all thriving so much as getting by ☹️.

@RueDeWakening
Having the diagnosis has meant that we as parents are much more accepting of his quirks, and understand more about why he does certain things. It has also helped us find ways to communicate better. But currently this isn't following through to school, and I don't quite know how to make that happen.

You need to be That Parent, like all the rest of us.
Read the reports you've been given, they should be full of recommendations and interventions that school should put into place.
If there aren't any (and I've not seen a report of my dd's that hasn't had any) then get in touch in writing with the people who wrote the reports and ask for recommendations for school, home, follow-up appointments and further referrals.

Can you self-refer for OT (state if it's a sensory paed OT you need) or do it via your GP? Has your GP got copies of the dxs? If you're not sure, take copies with you.

Speaking or using the phone when dealing with school can be a waste of time, they agree to do things just to fob you off. Learn to create a paper trail.

e.g. you ring school because something's up, they say they will do ABC to sort it out. Then you email that day and say Further to my conversation with [name] I am pleased to hear you are going to do ABC from [agreed date] and would be grateful if you could let me know how my child has reacted to this intervention at the end of the week.

Put a note in your diary then if you've not heard anything, email again and ask how ABC is working or not for your child.

Rinse and repeat for any problem.

You really, really have to keep on and on at some most schools.

If school is not meeting your dc's needs, then apply for an EHCP/ECHP I never went down that route so never get the acronym right, but other posters will advise on that. your paper trail can come in handy for that as well to demonstrate school are not meeting your dc's needs.

Oh Planky. It’s shit isn’t it? I’m sorry you’ve had a rubbish week too.
I keep trying to tell myself that we are doing all we can - and more - but as you say it is totally and utterly exhausting and demoralising at time.

I too am comparing DS and others families to our and feeling a searing jealousy that they all appear to be settling and doing what’s expected, whereas we are in this miserable unchartered territory.

I avoid the other school mums as feel so embarrassed by DS’s behaviour and when the very rare offer of a play date comes along Im so worried that he’ll act out that I make excuses not to go. It’s easy to feel totally isolated.

I said to DH that if only I had a crystal ball to see that he turns out ok then I’d relax. He reminded me that no one gets that or any guarantee that their DC will be ok. Doesn’t help when you feel totally in the pits though.

The SN boards on MN are second to none online, no matter how much you can think you're the only one going through having a child who is so different to their peers, there 's plenty help over there and stories of older kids whose parents have been through what you're going through now and can let you know that despite it not being a stroll in the park, it's not as bad as you think it is. These two are the busiest.

SN Chat www.mumsnet.com/Talk/special_needs_chat
Topics disappear after 90 days

SN Children www.mumsnet.com/Talk/special_needs

Thank you so much BlankTimes. Really appreciate it :)