What happens after a diagnosis of a behavioural issue?

[cjt110]

So, I'm talking something like ADS, ADHD etc.

We are seeing the HV on Friday and I suspect very much so my son has something Have always thought so

His key things are:

• Refuses to wear anything that doesnt zip up (expect his school jumper and only puts that on last before we go out);
• Until 2 weeks ago (He's almost 5 and a half) would only wear jogging bottoms/pj bottoms and refuse to wear jeans at all;
• Hates getting dressed and we have daily battles;
• Hates his hair being brushed/touched/washed although this has got better with time;
• Hates his nails being clipped - being able to do this is sporadic;
• You can ask him maths questions and he gets it right 100% of the time, faster than I can;
• He is very routined and if something changes it he is distraught - for example if he doesn't go to my Mum's on a Thursday and Saturday.
• He eats limited foods - his diet consists mainly of pasta, eggs, veg - he will eat these fine but we struggle to get him to eat things like toast/other foods on a daily basis.
• He wants to know what is going on constantly. For example, i call home, speak to husband briefly than to son. Son asks what did I say to daddy. He also cannot not go on the phone if it rings and I have been known to ask the British gas caller to just say hello for me. He also cannot just say bye, let me finish talking to my caller than hang up - he gets distraught so I have to let him say goodbye again.
• He remembers things we told him 2 years ago. He infact mentioned something specific last night about when we discussed a change of the house layout.
• He won't wear "new" clothes. The number of items I have that are brand new he will not wear and refuses to wear.
• He will say nightly that he wants supper, even after a big meal and I have asked him and said he needs to say yes or no. This is once he is in bed. He has to have supper. He can say he is hungr, have one mouthful then go back to bed.
• When he gets upset it's like 100% distress... not just tears. This morning we had a meltdown over getting dressed for schooll which involved sobs, tears, hyperventilating, banging the bed, screaming.
• He will say things like "You will break my heart if you...." when upset or "I will get blood if you...." in response to us saying no to him, or stopping him from something.
• He is very much 1000% with people or not at all. He can get in your face. School have had to speak to him about him goign up and holding onto his friends and I have had to say to him "Not in my face please" Or alternatively, he will not cuddle at all.
• I feel like a naughty teen if I get home "late" and he asks where have I been and tells me off.
• He constantly tells us what toys he wants when he sees something but to the extreme "I like that" I like that" can you get me that" please? ok arlight? almost like he needs to know we will say yes.
• he will say something, for example, "Sorry" which we will say OK and he will keep on "I'm sorry - I said sorry OK? I'm sorry"
• He says things like his mind tells him to be angry....

I could add more....

Sounds very much like my DS around that age, he was diagnosed with ASD when he was about 6 1/2.

I won't lie, it was a very long process, it varies depending on where you live but I'd expect the health visitor (or might need to see the school nurse as hes a bot older, our HVs stop once they start school) to refer you on to a pediatrician. It's unlikely that they would diagnose straight away as usually it has to be done by a team of different professionals, so expect a few more appointments. For us it was nearly 4 years fro me first speaking to the HV to getting a diagnosis.

However you shouldn't have to wait to get him appropriate support, school should be putting things in place to help him now, have you had a meeting with his teacher and the school's senco.

Talking to other parents has been the biggest source of support for me, and again most support groups understand there a huge waiting lists and will welcome you along while any assessment are happening.

Finally, pop over the the sn chat board on here where you'll find lots of people who've been through it.

What you are describing is not a behaviour issue, it sounds like sensory issues and a neuro divergent issue. Please stop forcing your child into clothes etc, hair cuts, etc . For you it's an inconvenience but to him it's very likely physically painful.

If you have amazon kindle unlimited there is a wonderful book about understanding sensory issues that addresses a lot of the problems you describe. My sons has spd and asd As do my nephews. It's fascinating to learn about and researching has really helped our boys come into their own.

Where about in the uk are you? I

@devoedtobitsandback
Please dont misunderstand. Hes gotten better as hes gotten older. He loves his barbers trip maybe once a quarter now hes older. I dont force him into anything clothes or otherwise. But said items come out if the wardrobe, he refuses and they go back away.

We made a big trip (to matalan!!) And he picked his own shoes, JEANS(!!!) and a top! I took a photo as it felt so momentous to me. Like the photo in his first shoes

We are in west Yorkshire.

Ive contacted school today and spoken with the inclusion officer. She is going to meet me.

The posts off you @devoedtobitsandback
And @gigglinghyiena feel like a warm hug that has been awaited for 5 years.

Also to note he stands on his room, away from us, "tucking in" his poo. He hates bowel movements. Had regular accidents until just before school and will not wipe his bottom for fear of getting poo on his hands

And if he does have an accident, he is inconsolable

The diagnostic process is very long sadly, so my advice is to start keeping notes and a diary. Make notes of when he finds things difficult, what they are, how they affect him.

In terms of supporting him, also keep a note of when he is upset about something (like the issues you've listed above), how he reacts, and what precipitated the upset or meltdown. You'll start to get a feel for what you can usefully avoid and then work on finding solutions to the things that you can't avoid.

You need to ask the school for support ASAP, as they don't need a diagnosis to support him. Also, go to your local authority website and look up 'Local Offer' (daft name, but there we are!). It will list everything you need to know about supporting children with SEN or disabilities (diagnosed or not yet) in your area.

You will also have a local parent partnership forum (funded by a charity called Contact) as every area has one. Not sure what it will be called (they vary) but all local parents in your area with similar issues and/or SEN kids will be there and they will usually have a secret FB page and forum where you can chat to local parents in the same position as you. They are incredibly helpful.

Go and see your GP to record your concerns, ask your school what they can do to help/support and start to keep a fiel for al letters, emails, appointments etc.

Keep your diary up to date, as you will be filling out endless referral forms along the way so the more information you have, about your sons day-to-day struggles, the better.

And lastly, a huge hug. It will be okay. You are not alone in this, and the community you find because of this will not only help and support, but literaly keep you sane. You and your son sound awesome - believe me, if I can do this (I'm ASD/ADHD as are both my kids and I'm a lone parent), anyone can. And yes, get yourself to the SEN boards here! Have one of these or possibly

@MrsToddsShortcut Thank you for replying. Ill give it a proper read later on.

I cant begin to tell you all how it feels to have someone not dismiss it. My husband is scared of our son being labelled i think which has caused his reluctance for some time to admit there may be an issue.

What actually happened after your children were confirmed ASD? Its not a magic wand approach i know but with help did things improve?

There are times i literally sit sobbing and worrying about him and how his life will be because his behaviour is so "bad" Then there are times like this morning where he has been an absolute gem. Husband has basically managed the morning and we have had no tears, shouting or upset. Hes currently playing lego whilst I'm gwtting ready and it feels like bliss

Although i know we are in a temporary reprieve

Sounds hard work OP

@May2020 Yes it is.

How did things improve for us after DSs diagnosis...... on the surface very little changed. We were given the option to attend a parents course (very good but another wait of a year or so). His school were already fairly supportive, and had some things in place to help him so while very little changed there, that was because it didn't need to.

However, it was huge for me, I felt that finally someone had belived me, it wasn't just me being for want of a better word a crap parent who couldn't get my child to brush his teeth, have his hair cut and all those other things we were struggling with. There was something more behind it. Naming that something more allows me to read up, to get ideas and to experiment with a bit more focus. Perhaps more importantly it also means other people listen that bit more when I tell them he will find something hard or a way to help him,

I felt able to go to support group and to access different things for him that pre diagnosis I didn't really feel we fitted.

Again I won't say it was a quick process, and there are still times I find it hard that some mainstream things just don't work for him (especially when it's almost viable if only a few things could be changed).

Your son sounds very much like our son in his early years. With the right education and the right support in place it does get better.

Having said that I try not to think how much of my life I will never get back, that has been spent fighting the LA to ensure my son got what he needed.

Sorry forgot to say our son was diagnosed with ASD at 7.

He sounds very much like my son who was diagnosed at 7 with Adhd with asd traits and sensory processing issues.

I’d been to the gp when he was 4 initially, not much done but then back again at 6, school and gp referred to Camhs and he was diagnosed about 9 months later at 7.

He’s had so much support from school and I’ve done so much work with him and he really has improved and matured over the years but the core additional needs are still there and part of him. You learn to work with it, they just see and learn things differently to others that’s all ❤️ Good luck with the appointment.

Maybe note down everything you want to talk about so you don’t forget and there are ADHD and ASD courses you can sign up to which I don’t think you need diagnosis for first.