I think DS has ADHD. Is there any advantage in getting a DX?

[FamilyCircus]

I'm in a bit of a mess here, so please bear with me.

Bit of background: DS (9) was DX'd with ASD when he was 3. This was after only 2 appts. with a paed. who we never saw again. No other health professional or teacher has agreed with the DX since and it was more or less dropped when he was in Reception year school.

I'm not in denial, he does have some issues, but I don't think ASD fits at all.

He hated school and wasn't learning at all so we took him out 2 years ago. He's done quite well since then, made really good progress with his reading and speech, but in some areas I feel he's almost gone backwards.

I know HE is a contentious issue sometimes on here, which is why I've name-changed. We removed him because we (including DS) couldn't cope any longer with his behaviour at home after having to conform all day at school. I'm not up for a debate on HE vs school - we just did what we thought best at a very difficult time.

His handwriting is a major problem. I would say he is at pre-school level with regards to pencil control and ability to organise his writing. I can barely read anything he writes.

For the first year of HE we really let him do his own thing. His confidence was badly damaged and it was important for him to feel secure. During the last year though, I've been getting really worried about whether he'll ever progress. He hates drawing/writing/colouring and I'm just so tired of encouraging and nagging him to try. I sit at the table with him while he messes about dropping pencils on the floor, playing games to decide with colour to pick up and just generally wasting time. At the end of each session I am extremely pissed off.

Whatever activity we do seems pointless. It seems like he just doesn't care but when I tell him off and try and get him to knuckle down he gets very upset and I'm sure he genuinely is trying hard.

Today we were using plasticine and I was trying to show him how to squish and squash the material and roll it into balls etc, and I just had to leave the room in the end as I was so frustrated. What he created was just a mess; it was a 2 year olds mess! And he was proud of it and wanted me to praise him. He had made a plate with food on but he hadn't moulded any of it or chosen colours that represent the foods. So it was just a lump of colours wedged together and didn't look like anything except plasticine.

God, I'm writing this and I think I sound like I'm expecting too much of him, but I'm not. He can read brilliantly and do quite complex maths in his head. He can ride a bike really well and has a good vocabulary. I feel like he's just winding me up all the time, but I know he's not that kind of child.

I've been reading up on ADHD and the description fits him. I think I ought to see our GP about this but I don't want to do that if it's just going to lead to him getting another label and no help. Our experience of him being DX'd with ASD was just awful. I'm sure a lot of professionals thought I'd manipulated the situation in order to get DLA, but we didn't even apply for it. He wasn't even seen for a year after his DX and the pead. basically asked us what we were even doing there as he plainly was not on the spectrum. I cannot face another repeat of that.

Sorry, I just wanted to rant and be heard. DP is lovely but very happy to just ignore problems that can't be solved easily. I'd appreciate any thoughts/advice.

Oh God, that was so much longer than I intended it to be.

I am guessing that your post being longer than you intended it to be is reflective of how worried you are about your ds atm.

My ds2 had a dual dx of (hfa) and adhd and what you are describing to me sounds very much like my ds - in terms of adhd.

I understand that you are home schooling and he is obviously a bright lad. Concentrating and writing skills etc sound very familiar as does your worry and frustration.

I do think it is worthwhile pursing a dx, I hope that your experience is different from the asd dx. There are two main reasons why I think it's important, first of all it provides you, him, family members and professionals with an explanation for his behaviour/difficulties and as he becomes older an explanation could be vital for his self esteem. Also you may not wish to home school in the long term (no debate, sounds like you're doing a great job) and having a dx may assist you in getting supports for him - for that as well as in general.

My ds is currently doing an ' intervention project' he's learning all about adhd, impact, self esteem and he loves it!

Think my post is probably as long as yours!

The "immature artwork" ie plasticine - might also come under dyspraxia as would hating drawing/writing/lack of concentration.

It sounds awful that you have had so little intervention/assistance following a DX

Thanks both of you. What a relief it is to express how awful I feel and get feedback. You don't get that in real life!

Hope I didn't sound touchy about the HE situation. Truth is I feel responsible for his difficulties because I've made myself responsible by virtue of removing him from school. I feel like I have failed him and also I feel trapped into continuing this because how on earth would he cope if he went back? He is terrified of going back!

Ben10, I'm pretty sure my sister has dyspraxia, although when we were kids we called it 'clumsy child syndrome'. She was never formally diagnosed and has had a very shitty life. DS is soooo much like her . My mum talks about how my sister was a perfect child up until she started school and was expected to conform - it is all so familiar. DS is happy, loving, gentle, kind etc, but extremely awkward.

HelensMelons, I do think he would benefit from having an explanation as to why he has difficulties. Are there any services that he might be able to access to help him? Is your DS doing the intervention project through school?

Thought about dyspraxia as well, it could also be impacting on his handwriting - you mentioned the plasticine as well, wonder does he have trouble using a knife and fork, is he a messy eater?

It's pretty normal to feel guilty, blame yourself, wonder what you've done wrong (I could go on, and on!) have been there and occasionally dip a toe back there. However, your ds would have these difficulties whether he was HE or not and quite clearly the school he was in was more damaging than helpful so you've acted in his best interests and tried to be protective and that's part of being a good mummy so don't be hard on yourself.

If you are considering at some stage a return to school, the dx would be important for his needs to be met. Identifying an appropriate placement for him and phasing him in would important but it's small steps, working towards re-integration if that's what you ultimately want for him and you won't be working in a vacuum, hopefully the school would support you.

Oh and finally! We attend an adhd charity, it's a 6 wk course but I live in NI. An organisation called Contact a Family might be able to help you x

ADDIS, Cerebra, or Dyspraxic Foundation also (can't do the link thing sorry!)

I think the motor control issues sound like symptoms of dyspraxia - and he needs to be assessed by an OT.

I think HE sounds exactly right, and I've never seen it as a contentious issue here on the SN board, so please don't feel defensive about it (here or in RL)

Also think you need to go back to a paed and get him reevaluated.......

Cutlery co-ordination is not happening HelensMelons. DS uses a food to stab food, but he can't cut do the stab with fork and cut with knife action. He's not that messy an eater, but I suppose I do cook foods for him that he can eat easily. This has been nagging at me for a while actually. I know he needs to learn how to use cutlery properly, but dinner time is when I really need a break from the frustration of teaching him things. I always give him a knife and fork and he always tells me that he only needs the fork - the clean knife goes straight in the dishwasher after dinner. Perhaps I should try getting him to practice cutting up play doh or something?

Shoe laces, zips and buttons are another problem. We gave up with laced trainers when he was 7, but velcro fastenings are getting harder to find as his feet get bigger. I just can't see him ever getting the hang of tying bows. Trying to keep his attention long enough to show him leads to me getting frustrated and angry with him.

IndigoBell, thanks. I've not seen a thread about HE on the SN board, but there have been a few bun fights over it on the other boards. People don't say much in real life; my family are fairly supportive and DP's family are quietly disapproving, but it doesn't bother me really. I think there are lots of families in the HE community who took their child out of school, not because of ideology, but because they couldn't bear to see their child so unhappy. These children may have underlying issues, like DS, and people who don't know better think they are slightly odd as a result of being 'isolated' from their peers. Sometimes I like to get involved and say my piece, but I'm feeling a bit fragile at the moment. Actually, most posters who think that way probably haven't opted in to the SN boards anyway, so they won't even see this.

Have spoken to DP about DS being re-evaluated and he is against it, so no surprise for me. He wants to have a couple of weeks 'trying very hard' to help DS catch up, and then, if we haven't made much progress (which we won't) we'll start the ball rolling. I am happy with that arrangement as I don't feel up to it yet. It's going to be very different having a 9 year old assessed than a 3 year old. DS doesn't even know that he was DX'd with ASD.

HelonsMelons thanks for the organisation suggestions

He does seem to have a lot of the dyspraxia symptoms then FamilyCircus.

The OT has told us to buy Caring Cutlery.

I also found these shoe laces for when DS no longer can wear velcro. Triathletes use elastic shoelaces so nothing specially "disabled" about them which is a selling point!

The assessment that we have had so far was for gross and fine motor control and we are pushing to get a sensory assessment - still no DX, just recommendations for the issues noted so far. The assessment itself was done very well with no stress as we just told him that all children need to go for these checks and he thought it was all good fun. Whether it will be the same for you with a child who has ASD I don't know.

Oh I like those laces Ben10. Not sure I understand them properly though. Do you tie them initially and then you can just slip your foot in and out because they are stretchy, or do they grip without tying? Will be ordering the cutlery as well.

Part of the problem with DS is he really lacks enthusiasm, which possibly contributed to him being DX'd with ASD. It's very hard to teach someone something if they find it difficult, can't pay attention and have no interest anyway. I can't think of any milestone he's reached that hasn't involved me insisting that he is ready to do something and forcing him to get on with it. Walking, potty training, getting dressed, reading, practically everything.

How old is your DS Ben10?

It does sound as if your DS has some sort of motor planning issues, FamilyCircus and, like others, I would suggest going for an OT evaluation. My eldest has ASD and ADHD , but his ADHD is primarily of the bouncing off the walls and downright defiant type. His OT has observed motor planning difficulties which are present even when his ADHD is controlled.

I had them when I was a teenager but haven't bought them for DS yet as he only 5 and is only size 12 shoes so a long time left in velcro! You don't tie them at all. You just lace up and then the curly bits grip the foot at the correct tightness.

Part of the problem for me was realising that DS was going to reach the milestones later than others ie. getting dressed. I used to say "jacob you are 5 years old, you should be able to put your trousers on the right way round by now.....why haven't you got your socks on yet, I've been asking you for 20 minutes, you are a big boy now". These children find things difficult as their motor skills are not developed enough and they also lack the focus to keep on task. Either way it is not going to help them complete the task.

Not questioning your decision to HE at all but I know that I would not have the patience

Yes, ds lacks focus and is very easily distracted so lots of prompting (sometimes a bit of a shout tbh) to get things moving in the morning. An OT assessment would be invaluable - we had one, had a block of OT and it helped with all sorts of things - ds can now use a knife and fork pretty well for example.

Ha, patience is not a strong point of mine either Ben10. Had school been more supportive we never would have contemplated it. I made my decision when his teacher told me that he was 'like a little victim' and then told me about her DS who was bullied right through school and then, for good measure, suggested that it might be the same for DS. When I told them to de-register him they offered to bend over backwards to support and accommodate him and to be honest I felt like saying "fuck you, you've watched him struggle and suffer for 2 years. I might not have the skills and resources you do, but at least he'll be happy and safe at home". I didn't say anything like that of course. I should have looked at changing his school first but I didn't have the heart for it.

Thanks for the info on the laces.

Ouryve, thanks for posting. I'm recognising now that ADHD is probably wide of the mark for DS. Maybe he's not paying attention because he lacks confidence and wants to escape my nagging. DS is not at all of the bouncing off the walls variety; he needs a rocket up his backside if anything.

That sounds good HM. I do resort to shouting as well. I don't feel good about it, but it's an effective way of breaking through what ever is distracting DS and getting him to receive the message I'm trying to give him.