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ADHD - diagnosis when/how...and then what?!

8 replies

clare40 · 20/07/2012 11:01

I strongly suspect my ds (nearly 5) has adhd, I have thought this for a long time, but his nursery and his reception teacher have told me he is just immature. He goes to a school which is notorious for not recognising SEN. I wish that were the case but watching him in assembly today needing constant support and reminders to sit appropriately (where as none of the other children needed that!). But, it's not just that. He is so loud and can never just play EVER - he can never just concentrate on anything. He doesn't really have friends, and seems to enjoy annoying other children.

So, anyway....here I am with this suspicion, in which no one is really listening to me. OH won't hear of it!

Please could you help me by answering a few questions:

  1. When and how did you get a dx? How long did it take?
  2. What age was your child?
  3. Who made you think there was a problem? Or did you know?
  4. Has a mother ever been wrong with their suspicions?
  5. After dx - what treatment or support did you get? Has it been successful?

Thank you so much in advance. xxx

OP posts:
clare40 · 20/11/2012 22:24

Was wondering if anyone could help?

OP posts:
AnniDoesHaveDreams · 20/11/2012 23:44

Sadly I allowed myself to be fobbed off by well meaning friends and family when I raised my suspicions about my DS. I firstly raised my concerns over his aggressive behaviour when he was about 2 with the HV. I found him very difficult to cope with even though I had two older children. I sent him to nursery, he was not an easy child and our family life became very restricted in terms of taking him anywhere but no-one raised any significant concerns even though he was always in trouble. It all came to a head when he was in primary school where again he was always in trouble and I spoke to the Family Liasion Office and it was through her that I managed to get a referral and DS was eventually diagnosed with ADHD, autistic tendencies (mainly social interaction) together with fine and gross motor skills problems. I blamed my poor parenting skills even though I had no problems with my two older DDs but guilt ridden that I had allowed myself to stick my head in the sand and hope that he would 'grow out of it'.

DS is now medicated which on the whole keeps him reasonably calm and he attends a mainstream secondary. He will always be challenging and school will never be easy for him, (or me). I take one day at a time and enjoy the good days and hope the bad ones pass quickly.

madwomanintheattic · 21/11/2012 05:21

Just before he was 10. Now medicated.
He's v little to be picking up a dx if nursery and school say he s within normal parameters - usually it's more like 7 or 8 when they can't use the maturing line any more and the differences between them and peer group widen.

Lots and lots of yr r boys struggle with assembly and carpet time.

I would leave it for a while and see what happens. If you are convinced, you could ask for paed referral, but he seems to e within normal 4yo expectations?

They don't usually medicate until at least 6, except in v severe cases which he is obviously not, so you have another year or so before a doc would offer that sort of support.

It does take some kids a year or into yr 1 to really grasp the boring sitting down stuff.

In the meantime you can be reading around. ADHD unless v serious and causing problems with peer group, is not usually well supported in school.

ChristmasTreegles · 21/11/2012 07:46

We were also fobbed off for about 2 years by GPs. We repeatedly pointed out developmental concerns starting around the age of 2, and GPs poo-poo'ed them with the whole "children develop at different rates" and "boys are often slower" nonsense.

Finally at 4yo, when he entered reception, within 3 days, we were given a meeting with the SENCO, who then coordinated everything for us, including getting us in touch with the school nurse who got us a referral to the paediatrician, as our GP refused to do this (long story, but suffice it to say that she is no longer our GP Hmm).

We had a tentative/working diagnosis within a few months, however, not a solid one until June his reception year, so roughly 9 months from it being picked up by school. He received his statement about the same time, although the school had put FT 1:1 in place right at the beginning of the school year when they realised he had SNs. He was almost 5yrs old at the time. We were quite lucky - we had a brilliant school that was very proactive and helpful. We have a paediatrician and OT who are very happy to be involved in his school progress (attending meetings, speaking to teachers if they have questions, visiting the school) and are equally happy to answer any and all questions we may have..even by email, so we don't have to hunt them down by phone. Everyone worked together to get his statement sorted quickly, and although his statement was a tad woolly, I wasn't worried, as his MS school went above and beyond what was required by the statement.

As far as support is concerned, we did have to fight the LA to get him into the local specialised school, but thankfully the paed, MS school, and OT were very supportive and the LA finally gave in after a tribunal date was set. The move to the SS has been wonderful - other than a few blips, he has been coping so much better with the smaller class sizes and activities/lessons geared to his level/attention span.

His paed meets with us every couple months - to check on his progress in general, how he is doing in school, how we are doing (and coping), to see if we have any concerns.

His OT meets with us whenever needed - she has (over the past 3 years) organised window locks on all our windows, a stable door for our kitchen for safety reasons, new fencing in our rear garden so he has a safe place to play, a Mac Major initially and recently a wheelchair (needed for when we go to busy/crowded places or places where a lot of walking is involved as he cannot cope with lots of people due to sensory issues, and while he is unbelievably hyperactive, cannot cope with long bouts of walking - possibly due to his dyspraxia). At this point, we email updates to her and if she (or we) have any concerns, then she arranges to meet with us - she will pop out to our house at the drop of a hat if we have any problems. She is an absolute star!

From an organisational standpoint, we haven't had any kind of support in that respect - no carer meetings or anything like that, although I think there might be some in the area (not sure). Most of our support has been down to extremely good paed and OT, and then his SS - they have carer meetings, and his class TA does support work, so we have her mobile number for if we ever need anyone to talk to about things. I guess what I mean is that we have had individual support - not NHS directed IYSWIM.

I will point out again that we have been extremely lucky thoughout this process - I know loads of people that are fighting for every little thing, and I feel so badly about that.

clare40 · 21/11/2012 20:16

Thank you so much for your replies. I do appreciate it and I will read all replies again. I originally posted that topic in the summer, obviously now in yr1, and definitely no improvement! His constant hyperactivity is really getting me down as he is so impulsive with it, so I can never be sure he is not bothering his siblings or in danger.

School is still saying wait and see, so I guess I will give it another 6 months, so he is closer to 6yrs old before I meet the professionals. When was medication discussed with you?! On a bad day I can't help but think about it!

OP posts:
ChristmasTreegles · 22/11/2012 07:57

Clare - I'm sorry, but are you saying you haven't taken him in to paed to be assessed or anything yet based on your school's say so?

Please PLEASE ignore your school and take him in now if he is struggling (or you are). The route to a statement (if needed) takes well over 6 months, and that is if it goes smoothly!! And diagnosis may take awhile too - the longer you delay, the longer it will take for him to get appropriate support. Schools will often tell you to delay or that it's not needed. But honestly, what if it's not just ADHD that is causing the problems? DS2 has some massive sensory issues as well as other things (dyspraxia for example) and while ADHD is part of the problem, there are other things at work there as well. Nobody but a paed (or CAMHS professional if they do the dx's in your area) can give you a diagnosis. Particularly not the school professionals! If your child was ill with a high fever and the school told you to wait to get him checked, would you listen to them? Why listen to them when he is showing developmental problems? They are not medically trained at school, they don't have the authority (or the knowledge) to tell you to wait to have him seen.

Getting on that track through the medical community will get you in touch with professionals that can not only work with him, but also support you!

DS2 is in year 2 now, and in a specialised school. The process to get him there literally took most of year 1 to organise (and fight with the LA). Having the backing of his paed and OT was a big part of why we succeeded.

Once he really starts struggling, it'll be a good year from then before a statement would be in place - and in the meantime, it'll be a lot of time wasted without appropriate support. Is he getting 1:1 in school now? What support are they providing?

Medication was discussed with us quite early on (while DS2 was still 4), however due to a family history of specific medical problems, we've (us and the paed) decided that certain medications (ritalin, etc) are not safe for DS2.

Allonsy · 24/11/2012 14:05

Clare40. If your really concerned i would say get a referal now. Ds is 6 too and always been hyperactive, worryingly so. At 4 nursery suggested ADHD there was always a wait and see approach as well, hes 6 and a half now and ive had to push for referal myself and that wait and see line keeps getting trotted out even still. He will likely be 7 before hes seen and i wish id done it earlier as his behaviours are less obvious now but still apparent to us.

Billyjoe10 · 01/09/2019 22:05

Hi OP If you're still on this board! Just wondering if any update on how things worked out /working out for you and your son? I know it's an old thread!

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