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Hello....Advice needed please x

(21 Posts)
Cbreezy Wed 10-Jun-09 12:43:22

My friend told me I should join up so here goes.
My son saw the GP yesterday who pretty much said it looks like he defo has ADHD and Possibly Autism too.
Although in lots of ways its a relief to hear it, I am also feeling devastated and unsure of what to do next and also how it will affect my sons future,
He is now being referred to the pead but am told this could take months. He is due to start school in September this year so ideally would like it diagnosing before then.(If they are to diagnose anything)

So really am left hanging, and told to wait, but I am desperate to find ways to help deal with my sons behavior and also ideas and tips of what to try with him etc.
Any help would be fab. Thank you in advance!

wasuup3000 Wed 10-Jun-09 12:50:41

You may not get to see the pead until September at the earliest by then your son will have started school.
It is a slow process. If you need some advice though on dealing with your sons behaviour ect ask away I am sure you will get some great support.

lingle Wed 10-Jun-09 16:47:31

What sorts of things are hard for your son?

magso Wed 10-Jun-09 16:47:41

Welcome Cbreezy! I wish I had found this board earlier! My son is 9 so we have been through the diagnosis ( ds has autism ADHD and mod/sevLD). Hearing a knowledgeable person confirm our fears is devastating - although after all the chearful 'he'll grow out of it' comments from family it is a relief too!
Yes it can take a long time from first referral to diagnosis. Whilst the wait is frustrating there are things you could do as you wait. Are there any other appointments such as speech and language therapy (SALT), occupational therapy (OT) or hearing or eye tests you need to organise or request? You may want to request Salt assessment if you are concerned about communication or social communication, OT if child is oversensitive or undersensative to noise/touch/lights etc. ( The paediatrician is likely to request these if required but getting in first may save a few months).
Books are always a good starting point but some are better than others! The little book by ChristpherGreen (Understanding ADHD) is a readable book and usually available from the library.
Please ask as you need to ask. Magso

joylander Wed 10-Jun-09 17:05:35

Apply for disability living allowance asap, even if dont get it now will be able to back date to this date when you 1st claim, this amy help alleviate some stress, School need to be working with him are they doing anything?

123 magic is a good book cant remember author at mo good tips and time scales included...

Find out what schools can do tho help and make sure they do as much as poss and keep on top this is gonna get exhausting, without the evidence of school putting in work you will not get statement later on which he may need to get him through secondary.

catch up more later

joylander Wed 10-Jun-09 17:33:15

sorry just realised age is he at nursery? and starting mainstream? or starting nursry...
ps my boy is 8 and still finding out, yes system is slow, as saidby others you need to understand what there is out there get as much info from schools and cahms eventually, keep on find out what that can do and dont stop there if some thing in pplace for 3 months find out next steps.

joylander Wed 10-Jun-09 17:33:41

sorry just realised age is he at nursery? and starting mainstream? or starting nursry...
ps my boy is 8 and still finding out, yes system is slow, as saidby others you need to understand what there is out there get as much info from schools and cahms eventually, keep on find out what that can do and dont stop there if some thing in pplace for 3 months find out next steps.

Cbreezy Thu 11-Jun-09 11:09:19

Thanks for the messages.
He turned 4 yesterday and is due to start school in September, although GP and HV thinks he will be too young to start and wont cope...

A few examples of my son are: He dislikes buttons, zips etc, he is very hyper, doesnt like much eye contact, does understand what he is being told, has little imagination, struggles with social interaction, can hit/lash out for no reason, then think its funny.
Does not play well with other children, can be very rough and often play aside them, does not ask them to do something or talk to them properly. Does not grasp right from wrong, time out/naughty step etc have all failed. Will only talk about things he likes and struggles to maintain a conversation. Shows lack of care and respect for others. Finds it hard to 'play' games or with toys. Lines toys up, will repeat tv adverts, and is excellent with logos.
Seems hooked on playstation and will act out scenes and behave like the character(usually violently)
Will blurt out silly noises if asked a question, really difficult talking to him and getting him to do something..

I could go on, but I wont cos I am just totally drained of it all to be honest.
I am giving the HV a ring later to let her know how it went at the GP, and hopefully she will be able to help me in what I should do next.
Hearing tests have come back fine(He has adenoids/throat probs so was checked a while back) and sight is great.

Barmymummy Thu 11-Jun-09 11:22:43

Hello my darlin' ;o) GREAT to see you here! Just sent you a great bit long email. Everyone here is just wonderful, full of helpful advice and best of all a shoulder to cry on when you need it. Hope you are having a better day today.

Welcome to the board, xxxx

lingle Thu 11-Jun-09 11:22:50

sorry to hear things have been hard. Is he sleeping ok at night (as all the suggestions in the world for things you could do with him are going to be a bit hard if you are sleep-deprived).

Barmymummy Thu 11-Jun-09 11:24:07

big email not bit email...sigh, my typing as bad as ever. In case anyne thinks I am mad (hence the name) this is a friend of mine! X

Cbreezy Thu 11-Jun-09 12:05:51

He is sleeping OK at night now, although can have a tantrum before bed, and can wake up early, but yeah, that normally means I am tired all the time....

Thanks Barmy, Got it babe xxxx

TotalChaos Thu 11-Jun-09 12:49:20

Hello and welcome. Sorry you are going through such a worrying time. I'm quite cross at your HV/GP for being so little help re:schooling. Re:silly noises when asked questions - I wonder if that's because he's having difficulty understanding or thinking of the answer so is trying to buy time or change the subject?

I would call up speech therapy department yourself, see if they will let you refer, and also get his hearing checked out (it's a usual check with any language problem). Also call up the school he's going to start at, and ask to speak to head or senco so they are aware of the position you are in waiting for appointments and that your little lad is likely to need extra support. Also I would see if there are any ADHD or autism support groups locally, so you can get advice about how local system works etc as every area seems to have different waiting times, different names for the teams of professionals kids see etc.

jjones Thu 11-Jun-09 12:59:51

Hi and welcome, it can be a huge worry when someone says something is wrong with your child, I have 2sn boys 1 with adhd and 1 with asd so know what you are going through.
Just wanted to reassure you about school, by law a child does not have to attend school until the turn 5 so there is not the hurry you think. Try getting in touch with your local education dept and explaining the situation, there are people who can help with the transition and the quicker they are aware of the situation the quicker your little boy will get some support. I hope everything goes well for you. I think the worst bit about our kids problems is the time it takes to diagnose.
Try and get in touch with your local parent partnership, they will have a website, they are there for parents of kids with asd and adhd or both. I have found mine a godsend.

lingle Thu 11-Jun-09 13:46:11

So as you are tired all the time I'll go easy with the enthusiastic suggestions then!!!!

Re school starting: I will defer my lad (3.9, August born) for a year and start him in 2010. If there is any chance you can do this but have him in a really good pre-school next year then it's really important to consider it. The GP and HV should know whether there are precedents. Here in Bradford you can currently do it as of right but in future will need a letter from your speech therapist and paediatrician. It "can be done" even in LEAs that aren't keen - just thinking this would be a good topic to raise with the head - once you know when he has to start then you can decide on your first steps to prepare him IYSWIM.

Cbreezy Thu 11-Jun-09 13:57:04

As far as I know I can refer him so he doesn't start school till Jan 2010, but he will have to go straight into full days...So I really need to talk with the school etc and find out what they'd advise...

mysonben Thu 11-Jun-09 13:58:03

Here on MN you will pick up lots of info about behaviours,... the National autistic society is a good website, or try your local library to get books on ADHD/Autism spectrum.

My HV was supposed to do the referal to a paed for my ds last november because of concerns at home and nursery. I waited until early march , still no sign of an appointment ! angry

So i took the bull by the horns and when to my gp to hopefully get a referal from him. GP was understanding and said he will chase up HV and make a referal himself if it hadn't been done already. Three weeks later the letter for the paed appointment came. We saw the paed mid april.

It can be painfully long for appointments with paed, salt, senco ,... but don't give up and chase it up. wink

coppertop Thu 11-Jun-09 14:19:14

It sounds as though a referral to Occupational Therapy (OT) could be useful too. They can help with any sensory difficulties that your ds might have, eg his dislike of zips, buttons might be due to the way they feel.

Sometimes hyper behaviour can also be caused by sensory issues. My ds2 (now 6) used to be constantly running up and down, throwing himself against the walls, jumping off things etc as a means of seeking sensory input. One thing that really helped to take the edge of it was a mini-trampoline (the small ones with a handle) for him to bounce on.

The OT should also be able to help with other things to try. We were given a copy of this book and I've found it really helpful. I think it can be helpful even without a diagnosis of AS.

Barmymummy Thu 11-Jun-09 16:59:42

Did you get in touch with the HV today? xx

juliaw Thu 11-Jun-09 20:32:30

When you talk to school perhaps ask if part time would be an option? Also talk to school about what support they can put in place eg teaching assistant time. You could also suggest bringing him in late (when all the other children are already settled and the parents left) and picking him up early so there is a member of staff available to hand over rather than him being lost in the crowd, at least to start with. Do they do a trial session before the summer hols? My children went for a visit in July with their new class.

Cbreezy Fri 12-Jun-09 12:31:08

Barmy, I left a message so hoping she will call back today! x

Julia, if he starts in Sept then it will be part time, just mornings, he is meant to be having an open day/taster day sometime in July, so hopefully I will get a chance to talk to the teacher then.

My MIL rang me yesterday saying she'd found something on the net about a 'special' milk that is meant to help, or has been found to help..Ive not heard of this but she has gone full steam ahead and ordered some(like MIL's do)..Do any of you know about this?

Thanks x

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