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Is anyone else waiting for a diagnosis? We are and I am really scared.

(25 Posts)
bunny2 Wed 08-Jun-05 09:17:27

Ds, 5, is being assessed by the Ed Psych in 2 wks time. I ma not sure what they are looking for but his teacher has noticed a number of behaviours and incidents that cause her some concern. I am so scared there is something wrong with my little boy, I just want to lock the world out and cuddle him forever.

Fio2 Wed 08-Jun-05 09:21:30

just try to stay calm xx

anniebear Wed 08-Jun-05 10:04:42

I feel for you.

Wouldnt want to tell you not to worry........impossible, he's your little boy.

But just remember that whatever you may get told, he is still your little boy, he hasn't changed.

If there is something, it's good that it has been picked up on early and something is being done about it.

Davros Wed 08-Jun-05 10:26:19

Yes, it is great that the teacher has done something although I know you won't feel like that now. It will be a tough couple of weeks

sheepgomeep Wed 08-Jun-05 11:01:32

similar thing is happening to my ittle boy too so just wanted to say i know how you feel x

Hope everything is ok

coppertop Wed 08-Jun-05 11:02:04

bunny2. It's good that potential problems have been spotted early but I don't suppose it's much consolation for you.

jenkins88 Wed 08-Jun-05 13:40:58

I can so relate to the feeling of wanting to lock out the world and keep your DS safe. It's horrible waiting for assessments because you can't think of anything else. You spend half the time wanting to get it over and done with and the other half hoping the day never arrives.

Hope the assessment goes ok for you and DS. Good luck

RnB Wed 08-Jun-05 13:42:17

Message withdrawn

LIZS Wed 08-Jun-05 13:48:52

We started going through this just over a year ago and it was very hard. Agree with Anniebear, try to keep focussed on the fact that he is still the same little boy you love , noone identifying a problem or making a diagnosis will change that. Good luck.

KarenThirl Wed 08-Jun-05 18:30:33

Also remember that if there IS a problem, they can't help him with it until they identify it. They are on the case now and trying to help. Try to stay positive. And yes, he's still your little boy, same as he always was.

bunny2 Wed 08-Jun-05 19:42:57

thanks for your support, it helps.

I still feel very down about all this. I am assuming some sort of diagnosis does need to be made as they dont involve an ed psych unless really necessary. I really dont know what to expect though. What is the process? Will the EP make a diagnosis on the day? Will we be told of her findings (we have a meeting with her after).

Sheepgomeep, how old is your little boy? What's happening with him?

Socci Wed 08-Jun-05 20:17:30

Message withdrawn

bunny2 Wed 08-Jun-05 22:06:33

Hi Socci, thanks for your message.

The teachers concerns are:

Odd behaviours (he rocks back and forth from the waist up when excited and wiggled his stretched out fingers, also when excited)

Motor skills - he walked into a door, has trouble putting coat on

Often appears to be in a world of his own and forgets procedures for instance he doesnt take his coat off and hang it on his peg in the morning without being prompted (apparenty the rest of the class all do this now without being asked)

He likes routine (for instance, always wants to be at the back of the line when the class is queuing up.)

I dont think much of the above is unique to ds, I am sure other children in the class also exhibit their own idiosyncracies so I dont really understand why the teacher has picked on ds as such a cause for concern.

Merlin Wed 08-Jun-05 22:12:06

Oh Bunny - you didn't mention this last night. What a nightmare for you - I guess if there is a problem it's good that it is picked up on sooner rather than later, but agree with you about the teacher singling him out, when I'm sure other kids have their funny ways too. My DS likes routine and everything in it's place - I just put that down to him having my anal tidying habit!!!!!

JAKEJEM Wed 08-Jun-05 22:21:42

Hi Bunny2, so sorry you are going through this, we too are waiting a final assessment for our DS aged 3. He has provisionally been diagnosed with autism and we are devastated but the most helpful advice I have been given (which has also been said on this thread) is that to remember they are still our little boy's. They haven't changed and we will still love them exactly the same. I know what you are going through. You are not alone. My thoughts are with you. Nikki.

bunny2 Wed 08-Jun-05 22:40:29

Merlin, I forgot my troubles for a few hours last night (thanks to the rather excellent Gavi!!!) but my hangover is making it all seem much worse today!

Jakejem, I know he will always be my little boy, if anything this makes me love him more if that is possible. My heart just breaks for him, he has severe eczema, very serious food allergies and now this. I just wonder why his life has to be so bloody hard. It isnt fair. I cant stop crying about it today, I feel really weepy. Bugger.

TheRealMrsF Wed 08-Jun-05 23:04:19

BUNNY....your little boy will still be YOURS...and yes a label could be added to him...but he won't change!!!

I see having a diagnosis as positive as it gives you something concrete to learn about...and in time help him....

Far better that a child be seen as a 'child in need' than an "attention seeking so'n'so" (as my youngest is seen!

However ...i have 3 SEN boys...and have adapted and don't easily remember feeling as you do now...but i did feel like you feel...i was totally distraugh when Autism was hinted at 4 years ago for tom...but i found Mumsnet- and that helped me no end.

True enough...being told your child has a 'problem' is absolutely terrible...many of us liken it to a 'grieving' process...feeling like you have 'lost'the child you expected to have...but once you get past that...you do adapt...and 'IF' there does turn out to be a 'problem'...you will be on here in months to come helping someone out who is exatly where you are now!

I really hope you get the answers you need at the appointmemt....andf keep us informed.

take care!!!

bunny2 Wed 08-Jun-05 23:08:47

MrsF, I have just been reading your posts on another thread! Thansk for posting here. You are right about the grieving process, that is how I feel tonight. Soon we will have to come to terms with the diagnosis and life wont be the same again.

Philly Wed 08-Jun-05 23:08:57

We are of also waiting for a Ed Psych report on my ds(8) we have known for most of his life that his development was about 12 months behind but as he has got older we now feel he may need more support.Worse than this though is that we have just h I had an appointment with paed who is concerned that he may have a chromosome problem.Part of me is terrified another part thinks well he will still be the same little boy who I adore and at least I could stop feeling that maybe I did something wrong when he was little etc and just accept that these things happen.

Anyway I know how you feel,sometimes I just want to keep him close to me where he is safe and let the world go on without us.But that would deprive the world of my kind and gentle and smiley little boy and I think it would be a poorer place without him.

bunny2 Wed 08-Jun-05 23:11:13

Philly that's how I feel. My ds brings so much happiness to so many people. He is a really lovable and gentle boy. Has the EP seen your ds already?

Philly Wed 08-Jun-05 23:19:30

No not yet we are waiting for an appointment,also he does not react well to strange places ( the appointment with the paed was awful,she was clearly wondering how he coped in normal school but in fact he copes very well)so school have suggested that he has the assessment there so he will just think theres a new teacher!
Part of the problem is that he can be so different with different people according to whether he feels confident with them or not.He has made huge progress with his support tyeacher this term because he adores him,he loves his sessions with him and really looks forwrd to it,with his class teacher it is a different story,she is "pacey" her words not mine,he just thinks she is scary He only has her for one term so perhaps next term will be better.

sheepgomeep Thu 09-Jun-05 00:26:11

hi bunny2

My ds is 5, 6 in october.

Looking back I can see stuff starting when he was a baby and toddler

He would develop really irrational fears over silly things. Now I know most babies and toddlers do this. My dd aged 2 does but these were full blown hysterical shaking fits which were very frequent. He would go hysterical over his dad being in the house at bedtime. It would get so bad that my ex would have to go out for two hours every night just so I could calm him down. Strangley enough this suddenly stopped when dd was born and then he started to freak out when he saw me breastfeeding. (I couldn't cope and it was one of the reasons I stopped)

He started going to playgroup and appeared to settle in well there.. the staff loved him. He then started to withdraw a bit from joining in and became a bit 'rebellious'. He started to get very anxious about being left and in the end I withdrew him from playgroup (aged 3 and 1/2.

He got seen by the under 5's developement team (He was already being seen by a paed at the hospital because of an medical condition he's got (kidney reflux) He spent a lot of time in and out of hospital due to wee infections, scans, tests etc which may have affected him I don't know. The under 5's team said he has seperation anxiety issues but apart from that he's fine. hmmmm.

Nursery: Started well, got on well with staff and peers until after xmas term. He started to become 'obsessed' by a little boy in his class and would not leave him alone. he was constantly hounding this poor boy, wanting to touch him, stroke him, he would follow him everywhere, pull him about. In the end end his nursery teacher saw me struggling with him in the playground and getting in a state and told me to bring him in later after nursery had just started to avoid the issue in the playground, then they could control it from there which I did appreciate.

That wore off and then the obession with hoovers started which is an on going thing. He started flicking light switches on and off over and over again. He would put his hands over his ears if a lorry or bus passed him on the way to nursery, crouch against a wall and go uh uh uh until it passed.

He started school this year and everything seemed great. His obsessional behaviour seemed to wear off a bit and I though great! It was just one of those things. How wrong I was!

Last term the trouble started again. He became a little bit agressive in school, he bit another child and bruised anothers fingers. The only reason he gave was 'they talked in my face mummy' He hates people in his personal space, not me or his dad but other children even his sister sometimes. His concetration was poor although he is a good reader and is bright he won't sit still and flits from one thing to another. His teacher would have the others sitting down quietly for a story and he'd get up and start running around squealing, flapping his hands.He will not listen and will wonder across the road without looking He's not like it every day but a lot of the time. He's started getting a thing about lamp posts.

He loves computers, watching toy story (repeatedly!) and will only draw houses. He's stopped playing with the things that that he used to love like his cars and trucks which makes me feel sad. (he'd rather cut my grass and hedges with a a pair of scissors , spent hours doing that yesterday)

I remember being in the chippy the other week and he wouldn't keep still, then started stroking the walls. The looks he got....

The school nurse, his teachers and me are in agreement in saying there is something. Yes he's a bright, chatty, affectionate, helpful little angel BUT!!

My parents are in denial by saying oh theres nothing wrong with him.. it's my break up with my ex that done this (might have made him worse but the stuff was there before our break up anyway)When I press them more closely they do tend to reluctantly admit things that the'yve noticed about him.

bunny 2 I understand how your feeling. Its a scary thing. Have you noticed anything about your ds yourself or is it his teachers that have noticed it first?
In a way, for me it'll be a relief to get some kid of dx if it comes to it a;though I hope there won't be if you know what I mean. he'll still be my little boy whatever.

Your heart aches for them dosen't it.

Bloody hell I've rambled tonight.. I'm off to bed now I think.

Cosmo74 Thu 09-Jun-05 14:28:27

OMG SGM - your DS sounds like my DS too - the way he behaves in school although DS is not aggressive I would say that he has only hit about 3/4 time this whole year at school - to me that is normal 5 yo behaviour but the not sitting, lack of concentration etc...is DS his teacher first noticed this last September and we are still waiting for an assessment through the school have asked for one through GP too but that is another story - probably looking at 18 months waiting list there , DS too loves toy story 1 & 2 and could act in them both as all the characters... DS is 5 and we are still waiting for an assessment (long story)...does your child have a DX and if so what is it - that is if you do not mind telling me.

Take care

sheepgomeep Thu 09-Jun-05 20:44:03

Hi cosmo74

no ds hasn't got a dx yet. I think and the school does too that it may be ADHD but then again I don't know! The ball is rolling though but I dunno how long it will be. The school nurse said to me that because he is only in reception and isn't on the 'school action plan' then it may be more difficult to get the referral team to look at him. I'm a little confused by this to be honest. But it is possible and the school will keep pushing on our behalf.

Hope your ds assessment comes through soon. It's frustrating in the meantime. Lol at toy story! I keep trying to persuade my ds to watch something else but no he wants none of it


Bunny2. How are you today?

bunny2 Thu 09-Jun-05 22:14:22

Hi SGM

thanks for the detailed outline of your ds. I noticed a few similarities with mine - my ds also has irrational fears. He often refuses to get on a train because it is "too steamy" (a steam train!), "too pointy" (a virgin train) etc. His fears are quite unpredictable, something is fine one day and not the next!

Other things I notice are :

-chin-pressing (apparently many ASD children dig their chins into someone when giving them a hug, ds does this)

-toilet training - ASD children can be very hard to TT, ds still uses a nappy to poo in, he just wont sit on a toilet

-when he is telling me something, he often runs back and forth up and down the kitchen as if this movement helps him get the words out

-Ds will submerge himself in any water he can. During the winter when other children were splashing in puddles, ds woud lie down in them!

I feel a bit more hopeful today. When I watched him playing with friends he looked absolutely fine, he is popular, bright and happy. He is also affectionate and has a wicked sense of humour. I am hoping the EP says he is absolutely fine and we have nothing to worry about.

My biggest fear is that of a dx is made, it will be for a condition that worsens as he gets older. He functions perfectly well at the moment and although he is having a few problems with his reading, he is doing well and is very happy at school. I have read some threads on here which suggest that some disorders/conditions dont become too problematic till the child gets a bit older, then the problems really start - this really concerns me.

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