SEN DS - No one else wants to believe it

[Billynomateswontbemyfriend]

DS1 is 3.9YO and is not your average little boy (though lovely and very happy)

His speech was / is quite delayed (still often unintelligable)
He can't / won't hold a conversation he is not interested in
He has no concept of today / yesterday / later
he refers to himself in the third person constantly
He won't cooperate in any group setting (in all his life I have never managed to get him to a toddler class / playgroup / nursery without him doing whatever it took to get out of the situation)
he is scared of random noises (hand driers / hoovers etc) and covers his ears
We have had his hearing checked several times - never a problem, yet he often acts like he just doesn't hear you.
He has zero sense of danger and often actually 'goads' you - will run away, but if you run after him, he will run even faster... so you end up with a stand off where DS is too far away from to 'catch' him, but I know making a break for him will mean he runs in the opposite direction.

I could go on and on but I won't.

When I say he won't go to any groups:

1. he will rattle doors if they are closed, to try and get out (disrupting group)
2. He will just leave if doors are not closed (meaning I have to leave with him)
3. He will not do anything he is told or follow direction
4. He will scream / holler / shout if held in line / place
5. He made himself sick when left at nursery (figured out that sickness meant getting sent home)

We have been asked to leave many groups, and not encouraged to come back to the others.

DH, DM and DF (DS's GPs) all still to refuse there is a problem

He is very likely to get rejected from the prep school we had chosen for him and his brother which is very upsetting, though hardly surprising. I want to make an appt. with a psycologist but everyone else seems to think I'm causing this problem by keeping going on about it.

But, I've known for at least 18 months that things weren't quite right with DS1 and I don't feel it's helpful to leave it any longer.

How do you convince people / family that seeking to 'prove' there is a problem isn't a negative thing, but something that has to be done in order to move forward in the best way?

Ask your gp to refer you to a paed and take along the list of issues. Denial of any problem is very common and better either to rule it out sooner than later, or get help before he goes to school .

Hi Billy,

Your relations and DH may well languish in denial (common scenario re rellies) even given the above but it is not a luxury that you can yourself afford. You've known too that things have not been right for 18 months so it is indeed time you act now and decisively. Act inspite of them, hopefully your DH will come round in time but you may well have to accept that his grandparents may not. Not doing anything is frankly not an option.

At least you now want to act and the best person to see will be a developmental paediatrician (NOT a pyschologist). Your GP can and should refer you to such a person asap. Film your child playing at home and take along the list of behaviours you have written above.

I would also post this in the "Special Needs: Childrens" section as that particular forum receives far more daily traffic than this one does.

Forget the prep school for DS1 altogether and save yourselves the heartache. I would instead look at other state schools in your area; a good and caring nuturing (so not just focused on academics) state school will do your DS far more good than a private prep who may well not want a child with special needs in it and use that excuse to bar him entry. Also such schools operate outside the LEAs remit. Longer term you may want to apply for a statement of special needs for him re his educational needs in school; infact I would look into that sooner rather than later.

www.ipsea.org.uk is a good website and has lots of information on it.

Make an appointment with GP to get a referral to developmental paediatrician (if possible the CDT team (child development team).
Please for your child don't ignore these symptoms; the sooner you get appropriate advice from NHS the better; he may have a all lot of problems that affects is behaviour and that he can't tell you about. If you have enough money to consult an occupational therapist, then see one.
What you could do as well is asked for statutory assessment at nursery to the LEA and ask Parent Partnership to support you in the process.
I went through that process; it is never easy to accept there is a problem, and yet it is the best you can do for your little angle. And in any case, even if they actually find that there is no problem, then at least you will have ticked all the boxes.
All the best

Follow your instincts, Billy. I was concerned about my son from an early age. I thought he had Tourettes from the age of about six because of his multiple tics, but none of the professionals would accept it. One counsellor at CAMHS asked me why I wanted to 'medicalise' my son. We were treated like overanxious, overprotective parents who needed help with our parenting skills. It took me asking for a third referral (by which time DS was not attending school at all) for someone to finally recognise and diagnose his special needs. I have to say that, in my experience, it was the psychiatrist who helped, not the clinical psychologists.

I have lost track of the relatives, teachers and professionals who told me - or hinted - that I was worrying about nothing. I wasn't. DS has Tourettes, OCD and social anxiety.

The earlier you get help, the better.

Oh, and try to grow a thick skin! For some reason, people always seem to think the child's special needs are the mother's fault. I used to be in tears about that regularly, but one day I thought it through: I was loving, I had established boundaries of acceptable behaviour for my son, I disciplined him (kindly), he had lots of loving attention. I did not let him run amok whenever he wanted, which is what some people thought when they witnessed his less than perfect behaviour. But this boy of mine had multiple tics, he had terrible rages, he was violent towards me, he was disruptive at school, he was excessively anxious about situations that 'normal' children didn't find threatening. How could that be my fault? Once I had accepted that, other people's views didn't bother me so much anymore. And now he has a diagnosis (although that took six years) it has all changed. I get lots of people sympathising with me and saying how wonderful I am to cope! It makes me smile as it's sometimes the same people who were so critical a few years ago .