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Sudden worry - am I doing the right thing or making things worse? Possible Aspergers

(6 Posts)
Happysea Tue 26-Apr-16 10:33:54

Hello
I apologise in advance for a long and rambling message. I am not sleeping well and am all over the place with worrying about whether or not I am doing the right thing by my son.

He is 8 years old and since a very young age my husband and I have felt he has shown signs of Aspergers but we were managing it at home and there were no obvious signs of anything unusual at school. Although it was exhausting for us dealing with the melt downs at home, we accepted this was our little boy and we worked with it.

6 months ago, an event happened at school which I can't go into detail with as an investigation is still ongoing. It resulted in a huge rise of his anxiety and everything that we have experience at home started very suddenly to appear in his every day school life. If I 'google' aspergers - he is a classic fit. However, having brought this up and put into place things with the school to help with his horrendous anxiety I am now terrified I have started an unwanted ball to roll.

We have been seeing the doctor who recommended a CAHMS referral which I completed as did the dr and the class teacher. The referral came back saying he needed to see the school nurse for 6 weeks of therapy before they would see him.

I arranged for this to happen with the school nurse but due to funding this has only happened once every 4 weeks and we have only had 2 sessions which I feel is not consistent enough. I arranged private play therapy through a qualified therapist I know and trust and he is now having this at school (though funded by us) every week. He is also having ELSA support with a TA.

I met with the SENCO last week and mentioned my thoughts about Aspergers. She is highly qualified and I really respect her opinion. She said she'd had thoughts about this and thought a referral to a Pead doctor at the hospital would be worthwhile. Our doctor also thinks this is worthwhile. The SENCO has done a detailed assessment which is spot on and is exactly what my son is like but it all just seems to stark on paper. I am worried that with all this intervention, things could actually get harder for him rather than easier? I am worried that I am 'making' things worse than they are. But on the other hand I had to take three weeks off work to get him into school in the morning so it's not as if the problems aren't real.

I was a primary school teacher until 2 years ago so I am very informed with how the process works and have helped other parents go through this. But it is so daunting being on the other side.

I come from a family where mental health is seen as 'made up' and have been told that he just needs to toughen up and stop being a wimp. They think all this intervention is going to make him feel isolated from others or weird. Obviously I have stood my ground and tried to inform them but there is still a niggle in the back of my mind that I am pushing too hard for a diagnosis - despite all medical/teaching professionals so far agreeing totally.

I don't even know what I am asking really. Just whether there was anyone with any strong feelings one way or another or anyone else in a similar position. I don't want to 'label' him for life if I am just being over the top - but on the other hand it is clear he will need extra support throughout primary and secondary school. Please help! And thanks if you have got this far!!

Ineedmorepatience Tue 26-Apr-16 10:42:03

It sounds to me as if you, the GP and the senco are all singing from the same song sheet which is a great position to be in!

I would go with the paed referral and trust your guts! You woukd be amazed at the number of people who have come on here thinking that there is an issue who go on to get a diagnosis for their child, go with your gut instinct!

No one will diagnose your son unless he meets a criteria for diagnosis and it could take a long time for you to work your way through the system.

Good luck flowers

AugustaFinkNottle Tue 26-Apr-16 11:05:41

I really don't think intervention will make things harder for him, and it seems to me that you are right to follow the SENCO's advice and paed referral. Can the SENCO do something about speeding up the nurse therapy?

zzzzz Tue 26-Apr-16 12:18:45

He won't get the diagnosis unless he has the condition. Trust me, it is not the easy "labelling" exercise that you may have bought into on some level (like the rest of the observers). The criteria is rigid and unbending. You fit it and get Dx or you don't.

If he does Dx will help him fulfill his potential.

Be calm and give yourself a stern talking to. Our medical diagnostic process is recognised for its rigor throughout the world.

LonnyVonnyWilsonFrickett Tue 26-Apr-16 12:25:05

You used to be a teacher so you know that your son needs the intervention to help him reach his potential. Don't lose sight of this fact.

Your family aren't making your path easy for you and that's a real, real shame. You also have your own emotions to deal with. But these aren't linked to what your son needs - they are separate issues to be dealt with (or not) in the fullness of time.

I know it's tough. I know it's especially tough when you're getting negative messages from the people who are supposed to support you. But that's not your battle right now, your battle is getting the right help for your son.

(My favourite response to the 'labelling' thing by the way, in case you find it helpful, is to say 'In the first few years of DS life he was 'labelled' as weird, awkward, lazy, and unable to concentrate on anything. Other children in his position have been labelled troublemaker, thug, stupid, feral, unteachable. Would you prefer one of those labels for him, or are you happy to stick with 'autistic'?)

Happysea Tue 26-Apr-16 12:55:15

Thank you for helping me look at things clearly. Lonny - you are right, the family members are a separate battle and not one I want to address at any time or have the energy to address. It would never make any difference. In my heart I know the intervention is helpful for my son - I just had a morning of being told otherwise and panicked. Thank you everyone for your advice x

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