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Assessment Outcome This Afternoon (I Think :/)


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#1 Poppet

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Posted 13 October 2015 - 11:20 AM

My son (10 yo at the end of the month) is receiving his assessment outcome today. Well, I'm assuming that is what it is, as our appointment letter said "medication review", and he has not yet had a diagnosis and is on no medication.

I have to admit, I'm in a bit of a bad way.

I've been trying to get him assessed for about 6 years. We have had social services, occupational health, educational psychologists, pcamhs, camhs, sencos, and goodness knows who else involved in every step of his education, and I'm exhausted.

For so long, we have been fobbed off, as my ex, my son's biological father, was violent towards me (he never hurt my son, for which I'm forever thankful). The abuse ended when my son was 2, as my ex received a life sentence for it and is not allowed to see us, even though he's out of prison now. The problem is that every specialist I saw read the letters 'DV' in his file, and put all of our issues down to that. I can't count how many times I heard, "children who witness domestic violence often have trouble adjusting after the abuse ends, and it just takes time and a stable environment for them to catch up with their peers." They usually followed this with the ever-condescending, "it'll be just fine."

My son struggles with eye contact, lists of instructions, social norms (he loves to play with other children, but they find him very intense and end up quietly phasing him out of their games. He also constantly interrupts, and will change a topic to something completely unrelated and get frustrated that no one knows what he is talking about), he gets obsessed with things, and they will take over every waking minute of his life if we let them. He also has no awareness of danger and is full of energy, which is actually one of the hardest things for me to deal with, as I have limited mobility and can't always get to him in time to prevent an accident. On top of that, we have had toileting issues, and he will soil himself when he is upset.

My problem at the moment is that I'm terrified of both potential outcomes. If he is not diagnosed with anything (though we have several specialists suggest high-functioning autism and adhd), how do we continue to cope? Without a diagnosis, there is very little support for my son, myself and my (non-violent!) partner, and the school. We tend to get 6 weeks of support from OTs and social services, patted on the head and discharged every single year. And never the same one, at that! We can't keep going on like this, as it's not good for any of us.

On the other hand, I'm terrified of a doctor handing me a statement of sen, a bottle of pills, and saying "here you go. This will make everything better. Go and get on with it." I'm also worried about how my son will cope with being told "this is what is wrong with you." We have already had issues with a young carer group he attends due to my physical disability, who said that they are concerned about having him because it is supposed to be a break for young carers, most of whom have siblings with asd/adhd/add. He was bullied by some of these kids during a trip (they hit him with a strap and ripped his favourite jumper, the latter of which made him inconsolable for days) so he hasn't been back to that one, but I'm now worried that he will no longer be welcome to any young carer group if he is on the autistic spectrum, despite the fact he has to help me quite a lot on a day to day basis with little bits he is safe to do around the house.

Either way, at the moment I feel like I'm stuck between a rock and a hard place, and I can't stop crying. I'm wondering if I have done the right thing in fighting for this assessment. Either way, there is potential for him to not have the support he desperately needs, and we have managed so far with changes to his diet, extra exercise and post-it note reminders stuck all over the house, it just doesn't always seem to be enough.

Does/did anyone else go through this level of anxiety before diagnosis? Am I over thinking things and panicking because we have had to fight so hard for this, and I might be wrong? Is it supposed to be this frightening? I feel so lost right now.

#2 imperfect parent

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Posted 13 October 2015 - 02:22 PM

 You have had so much to deal with for so long and often it's when a potential end is in sight that it all becomes too much.

 

What ever the outcome of the assessments you will have the sane child at home with you.

 

Even without a diagnosis you may be able to get help in school for him.  Keep posting here and we'll help you through the hoops. 

 

See what this appointment brings and then consider your nest steps to get the support you all need.



#3 Poppet

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Posted 13 October 2015 - 08:16 PM

Thank you. They diagnosed him with ADHD, but have said they cannot diagnose ASD until they have spoken to the Ed. Psych. and Communication and Interaction team due to his complex past. They did say, however, that he is definitely showing traits of ASD, but they want to be very careful with the diagnosis as if they get it wrong the treatment they give could make his symptoms worse.

They have offered medication for the ADHD, but I'm a bit reluctant to start him on anything like that, at least until he is discharged from the assessment team. I don't know if this is the right choice, and I'm going to research it, as they've told me I can call if I change my mind, but medicating him before we have the full picture doesn't make sense to me. To be honest, I'm still trying to get my head around everything. It's all so confusing.

#4 imperfect parent

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Posted 14 October 2015 - 05:55 PM

My own knowledge of medication is limited to anti anxiety meds.  I have a friend whose son is now 20 and was DXed with AdHD at 4.  She was not keen on medication, but found a compromise in giving ritalin for school hours, and managing time at home without the medication as much as possible.  Occasionally her son would ask to stop the meds, but soon realised how much more trouble he got into in school.

 

I'm not aware that any management for ASD is detrimental to children with no difficulties; the time that ASD friendly management isn't appropriate is with those who have PDA.  that said I'm not an expert, but  it might be worth you having a look at PDA (pathological demand avoidance)  Others on this site have a wealth of knowledge if you think it might describe your son.

 

Try not to think of ASD/ADHD as something wrong, look at a DX as a reason for the differences, and a route to support.  We're all different, some more different than others.  I believe this is more of a problem now than it has been historically as we are all expected to be treated the same and behave the same.  Eccentricity is not as well tolerated.






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