Ground down by diagnostic process but no help

[babnye1]

Right, now, I am trying not to get too worked up and silly about this. We've just had a lovely holiday,although my son who is 7 and almost certainly has an ASD was very difficult and didn't want to leave the holiday cottage mlost of the time.

 

Now back to reality. We get a letter on our arrival home from the useless CAMHS psychologist who is dealing with my son. She did a school observation in March which was pointless. She hadn't read any reports or ask teachers about anything of use and just reeled off a list of stupid statements in a one page letter e.g. he doesn't lash out, he can give eye contact. Really, who said he didn't? What a load of rubbish. I wrote and complained as she hadn't take into consideration or offer any help with the problems he has had at school e.g. not being able to stay for lunch, not getting in in the mornings, responding badly to change and lashing out. For example, yesterday he wouldn't go into class until the class TA he has been working with came to help. He was curled up outside the class, hands over head. He has gone into school this morning with a spare pair of pants in his bag because he is getting hysterical if he gets a splash of wee on them. This is a recent anxiety so I don't know where it is going to lead. But I am so annoyed as these things just seem to get worse and no one is interested, He is on the waiting list for an ADOS/ADI but the woman who does it is the head of the team and it is she who went in to school. She is useless. So we are trying to get a referral out of the area.

 

Yesterday, we also had to see our OT who has been very helpful and supportive to date. Yesterday, she went through all DS's problems areas (we have been seeing her since before xmas so she knows him quite well).

 

She then made a comment about last time we saw her. He had got wet on his sock and started screaming as we were about to leave. I whipped shoe and sock off and gave him a piggy back, thus defusing the situation and calming him down. She had someone with her observing so I didn't want it to escalate and I know what DS is like about socks etc.

 

Anyway, she mentioned that she thought I might be giving rewards for this behaviour by offering a piggy back. I completely agree that some of these sensory issues become worse because they develop into routine based avoidance issues but how are we supposed to know how to deal with this as parents without help?

 

I got a bit upset, not defensive, I accepted that these things can be behaviour related i.e. they do things to get a result but they start off genuinely enough. However, on this occasion DS was not looking for a piggy back, he just wanted his sock off and I wanted him not to scream. Mission accomplished and pat on the back for me I thought.

 

I also think if I hadn't learnt to respond quickly that they would get the screaming, kicking child they seem to expect and who gets priority for assessment.

 

I just hate feeling that I was being judged for it.Judged but not offered help. She has no strategies for dealing with the sensory issues at all.

 

Right rant over....

[cmuir]

Hi

 

Completely sympathise. I went through the same c***. Didn't seem to matter what I did, it wasn't what their text book said!!! Truth is that whilst it is generally easier for outsiders to spot weaknesses etc, I'm unconvinced that most have a true understanding of what it's like to parent and manage a child on the spectrum. There is often more than one way of diffusing a problem. I recall being told that I was being negative because I" kept a diary of Rs behaviours. I was fuming and I think it was the one time that I did lose my temper. Told CAMHS woman that if she wanted me to sit and say how wonderful R is, I could certainly do that because he is a great kid. However, he has lots of issues and one doesn't go to their GP and say 'everything's great' do they? It can be very difficult to remain calm and composed, but if you can it will go in your favour. Make sure that you have your say ie being told that you reward your son's behaviour – tell them your viewpoint as it's completely valid. I found that I sit and fester if I didn't convey my view and very therapeutic to do so. Hang in there. Sadly, the diagnostic process is a rollercoaster and also can be lengthy. Reason being that often several professionals are involved ie SALT, OT, etc. I found after 18 months of being passed from pillar to post with a handful of some 19 reports, my patience ran out. I wrote to my son's consultant saying that I wanted answers – I felt that my son had been seen by a number of people, but the wrong people as they couldn't provide any answers. AS cropped up again and again, but it seemed that no one was really prepared to take responsibility for formally putting pen to paper. Guess what I'm saying is that yes there is a process, but there comes a point when that process has to be reviewed to see if it's worthwhile. Persevere! Take a bit of time to recharge your batteries (mine ran out frequently, but after a short time, I found I could tackle things with renewed vigor).

 

Caroline

[babnye1]

Hi

 

Completely sympathise. I went through the same c***. Didn't seem to matter what I did, it wasn't what their text book said!!! Truth is that whilst it is generally easier for outsiders to spot weaknesses etc, I'm unconvinced that most have a true understanding of what it's like to parent and manage a child on the spectrum. There is often more than one way of diffusing a problem. I recall being told that I was being negative because I" kept a diary of Rs behaviours. I was fuming and I think it was the one time that I did lose my temper. Told CAMHS woman that if she wanted me to sit and say how wonderful R is, I could certainly do that because he is a great kid. However, he has lots of issues and one doesn't go to their GP and say 'everything's great' do they? It can be very difficult to remain calm and composed, but if you can it will go in your favour. Make sure that you have your say ie being told that you reward your son's behaviour – tell them your viewpoint as it's completely valid. I found that I sit and fester if I didn't convey my view and very therapeutic to do so. Hang in there. Sadly, the diagnostic process is a rollercoaster and also can be lengthy. Reason being that often several professionals are involved ie SALT, OT, etc. I found after 18 months of being passed from pillar to post with a handful of some 19 reports, my patience ran out. I wrote to my son's consultant saying that I wanted answers – I felt that my son had been seen by a number of people, but the wrong people as they couldn't provide any answers. AS cropped up again and again, but it seemed that no one was really prepared to take responsibility for formally putting pen to paper. Guess what I'm saying is that yes there is a process, but there comes a point when that process has to be reviewed to see if it's worthwhile. Persevere! Take a bit of time to recharge your batteries (mine ran out frequently, but after a short time, I found I could tackle things with renewed vigor).

 

Caroline

 

 

Thanks Caroline. We are just waiting on diagnostic testing now - SALT has been done and OT is ongoing. But the CAMHS side is dreadful. I had little confidence in them to start with as they didn't seem to know what they were talking of but I have less now. Interestingly, whenever I raise this with any other health professional, they don't contravert what I'm saying!!

 

Honestly, the professionals on the Early Bird Plus course knew more about these things.

 

The local CAMHS has just been taken over by another MHT so I have asked that someone else deal with the case other than the two dysfunctional professionals who do the ADOS testing at the local hospital. There is a possibility this way that we might get some help from an out of area team as the new MHT is not from this county.

 

Disappointed in my OT though. I just felt as if I'd had the rug pulled from under me.

[got the tshirt]

I know how you feel, the trouble is, as someone said to me not long ago. We work so hard to keep our kids on an even keel that in a way we help to cover up some of their difficulties. I regularly use all my parenting strategies just to get Dd3 out of the house in the morning and by the time I get to her to school I am exhausted. But no one sees all this.

I can understand why you didn't want your son to fall apart over his sock because its you who has to spend hours putting him back together.

How dare these people have the nerve to make you feel like this. You are doing the best that you can and have gone to them to ask for help.

I am going through similar at the moment again [ have been down this road with Dd1]. For the sake of your lad and your sanity just remember you know him best.