And then there is our daughter …

As well as the worries over our son, we are also in the process of seeking support for our aspergers daughter. 

The situation is that after receiving her diagnosis earlier in the year we then had an appointment with the mental health services to assess my daughter as her low mood was causing concern.  We were expecting to see a psychiatrist as we had done with our son months earlier, only we didn’t.  Unbeknown to us the service had changed and we were suddenly faced with a nurse and a family support worker. 

To be frank I wasn’t happy that no one had told us the system had changed; to know helps me to prepare my daughter for a new situation.  Neither was I particularly impressed with having a family support worker imposed on us.  I’m sure family support workers do a great job for those families in need but I absolutely hate it when professionals assume that we are in need without asking. 

Anyway I asked why we weren’t seeing a doctor only to have the curt response from the nurse .  “You didn’t expect to see a psychiatrist, did you?”  “Yes I did; we saw one with our son so we expected to see one for our daughter?  I replied.  She just stared at me then and the conversation moved on to our daughter. 

But even then the nurse made little attempt to communicate with my daughter  and many of the questions that were asked of us seemed to relate to our parenting rather than the health of our daughter.  At this point I felt totally confused and asked what we were there for.  Again the nurse didn’t reply and I suddenly felt that our parenting was under suspicion but I’m not sure what for.  I even offered my own observations of my daughter’s low moods, such was my desperation that my daughter get properly assessed.

Towards the end of this difficult appointment, it was then decided that we had to organise more support for her at school before going back to the mental health services for another check up.  I agreed with this as I was particularly concerned about her at school though frustrated that, yet again, we were being bounded from service to service.

But whilst we were waiting for a meeting with the education people, we then received a letter from the mental health services explaining that because we had “failed” to attend a follow-up appointment my daughter would be taken off the mental health services list. 

I WAS FURIOUS because I had no idea we had an appointment and even if we had been given an appointment which I may have forgotten about (which is quite probable considering the stress I’m under) why did they not send out a letter or remind us over the phone? 

Why should my daughter be denied care because of some administrative error?

Shortly after this and just a couple of days ago, we then had a meeting with the head psychologist and special needs teacher (SENCO) at my daughter’s school. 

During this meeting I explained my concerns: my daughter’s academic difficulties, sensory issues, her withdrawal from group activities, her low moods, and the constant anxiety she is under.  I explained that school exhausts her so much that she will not do much outside school and instead takes refuge in her special interests.  I personally do not think she has the capability of coping with the large secondary school that she will have to go to next year.  I said (and the SENCO agreed) that we wanted to make sure that our daughter’s difficulties do not deteriorate to the point that, like her brother, she ends up with serious mental health difficulties.

Anyway it has been decided that the psychologist is going to go in and assess my daughter in school and then to meet up with us again before christmas.  Fingers  crossed that we get something positive from this but knowing my authority as I do, I am not hopeful.

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14 Responses to And then there is our daughter …

  1. theramblingpages says:

    You sre having such a tough time at the moment. W ehave been thretened before with not being in ‘the system’ anymore due to lack of attendence or lateness for appointments which is disgusting. I often feel like saying they should replace me for 24 hours and be the one to try and reorganise it all whilst living your life. I really hope the school and ed pysch can be more help x
    PS how is your son doing? Any happier over school this week? We have hit problems now as well :(

    • Aspie in the family says:

      Hi RP, I’m disappointed with how inflexible CAMHS is. Considering they are supposed to be dealing with mental health problems as well as disabilities such as autism, you would think they would realise the importance of being flexible in treating their autistic clients. I have lost confidence in them truly understanding the autistic spectrum; they certainly have no insight into how difficult it is for us parents/carers.

      PS son is unwell and not in school. His anxiety and fear has shot up and worsened his ASD. School are responding quite quickly and CAMHS have come in again. Fingers crossed he will recover more quickly this time.
      Deb x

  2. Lizbeth says:

    I don’t get this. To not see a patient due to missing one appointment is a bit harsh. Too harsh. I can’t tell you how many appts I’ve missed or how many times I’ve looked down on my schedule and to see 9:00AM and I have no idea if someone’s coming to the house or if I’m supposed to be somewhere. That doesn’t see fair nor equitable. I hope the school psychologist and the special ed teacher can give you some direction. At least they see what’s going on for what it is–autism–and not trying to work you up for poor parenting. Sigh. I’m sending you big hugs. You should not have to be going through this.

    • Aspie in the family says:

      Thanks Lizbeth. I don’t get it either. Our local surgery send out telephone reminders and don’t chuck us off the list if we forget appointments so I don’t understand the mental health services way of doing things. Its ridiculous we are now on another waiting list. Lets hope the psychologist and special ed teacher can help.

  3. Steph says:

    It is shocking – how can anybody think the changes are helpful to anyone? All it does is push back any actual help (ha) and add to the waiting lists. Sorry to hear you are having these problems with your daughter. It’s such an important stage. I really hope you do get some help soon x

    • Aspie in the family says:

      Hi Steph. I’m so disappointed with the services (or lack of) for autistic children and those with potential mental health problems. There is no coordination but more worringly there are few professionals who truly ‘get’ the autistic spectrum. Its a constant fight.

  4. Lucy says:

    I’m so disappointed for you and your family. I really wish there was someone out there who’d decide it’s time to take action instead of pushing you from pillar to post.
    My friend who has 3 children on the Autistic spectrum is having a terrible run-around with the authorities, she really feels things have changed since the change of government.
    I want you to know I always read your posts, but as I often read them on my phone, I can’t comment – the ‘captcha’ code never works for some reason.

    Keep strong, and don’t take any sh*t,

    Lucy x

    • Aspie in the family says:

      Thanks for commenting Lucy; I always appreciate your comments. I’ve been wondering if the new government has affected services too. In our local area there has been increasing complaints about mental health services for children and teenagers. Families are not getting quick enough help for their children.

  5. Beth says:

    Once again I can only send you big hugs. Time and again I hear of the chronic lack of support for children with autism and my anger grows. I wish I had more power and influence but I don’t know where to direct it. I wish that there was ( in theory at least- let’s face it parents are busy anyway but parents of children with autism are that bit more exhausted, stressed out and have less time than the ‘ average ‘ parent) a place where all frustrated parents could band together and lobby to have teacher training changed to include an SEN element, particularly for ‘ hidden disabilities’ like Aspergers. Where we had some means of influencing how so called professionals interacted with our children and more often. Where appointments for assessments were in keeping at least with other childhood disorders and diseases- not shorter, just equal to, that’s all I ask. Where our children or the entire family do not have to be heading ( or headed already ) directly towards a crisis situation before someone will even think about picking up the phone to offer some help or even listening , really listening to what we have to say….

    I hope your daughter’s school assessment by the psychologist leads somewhere positive for you and your girl.I hope your son’s anxiety is decreasing and he is opening up a little at least. And I hope some of your strength and fighting spirit is infectious and can be absorbed through an internet cable and is headed my way:) I am so deeply sorry for your battles and your stress and your tears for your family. And I thank you for your inspiration for making me put things into perspective and making me want to don the boxing gloves and war paint rather than a box of tissues and a spine like a jelly fish:) Take care Deb. Beth x

    • Aspie in the family says:

      Hi Beth; thankyou for your lovely comment which I really appreciate. I understand your anger. I feel the same somedays, not helped by the fact that I don’t have the time to lobby (not at the moment anyway). My priority (like most parents) is the health of my children and battling for understanding and support. But then I think that by advocating for our own children in this way, perhaps we are contributing a little bit towards furthering professional understanding of other children and families like ours? I hold on to this idea because it stops me feeling down. I’ve learnt the hard way that its easy to become consumed by anxiety and develop our own health problems when we’re looking after special needs children as I did a few years ago. So I try and hang on to something positive but I do have days when all I need is a box of tissues. Deb x

  6. JuliesMum says:

    Horrible and all too familiar. No one explains what is happening or what the magic incantation is to open the door. Your meeting sounds like a nightmare. The problem I always have in these meetings too is that I *hate* talking about my child’s mood in front of them without involving them in the conversation – I really think the health professional should try and interact with them. Horrible to feel your parenting style is being judged too.

    • Aspie in the family says:

      Thanks for the comment. I also hate talking about my child’s moods as well and end up restricting what I can say because I don’t want to undermine my children’s confidence. I find I could do with having a quick chat with them without my child being present but there’s never enough time to do this. I really think health professionals should try a bit harder at interacting with our children as well.

  7. Blue sky says:

    Oh it’s just so unbelievably awful that your daughter could be denied help because of an administrative error :((. Here I am fighting tooth and nail for my son, and all I’m getting is meetings (because apparently the staff get paid to attend these and are seen to be doing something ), but no actual ACTION that would improve my son’s behaviour and mood.

    • Aspie in the family says:

      Hi Blue Sky. Its dreadful how our children are treated. I keep racking my brain as to whether I have missed an appointment but I’m sure I haven’t. i think they decided because it was a school thing that she didn’t need mental health services at the moment, to throw her off the list. The problem is if the psychologist does his assessment and thinks we have to go back to mental health then we have to go on another waiting list for mental health services. I really don’t think autistic chilren with potential mental health issues should be treated like this. Where’s the coordinated service? Where’s the understanding and empathy for our situations? Sorry to go on.

      Shocked that you are not getting any action. I don’t know what to suggest to you but to keep fighting and to use the support either online or through the other autism communities. If ever you need to talk about it, please feel free to DM or email me though I realise you have so much to deal with at the moment. Deb xx

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