Hate feeling in limbo :(

[MrsStark1]

My Dd (5) is waiting for a paed appointment currently advised the wait will be early November (referral made in July).
I am just so fed up of being in limbo I have had a few emotional months about it all and no-one to talk to. I hate crying randomly and in public I am not even a crier usually.
I hate not knowing if it is something and what or if its nothing. I hate the waiting. I hate the feeling alone and being confused.
Sorry prob a pointless rant but feel so rubbish :(

Hi mrsstark I know how you are feeling I was in limbo and confused with my dd as there was a ? over ASD, even when we saw the paed she kept saying lets wait and see and come back in 6 months. It felt like it dragged on for so long (about 2years) and I just wanted to know one way of the other. By the time dd had the ASD dx, although sad, it was mainly just a relief as I already knew by then but was so glad the whole process was over and I could move on and help dd the best I could. Before the dx I was still holding on to a slight hope that I was wrong but then it hurt every time something happened and I realised I wasn't.
I spent a lot of time on here then and just tried to find ways to help dd with the obvious issues she had with speech and communication regardless.
I ended up seeing a private paed as I was so fed up of waiting so had a private dx about 6m before the NHS dx.
You def need to rant about it sometimes and this is the best place
Hope you get some answers from the paed in nov.

We seem to have spent the last two years in limbo as we wait for the next appointment or decision. I think it's the loss of control that is so frustrating as it always seems someone else is in charge of your life. I am hoping with secondary school starting this week we will enter a more stable period again but still have worries about the ability of ds2's school to deal with him. This is a great place to moan so keep posting. Has kept me going over the past two years anyway.

Thank you it is reassuring that I am not the only one. I already know the paed she is due to see and I have my worries about them slightly. It is mainly because of school I dont want a long wait as she is very far behind her class and even the lower ability children have made steps where as she has made the tiniest shuffles said her teacher who was very concerned about her and was fully behind me. School senco is not particularly interested yet and teacher asked me to push for referral outside of school.

Osospecial - how did you go about a private paed and what happened and how much if you don't mind me asking? I am more than happy to go down this route if it gets it done quickly so we can access support.

Oneineight - yes definitely, I can't do anything as it is beyond my control I have to wait for others say so etc

MrsStark I don't want to make things any worse for you as I know from experience that where you are now is just horrible, but you ought to know that support doesn't come because of a diagnosis. Support comes because you fight for it and is supposed to be based on need, not diagnosis.

Therefore, the diagnosis will help you understand the issues better but really, the support should be happening now if it has been flagged up by the teacher.

I would consider getting some of the teachers concerns in writing and then applying for a ECHP (like a statement) as that progress does seem to suggest she would benefit from some protected meaningful provision already. If/When you get the paed report that can feed into it as the process is quite lengthy.

Hi mrsstark sorry only just seeing your question, we saw a private paed that I had read about on here as being particularly good with girls with ASD, her name was Dr Daphne Keen, she was in London and cost around £750. It was a lot to pay but it was worth it to me as by that point I really just needed somebody to tell me straight if they thought dd had ASD or not instead of 'let's wait and see'
I agree with starlight though, diagnosis does not mean getting the additional support your dd needs and I had to go down the statementing route too which took around 7 months. The private paed report did help with getting what I wanted in the statement though and by the time the process was completed we had the NHS dx too. The dx was important to us as we wanted a place in the local ASD unit and not the S&L unit.