I think this will be more of a frustrating rant rather than a blog post...so apologises!
I am starting to get a bit fed up of seeing various professionals, outside agencies about the problems we are having with Reuben and nothing being done or put in place for him (and us)
Today we had an appointment with Reuben's paediatrician. We see her around every 3 months.
Every time we have had an appointment with this doctor, we are always still waiting 1-2 hours after our appointment time as she never runs on time, so today was no exception. Once in with the doctor, she spends all of 10-15 minutes asking us where Reuben is at, what has been happening, how different appointments have gone etc etc.
I can't help but sit there and think..
1 - Is the information from his various appointments not in his file?
2 - If so, then why have you not made a point of reading it before our appointment?
3 - Finally, you are the professional, is it not your job to give us some feed back/information/help?
After spending the majority of our allocated time with her explaining what has been happening, she sits there making notes, nodding and making incredibly irritating "hmmm" noises.
At the end of the appointment, she fills out a form for us to come back in another 3 months and says, "well, lets see how he gets on and I will see him again in 3 months".
A couple of weeks after our appointment, we will receive a letter from her, detailing all that was discussed at the appointment. WHY???? I was there!!!!!
As I have already mentioned in a previous post, we are having trouble with Reuben going to sleep at night. This has been going on for about 3-4 weeks now, and has even progressed to him getting up at 4am, shouting "morning" at the top of his voice. Reuben is getting more and more tired in the day, not listening and his concentration is not as good as it usually is.
So far, the paediatrician has no answers or solutions for us. Her words were today, as there have been no major changes to Reuben's life and he has not been poorly, She does not have a clue what is going on. The same goes for the lady from CAMH's. Her view is that, if Reuben is not causing any disruption in the house or to any other people and he is safe, then let him get on with it, and he will soon wear himself out.
Well. the fact of the matter is...he is disrupting our house. My eldest daughter is currently doing her exams at school, my middle child also has tests at school and my husband is working from home and studying for his PhD. With Reuben shouting, banging, "fixing" things etc nobody can get anything done. As well as me that spends the evening running up and down the stairs trying to get him to go to sleep.
Along with bedtime being a nightmare, Reuben's behaviour has become more challenging over the last few weeks.
Every day when I pick him up from school, his 1-1 informs me that he has been quite disruptive and has had to spend some time out of the classroom in time out. When they try to correct him, he finds it funny and laughs
.
We have this "silly" behaviour at home too. Along with the tempers of banging his head against things, biting himself or attacking one of us.
When we try and talk to Reuben of even shout at him for this behaviour, he thinks it is hilariously funny and laughs. No punishment works.
We have tried taking his favourite toy away, having a "sad mat". distracting him etc and nothing works. Yet when we try to explain this to the various outside agencies/professionals we get greeted with a smile and the old excuse "he has development delay which maybe the reason for his behaviour", or "he is probably just testing you and trying to find the boundaries".
I am now at my wits end and do not know how long I (and my family) can go on like this. But what can I do, where can I go?
I suppose the only solution is to keep going. At the end of the day, Reuben is my son, not just an NHS number.
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