Getting some things off my chest. (Warning if you do actually read this, go for a pee and grab a cuppa before you start as it's a long one).

[dekra]

Sorry folks, just feel I need to get some things off my chest and in black and white.

 

This post might end up a huge dumping ground for frustrations but also hopefully help me get things straight in my head.

 

So an update on my son who is now 7. At 3 his diagnosis was given as a global/general developmental delay and language disorder of both receptive and expressive language.

 

In the last 3 and a half years (so half his life!) we have had the frustration of so many people not taking us seriously over his condition, being fobbed off and depending on who we talked to either dismissed or well nigh ridiculed for our insistence that he we believed he was on the spectrum. When the initial ados (which felt like it was only performed to us shut up) showed that he scored too well in certain areas for a conclusive dx of asd he seemed to be put on a back burner by the healthcare professionals. Sleep was a huge issue as well as the main difficulty of serious language difficulties. About 18 months ago we changed paediatricians and sleep was an area we raised as although it had improved so that he was no longer waking screaming multiple times a night he was still awake for a large part of the night. She agreed Melatonin would be helpful, yay said us about time. We were asked to flll out sleep diaries which we did and were promptly lost somewhere between us doing them and sleep nurse receiving them. Did them again for a fortnight and got a call when she had reviewed them complaining that he was "all over the place" and could we do them again. We were also criticised for how we marked the diary up - it was split into 15 minute blocks but he might only be awake for 5 minutes of that block - we were marking it down and told not to. Some nights he might be awake 20 times but only 5 minutes a time. Were we supposed to only count him as awake when it was the full 15 minutes? That certainly would not give an accurate account of his sleep pattern as on some nights it might look like he had an unbroken night's sleep on what was a period of hell on earth for us. She asked us to do the diaries again and whether it was the right call or not I refused. I figured another 2 weeks of sleep diaries would give her no further information plus the summer holidays were about to start and for our own sanity we let him find his own sleep pattern during the holidays.

 

Where the new paediatrician also scored big with us was her reassurance that yes it wasn't all in our head and there certainly was more going on with our son than just the initial 2011 diagnosis. She involved a new clinical psychologist who also took us more seriously. Since then we have had a lot of appointments at home, at the hospital and in school where she has observed and performed numerous ability and cognitive tests. A new ADOS was performed in June 14 and frustratingly we still have not had the feedback over this as the CP wants the results of ALL the formal tests she has either performed or requested collated before she gives us a final report. In early July the specialist SALT that has been involved with my son (and now my daughter but that's a totally different story that I might get around to posting once this saga is done) tried to do a new formal S&L assessment on him but he was uncooperative (a common theme) and she advised she would complete the testing at school once the summer holidays were over. This promptly caused a meltdown from my son who has developed some serious school related issues - more on that later. Long and short of it is school has been back 2 months and the test hasn't been recommenced. Since April 2013 he has not received any formal S&LT.

 

School had become a daily nightmare for the whole family. Our son is normally a quite well behaved and biddable little boy but by late 2013 his language skills had improved enough he was able to tell us he was frightened at school. We asked the school if there was a possibility that he was being bullied and we were immediately and thoroughly disabused of that idea. From that point on the relationship with the school and communication broke down. It took another 6 months or so for him to be able to be more specific and tell us that it was the noise at school that scared him - lunchtime being a particularly unpleasant time for him. We asked the school at the start of this school year if there was a way to reduce the noise and therefore distress he was subjected to. I fully realise noise is something he has to accept as part and parcel of normal life but that doesn't mean reasonable adjustments shouldn't or couldn't be made to reduce the impact on him. I initially requested a quiet room be made available for him to take lunch but this was rejected. 3 weeks into term and we had been forced to take him out of school during lunch and take him to a local café or bring him home for food. A short term solution at best - I was putting 30 miles a day on average on my car running back and forward on school runs for both children. A solution offered y the school was to have my son always on the last lunch sitting in the dinner hall and the (very loud) pop music turned off by that time. We tried 2 days of this and managed to get a reduced level of morning meltdown the first day at the promise of a quieter lunch but it didn't last long as when asked about it he said the music didn't get turned off and the second day I was in the school about something else at the time and I myself heard the proof that it was still playing and very very noisy.

 

Add to this incidents of the janitor singling my son out and chiding him for being late when I dropped him a 9.05 on morning dispite around 8 children all arriving around the same time. The only difference was my son stopped to give me a kiss before going in the door (my son is very affectionate - inappropriately so on many occasions, one of the many arguments by certain professionals that he can't be autistic). I also had issues with the school as I had asked in June 2013 for a CSP to be carried out and was fobbed off and promised all he needed was a IEP and I would be forwarded this asap. Fast forward to Aug 14 and again I was refused a CSP (I was told I had no right to ask for one without the backing of a professional if the school didn't agree he needed one). There was again the promise of the IEP which never eventuated. Did I mention too that for the third year running despite me having told them over and over again about it I was once again pulled up by the new class teacher for him falling asleep in class. She also mentioned she wasn't sure how long he had been asleep but his arm where he had rested his head and gone blue from lack of circulation!!!! Do none of these teachers talk to each other to pass info on about children with additional needs? Or read the damn file where the school nurse had to intervene in his first year at school on our behalf?

 

I took matters into my own hands and have moved schools and seem to have found a smaller quieter school with more knowledgeable staff (the headteacher there is the former deputy at the old school that was the only one that ever did anything useful or used common sense in respect of my sons needs but unfortunately was seconded to another school as head then moved to the current school as permament head) that seem to understand not only how his difficulties influence his behaviour but how to get the best out of him. Score one for something finally working out!

 

As for the testing/assessents it's like getting blood out of a stone getting the clinical psychologist to commit to anything until she has all the information. We've always been plagued by various health care professionals going on about his "spikey profile". However we do understand that she refuses to be drawn because she wants to get it right. However considering this current round of apppointments then assessments have been going on about a year we have a fair few more grey hairs. Trying to explain to teachers etc that "it's a lot like he's autistic but he's not autistic" is helluva confusing for us let alone the teachers etc. Oh did I mention the substitute teacher last year and special needs "nurture" teacher this year at the new school both have experience of children on the spectrum and don't understand how he doesn't have that dx. Anyways...... paediatric clinical psychologist when asked directly if she thinks he's on the spectrum has only acknowledged that he has "traits, but there is a lot more going on with him than ASD" but she won't tell us what she is thinking yet.

 

Last week there was an incident at home on Monday morning over socks. I was tired, grumpy and in pain and the frustration of a 7 year old not even being able to get a pair of socks out his drawer led an escalation of grumpiness and frustration on both side. This was the first morning also I had any trouble getting him to the new school. That night at bed time I told him to turn the xbox off and get into bed. He asked why and my answer was something along the lines of because I told you so. This triggered my son telling me "I think I will just leave home." I was flippant thinking it was just sulking over the xbox. I asked where he was going and said to Gran's. My mum lives around 60 miles away. I told him on you go then see ya. I AM AN IDIOT! Given that I have aspergers I should know better, he took me literally. His dad was in the kitchen and he went and asked him to go to my mums with him and when dad said he lived here our son said he would go himself then. My husband said our son's face was devastated when he came down and he was honestly planning to leave. I came down to try to reassure him and the way he was talking it was horrible. It was going back to the sock incident and basically he said he was no good. Leaving to go to my mums seemed to be the only way he could take himself out of the situation. For a little boy with no concept of mortality beyond dying in a computer game where you can respawn and continue this to use scared the hell out of us as this was akin to a suicide threat. It struck us both the same way and might sound melodramatic but I do think if he understood death that's what he would have been threatening. After this we saw the psychologist urgently as she herself felt he suffered from low mood. And she has promised to get Melatonin sorted finally without having to do anymore damn diaries - but this is subject to the sleep nurses agreeing to it and a Dr willing to prescribe it without more but she thinks she can swing it.

 

Well I think that's us up to date on him.

 

Top that with my husband who has crohns disease being in hospital 2 weeks ago with diverticulitis and the meds strong antibiotics given to him causing him to get c-diff again and running around taking my daughter to her speech and language sessions and still having no clue as to what her diagnosis might be (she has very waxy ears but screams blue murder if you even go near them let along try to clean them). I am not concerned about ASD with her as she is very sociable but there is markedly an expressive language delay and some receptive language delay. Her hearing has been checked and she has minor hearing loss in the lowest 2 registers in one ear. This should not cause the language difficulties however. The audiologist managed to get a look in her ears and the ear that was showing hearing loss has less wax build up than the other one. Both had enough however that she was unable to view the tempanic membrane so could not say if it was possibly glue ear. She was been referred to ENT but an appointment in July has to be cancelled due to us all having a bug and as of yesterday when I chased the appointment up she is still on the waiting list for a new appointment. She sleeps well unless ill but when awake although well behaved she is constantly on the move, she cannot seem to sit still this concerns me at time and at other times just makes me think I am too paranoid.

 

Me? Well my official dx of AS last year has been a god send. From being a A/B student in the first 2 years of my nursing degree I managed to fail a practical exam (I had to pretend one lecturer was both my patient and another nurse at the same time). I scrapped a pass on the resit when I requested 2 lecturers, one for each role which was allowed as a reasonable adjustment under disability rules. Academically I have scrapped past 2/3 of the year which for me normally is unheard of. I am now only 16 weeks on placement and 2 essays short of being a qualified nurse but I am currently on interruption as both my own mental health and my childrens needs mean I need to be a stay at home mum for now. Something had to give eventually. But I have almost 2 years left to complete my course and although sometimes it feel like I will never do it I know I am not going to let almost 3 years of blood, sweat and tears go to waste. A change in meds has helped my depression for now and the world doesn't seem quite the deep dark pit it seemed during the summer.

 

Sorry for the long post folks and if any of you are still with me at this point thanks for taking a chunk of your time to read my ramblings. I am now off to fill in PIP forms for my husband as although he was refused DLA 2 years ago the change to PIP seems to be one that may actually be beneficial to him after a good long look at the criteria when you take both his crohn's and OCD together. Then I'm off to boil wash the towels and sheets to reduce the risk of c diff transmission. Fun times.

 

Oh and I better phone and chase up that Melatonin.

Edited October 14, 2014 by dekra