Sleep Appointment, Mental Health Appointment and the boy that will be a giant!

J has been sleeping in his bed. After my previous blog a few months ago (Here) he did'nt go back to bed sleeping as I had hoped.
It has now been two weeks of every single night going to bed, falling asleep and staying there till morning. I put this down to two factors - the melatonin that encourages his brain to wind down (for which he has no melatonin naturally produced by his body) and the I Pod touch he received for Christmas. The I Pod means he can access YouTube and all his favourite children's shows and songs and he is one very happy boy. I don't think he understands it is actually his and not just one I allow him to borrow, like I did with my I Phone. He gives it back to me upon request so I can charge it back up.

The ironic thing is that now I have resolved the problem (well a problem to society, us as a family were used to him sleeping on the landing or the sofa) we now have an appointment for the sleep clinic!

Unfortunately they sent an appointment through on a Friday (and dated from the Wednesday) for an appointment the following Tuesday. When phoning to re-arrange I was asked why I was cancelling (well I call it re-arranging, not cancelling, but each to their own!) and I explained that with three children, two of school age and one toddler, I have to plan well in advance excursions and appointments which fall outside of my regular routines. I need either help from my mum at the actual appointment (to keep the toddler occupied) or for her to stay at home and care for him there. And with so little notice I could not get the help required. Considering that the appointment is for around 90 minutes and you will understand why - it is not a brief synopis meeting of 15 minutes duration.

I also asked for an appointment to be tailored for earlier in the morning so that J did'nt miss too much school, only to be told the appointment is not for him, but for me! How can they judge the whole family situation if they do not meet him? I also pointed out that the letter made no comment as to it being soley for me to attend and not the child in question. It may seem obvious to those working there, or indeed some mothers out there, but to me J has always had to attend appointments that are about him and when nothing is written down telling me otherwise I just presume that that is the case.

So I am waiting for my new, re-arranged appointment to come through, and am hoping I am given more than a few days to sort out the toddler situation. Damn me for having the audacity of having more than one child eh?!

I also have an appointment through for the CAHMS team ( Child and Adolecent Mental Health) which was referred by my GP after I requested an ADHD assesment and potentially being prescribed medication to help calm him down during the day, and help his hyper manic behaviours which I know not only stress myself and his brothers out (not to mention the staring adults we encounter out and about )but also stress him out as he finds it hard to calm down.
As my GP said, "we have ruled out that is was the lack of sleep that was causing the unwanted and undesirable behaviours, so now we can seek further help in tackling the daytime traumas he endures."

But again, and it seems a pattern with J and specialists, the appointment sent through was unsuitable. This appointment does want him to attend (see I told you!) but they sent the time through for 2.30pm. Fine for J, but not for me or my middle son, as I can not be in two places at once, collecting him and attending an appointment. I re-arranged for further on in the week, for an early slot (after dropping off my middle son at school) and it was done without hassle - thank goodness.

I am really pinning my hopes that this appointment is'nt the start of endless diary making of every day events, for the next six months, with faffing, waffling, time wasting and the continued frustration of talking about it, but not being helped with the one thing he needs - medication. I know there are parents out there anti medication - good for you. I however have come to the conclusion that it is more harmful to J's health to not have suitable medication to help ease his anxiety, his manic behaviour (spitting, screaming, headbanging, smashing glass etc) than to try to continue battling through it, damaging his body, allowing his siblings to witness it all and suffer a further few years before someone intevenes and demands he takes medication, or he does severe damage to himself or someone else. We have all suffered for several years on and off with his manicness and distress and it is now not abating but spiralling further and further. So please don't stand in moral judgement over me as to why you would do it differently, as this is my family, and my situation, and the time has come to not keep talking about it , but to be pro-active and tackle it with proven medication.

Anyway, onto a brighter note - I measured J the other day and he is now 5ft tall (that's 60 inches). At 9 years and 8 months old, that is tall! According to charts that work out the estimated final height when growing has stopped, J is working out to become 6ft 8 inches tall ( 80 inches) ! That is one tall little man I have created.
With size  5 (UK adult) feet he is rather like a baby elephant stomping around and up and down the stairs. I fear for my staircase on some days when he thunders up and down in his manic moments of excited screaming.

A quick catch up....

It has been a while since I blogged but that has been down to having so little spare time.

J is still presenting me with hard behaviours and it has caused upset with his middle brother, O.
Lots of manic laughter in O's face, spitting in his hair and pushing him to the floor.

The spitting has not ceased since the last time I wrote about it and it is so bad I have stopped taking him out. I have had to have him with me when collecting O from school for several afternoons (due to the transport escort asking me to take him otherwise they would be sitting outside my house for 20 minutes - they always ask this when one of the other children is not on the bus and it means one less stop).
J spits and twirls round. He sits on some play equipment and spits out the corner of his mouth.
He comes up to me and barges me and kicks me.

You can imagine what this must look like to other people.

The other undesirable behaviour that is back is the weeing around the toilet bowl. I thought I had gotten him back to sitting down, but it appears he has seen or been taught again, how to stand up and wee. All well and good for neurotypical able bodied children of nine years old. Not so good for children like J, who know they have to stand there, but not that they have to aim it inside the bowl. Kitchen roll and spray is being used many many times a day to clear it all up.
I have an automatic response now when I hear him lift the toilet lid up and that is to shout out " J sit down". He does as he's told. But the other times when  I don't hear him, I soon discover the delight of sprinkles everywhere but the bowl. I was on the phone the other day to a call centre and the man asked me the following question " what is the first line of your address?" and I replied "J sit down". The man laughed and told me that was incorrect, but he understood! It was automatic for me to say it as I heard the lid being lifted up!

The melatonin is still working it's magic as well. Magical Marvellous Melatonin. It has given me back the later part of my evening (11pm) but then I can't really achieve much at that time, apart from empty the washing machine, empty the dishwasher, clean the kitchen, iron, sort lunch boxes, catch up on the news, read a book and pass out.

Just before Christmas we had W (his baby brothers) Christening. I had no extra care for him and was worried about his behaviour. In the church he coped very well. He wandered about and we let him. The vicar already knew about him and had removed all dangerous or heavy objects and had no candles.
Towards the end of the service J walked up the pulpit and took hold of the microphone. It was switched on and he started babbling away. It was really very funny and made us all chuckle. Trust him to add his own little twist to the day, and make it even more unforgettable (in a  nice way I mean).
He coped very well at home too with all the visitors and strange food.
He had two school friends there as well, one who is in his class. I tell you, seeing him and his class mate sitting together on the sofa, his mate, another J, eating his food, and my J drinking his cola, I felt a bit teary. He has never had a friend round. Why would he when it has no interest to him? But they were both really comfortable together and it just made it even more memorable for me. I, of course, took a photo for posterity. A milestone for him and for me.

J had a lovely Christmas. He enjoyed opening his presents which consisted of a metre of Jaffa Cakes, a floor drum kit (the flat version you can roll up), two new magnetic drawers (one plain and one in colour) and his very own IPod Touch 4th Gen. Youtube is still his favourite and he whizzes round it searching out Teletubbies, Bear in the Big Blue House, Story Makers, and Balamory. It does amaze me that a non verbal (only echolalic and very very basic demand words - "milk, toast, toilet" etc has such command of Youtube. I have a vision of him when he's an adult, working in a computer shop and people giving him their broken laptop and he just fixes it. No words are exchanged. He just does it. An Apple Genius perhaps?!

Lovely Poem

I am the child who is healthy and fine,
I was born with ten fingers and toes.
But something is different somewhere in my mind,
... ... And what it is nobody knows.

I am the child who struggles in school,
Though they say that I’m perfectly smart.
They tell me I’m lazy - can learn if I try,
But I don’t seem to know where to start.

I am the child who won’t wear the clothes
Which hurt me or bother my feet.
I dread sudden noises, can’t handle most smells,
And tastes - there are few foods I’ll eat.

I am the child that can’t catch the ball,
And runs with an awkward gait.
I am the one chosen last on the team
And I cringe as I stand there and wait

I am the child with whom no-one will play
The one that gets bullied and teased.
I try to fit in and I want to be liked
But nothing I do seems to please.

I am the child that tantrums and freaks
over things that seem petty and trite.
You’ll never know how I panic inside
when I’m lost in my anger and fright.

I am the child who fidgets and squirms
though I’m told to sit still and be good.
Do you think that I choose to be out of control
don’t you know that I would if I could.

I am the child with the broken heart
though I act like I don’t really care.
Perhaps there’s a reason God made me this way
Some message He sent me to share.

For I am the child who needs to be loved,
and accepted and valued too.
I am the child who is misunderstood,
I am different - but look just like you.


This was sent to me and has no author name attached. I make no claim to be the writer of this piece.