Another family that needs a helping hand before they fall off the cliff, not when half way down……

After years and years of j not sleeping well and us doing all we can to help within our power, 2 weeks ago I went to our gp absolutely desperate for help for my little man and for us as a family. J has not slept through the night ( not once) for over 3 months. This isn’t just the odd grumble, ask for mum and then drop back off again- this is serious sleep deprivation sencarios. I worry about his development as he just isn’t sleeping enough and the bags under his eyes are now the colour of a fresh bruise. My boy no longer has a problem going to sleep, just staying asleep ( and no he doesn’t nap during the day, if only it were that easy!) here are some of his [lack of ] sleep issues :-

1) nightmares – he has dreamed of being lost in trees, of beetles running over his bed, of drowning etc etc and he screams and is covered in sweat and can take up to 2 hours of rocking him and hugging him for him to dare sleep again, if he does at all.

2) Active brain :- I totally sympathise as my brain sometimes struggles to switch off too. He will cry and say ‘ tired mummy’ but he is physically unable to sleep. Sometimes it is just his brain ticking over random thoughts he cannot communicate and sometimes it is more tangible- 1 instance being where he had ‘ forgotten’ ( temporarily!) how many moons Venus has! A quick look through his favourite astronomy book and he was happy…. but it still took over 1 hour for him to sleep….

3) Genuinely requires less sleep than the average 4 year old. So if he has ( rarely!) slep through till maybe one a.m.- he is quite happy to get up and want to get on with the day. Cue mum encourageing back to bed…. cue major meltdown in the early hours.

4) Obsessions…. J’s obsessions last a few weeks to be replaced with a new one. We have had a particular book on trees, a parricular book on the solar system, marbles, vtech camera, magnetic letters. his latest is a little set of ‘ Alphablocks’ from the tv series. He adores them. If any items of his current obsession are in his room, he literally cannot sleep for thinking of them. So after much fight (!) we have said they are not to be in his room on a night) but he can have them after breakfast on a non school day or when he gets home on a school day. This has helped this issue.

Add to this he will not have dad go into him, only me, so i do not even get a break on the weekend. i am nearing the point of total exhaustion and haallucination… I am not prone to exaggeration, i really mean this. Add to this, he is only at school 3 days a week and i have little m to look after, so I have no means of ‘ catching up.’ i cannot remember when i slept more than 3 hours in a row. Soooo- to the gp 2 weeks ago. Gp says cannot do anything- have to wait for CAMHS. the waiting list is ridiculous- my son will be lucky to get his appointment through by NEXT Christmas. I cry and say I cannot go on like this , there has to be a plan B. Meantime, J has entered meltdown mode ( overhead strip lights, unfamilar room, doctor, focussing in on numbers on weighing scales…. he is angry, aggressive and becoming destructive) Gp wants to admit him to the paediatric ward due to his destructiveness!!!! I calmly explain, I do not want him admitting to hospital, I just want some help to help him sleep, so he, me, we can all function better. he cannot prescribe the drugs so says he will ring the paediatrician in the morning and they will get back to me regarding re- assessment. ( I point out here, j has never been ‘ assessed’ for sleep or anything else – just referred to camhs and will he also help with sensory issues as sometimes he is refusing to eat due to the feeling in his mouth and this can go on for days. Said yes.)

It is now Friday. I have not heard from paed or gp. I had 2 hours sleep last night ( not altogether either). I have rung paed’s secretary- she is on holiday but stand in says she will get back to me asap. I am still waiting. What the heck am i meant to do. i have told them I cannot cope and we are all struggling. Sleep deprivation has huge consequences on people’s mental health and we have coped for so long.

In the meantime… the stress just keep coming. School SENco decided as J shows ‘ no issues’ ( i disagree massively and have put my concerns in writing) at school – they must look to home- what has changed???? For goodness sake! Ed psych says as my son smiled at someone they don’t think he is any longer on the spectrum… looking at interactions at home. So our loving home life has been brought into question by iincompetent professionals. I dared to disagree and was met with ‘ I have a doctorate in child psychology, I’ll be the judge of that.’Ed psych has since been out, done a u turn and is now going to do a full cognitive assessment on J as she aslo feels he is functioning more like an 8 year old and this may be why he doesn’t interact well, as he has nothing in common with his peers. ( Yes, the same woman who said his ‘ interactions were fine.’ God, give me strength.

Then the biggie. My mum has had a stroke- quite a big one- a haemorraghic stroke where blood bleeds into the brain. I thought something like this had happened as she was very confused in the early hours of last Friday morning and I thought maybe a TIA. Gp did home visit and said it was just high blood pressure. Hubby and I not happy, contacted everyone we could to try and help us as my mum so vulnerable and cannot be there 24 hours a day and I am her only relative. No-one could. GP appointment booked for the Tuesday- for me to attaned with her and push for mental health assessment and CT scan. My mum rang her emergency call and to cut a long story much shorter, a stroke was confirmed in a and e with CT scan. My mum’s GP left a vulnerable lady who had had a stroke. What kind of professionals do i have to deal with here?! Hubby and I are pursuing a formal complaint. My lovely mum, is on a stroke unit at the local hospital. Her future changed permanently.

Aside from my mum and other issues of stress ( I won’t go into now!) I feel numb from lack of sleep, from fighting schools, ed psychs, senco’s etc etc My son struggles daily with so many things. then I read about Merlin’s wand and their discriminatory behaviour towards children on the spectrum and, seemingly, those higher functioning kids. I challenge anyone to live my life for just 24 hours….see the struggles my son and all his family has, his routines, his anxiety, his inability to eat regularly due to severe sensory issues, his fears and phobias , his lack of sleep…. No my son does not yet have a diagnosis and he doesn’t attend a special school…. this doesn’t mean he is coping, he isn’t- far from it. But once again my son is penalised.Just as he is with financial support, play scheme support and lets not forget my son does not even have a play mate other than his sister as he is unable to form friendships…. he wants to, desperately too. So this impacts on his self esteem too. Yes, he can speak very eloquently, ( if a little obsessively at times!) and can read like an 8 year old BUT I bet he would swap that in an instant just to have a friend and just to be seen as ‘ normal.’ What a terribly unfair world my boy has to face.

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6 Comments (+add yours?)

  1. Deb at aspieinthefamily
    Nov 26, 2011 @ 08:05:27

    Hi Beth, what is it with these professionals; some of them can be so arrogant. She needs to realise that you’re the expert on your child and no PhD in the world can beat your experience. Nevertheless I’m glad the ed psych eventually came round to a cognitive assessment but whether that will be enough to diagnose an ASD I’m not sure.

    I really recommend that you look up the NICE guidelines on diagnosing ASD because it writes down what your authority should be doing to help your son. Here is the link http://guidance.nice.org.uk/CG128/Guidance/pdf/English

    Hope you can get through to paediatrician ASAP. Funnily enough this is the way we went. School was so hopeless that we ended up asking our GP for help who referred us to our local paediatrician. Unfortunately he did not have much understanding of the autism spectrum and only tested for ADHD. Saying that though, when I challenged him, he did refer us to a specialist centre that deals with developmental disabilities which is where my son was later diagnosed by a team of professionals that included a psychologist, occupational therapist, speech and language therapist plus a referral to CAMHS. If you can get into something like this, this is preferrable in my opinion to an educational psychologist.

    Reading about what you’re going through is so similar to what we experienced a few years ago. Even though we are still having challenges, life is easier in that his diagnosis means we can get the support. Hopefully, you will get to this point as well.

    Deb x

    PS sorry to hear about your mum and I hope she is improving.

    Reply

    • highlanddream
      Nov 30, 2011 @ 06:55:50

      Hi deb, many thanks for your comment, I really appreciate it. Thanks for the NICE guidelines too- It was such a strange coincidence as we had a pdf file of these a while ago and I have hunted and hunted for them this last couple of weeks and couldn’t find them and even googling didn’t lead me to them… so I am extra grateful to you for ending my search!

      In the meantime I have managed to get through to paed – he has no understanding of autism but he has already prescribed melatonin and made an appointment for the New Year… so at least he is aware of our struggles and I am going to see if there if any referral to OT can be made for J’s sensory issues – they seem to be growing worse as he grows up. e.g. never had an issue with the feel of clothes but this has kicked in now and he won’t touch wax crayons! I doubt it will happen but at least it is documented that we have asked for help.

      J has been on the melatonin for 2 nights. I don’t no if it is coincidence but he only woke up once last night AND he got himself back to sleep! This is totally unchartered territory! I feel like i could take on the world this morning and am sure he will feel so much better too. I haven’t had that much sleep in months.

      To be honest, I have no faith in the ed psych. The bottom line is i don’t trust her. She is like a chameleon and changes her mind and her attitude whenever she feels like it and of course, she has a vested interest in reducing schools spending I suppose. She has also lied to me on a number of occasions ( I can’t prove it but I know she has… the biggie being that she had referred J to Autism outreach ….. she hadn’t at all. so why say she had then ???)

      I have ordered a book which may help with the education side of things, it came highly recommended :- http://www.amazon.co.uk/Guerrilla-Mum-Surviving-Special-Educational/dp/1843109999/ref=sr_1_1?s=books&ie=UTF8&qid=1322635926&sr=1-1.

      I have just read your recent blog post Deb and am sending you many hugs.It is the most frustrating, heartbreaking thing knowing there is a problem but your child being totally unable to tell you… not because they cannot speak but it is like the stress renders them mute on the subject. Take care,

      Beth x

      Reply

  2. Blue Sky
    Nov 26, 2011 @ 08:12:03

    Agree with everything Deb said, and you clearly need help now. I know that you ruled it out, but taking my son with aspergers to A&E at the local children’s hospital was what worked for me. It’s like I wasn’t believed until they actually saw his behaviour. I really really hope you get some help soon xx

    Reply

    • highlanddream
      Nov 30, 2011 @ 07:03:10

      Thanks Looking for Blue Sky. The issue with J being admitted to a paediatric ward concerened me because we already had school saying as my son is ‘ fine’ in school ( as you know I disagree!) and suggesting it was something at home …. I had real fears it could escalate and professionals thinking I couldn’t cope with my son and something really nasty happening. I have no faith in anyone anymore. My son does not have classic autism and this means many people think they can diagnose instantly e.g. ” he doesn’t have autism, he is too verbal”, ” he smiles” etc etc I am happy that the GP has witnessed my poor boy in full meltdown mode… it has been seen by someone other than his family and this can only help, surely, in terms of help ( we now have melatonin whereas he was saying wait over a year for CAMHS involvement) and , hopefully, formal diagnosis.

      At least we have an appointment with the paed in the New Year… it is more than we had 10 days ago. Take care,

      Beth x

      Reply

  3. AspieSide
    Nov 27, 2011 @ 01:57:17

    I hope you get answers soon. I agree with Deb you probably know more than the “experts”. (hugs) for it all. I hope you get the answers and supports that you need.
    Also hope your mom is improving.
    Will pray for you all.

    Reply

    • highlanddream
      Nov 30, 2011 @ 07:06:56

      Thanks for your kind words Aspieside:) I definitely believe I am an expert on my son… like Deb has said, no amount of PHd’s or qualifications can change that. It is just such a battle that seems so hard to keep fighting when my reserves are low, but I will always fight for my children:)

      My mum is receiving alot of support, which I am very grateful for. She is on a specialised stroke unit…it is only by sheer luck that we have one close by and feel very fortunate.

      Take care,

      bethx

      Reply

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N.B. the title of this blog comes from my son’s very literal understanding of ‘ magic carpet ride’ ….. he believes this to be a ‘car pit’ ( as in ‘ sand pit’) and demonstrates this with a plastic lid and toy car. The magic comes in when the toy car is covered with the lid and it disappears!

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