Drowning not waving

This will probably be a rant and it will probably be disjointed so apologies but I am not aiming for literary acclaim, just a means of ‘letting it all out’ and this is the only ( socially ) acceptable means I have.

J has been back at school for 4 days. The school action plus is not in place. The SENCO has been away, there has been no contact from ed .psych and I have another teacher who gives me one of ‘ those’ looks and who thinks I am a neurotic parent who is trying to make more of a rather shy son.The sleepless nights have started . The nightmares have started. And, oh boy have meltdowns come on with force. Starting from when he got up and is still grumbling now ( although calming down with his music in his room…..) I am losing my son and not only does no-one care I feel like no-one who is actually meant to help us even believes us. I have been blessed with a wonderful son with autism. But if only he wasn’t so bright and high functioning at school we may get some help. I am tired of being told he is fine. I am also tired of ( albeit well meaning) parents of other children with autism that I should look on the bright side as at least my son can talk. Yes he can talk and yes he masks his autism at school but he is SEVERELY autistic and aggressive and challenging at home. So yes he can talk, but most of that is to shout or to repeat phrases to calm himself or to occasionally express his fears ( I don’t like the dark places- shadows. Most of the time we are left to guess as he is not able to tell us.)

I feel like my family is falling apart before my eyes and I have no means of stopping it, just merely standing back and weeping as the small pieces turn into larger chunks. These last few days with M I have realised just how demanding J is. I have also realised how my daughter is being overshadowed by her elder brothers behaviours. The change in her is startling- just 4 days of being with mum. Then I feel guilty for feeling that way as I miss j terribly and the worry I have for him is overwhelming.

J and I went to an autism support group this morning where he can play and I can chat to others. Everyone is lovely but they all have people they have known a long time and I not the world’s greatest social butterfly and when you feel low your confidence to strike up conversation is sadly lacking. But people have said it took years to get any kind of support. J also had 2 meltdowns whilst there and it is hard to have a conversation whilst being shouted at and hit by your child.

So where to turn? We have no support at all. No-one to even ‘ watch the kids for an hour’ to take some respite. ( My own mother is ill and needs my support more than I need hers) We are all mentally and physically exhausted and I am losing hope and I can feel a grey cloud of despair growing ever larger and I am struggling so much daily. Even getting to school sometimes is such a battle and I have a patronising teacher look down at me and say ‘ I’m sure he’ll be fine’ as I explain to a glazed expression a small part of how tough our before school routine and journey has been. There is no autism outreach contacting me, we have no educational support, no financial support, no emotional support and no signs of this changing in the near future. We are existing, that’s all I can say and not only does no-one care no-one even seems ready to believe me to any degree.

I have thought about taking J out of school and home teaching as the stress of school is clearly too much for him. And if I just had J I would be so tempted to do that. Although I do worry as he is very intelligent and knows alot about many things- more than I could ever hope to know in a lifetime! And then of course- the social side of education wouldn’t be there and he needs help with this desperately to help him through life. I have little M too and J’s behaviours impact so much on her and I have to think of her too and she is just finally starting to get some well deserved long term 1:1 attention from mum.

If only the roulette wheel of the autistic spectrum has handed out my boy the type where he let it show a bit more at school, more help would be in place. Do I wish my son was ‘ more autistic?’ What a dreadful, unappreciative mother I am. I wish my son had the confidence, ability, whatever it is that is lacking to show people how he struggles at school. But then my son has a social, communication disorder … so he wouldn’t do that…. Please excuse me whilst i find a brick wall to repeatedly bang my forehead against….

In my more bitter moments, I do wonder if there is any other condition, illness or disorder out there that really brings forth such an utter lack of support as Asperger’s or high functioning autism and certainly one that makes the parents feel as terrible as many aspie parents. You question your own sanity, you question whether you are seeing things that aren’t there, you spend each day hoping for some support or a little brown envelope coming through your door for a formal assessment date. I cannot think of anything else where children and their parents are expected to wait for a formal diagnosis as long as this and to ‘ just get on with it’. Let me think…..regardless of the battle to help with J’s speech ( another story!) I have had concerns since he was 2 and half… earlier but this was when the concerns wouldn’t go away or be dismissed from my mind. Had to self refer to GP. Appointment for paed took approx 4 months to come through, 1st appointment saw ‘no cause for concern’ but to come back in another 6 months. Then referred for a 12- 18 month waiting list. Where this can take up to a year for assessment I am told. So from our initial concerns at age 2, J could be what 6 years old before he gets any real help or at least a formal diagnosis? How is this right, how is this fair and how is this acceptable for all those families living through this; as I know I am not alone. Some people have told me that I should be grateful as he doesn’t have a life threatening condition. Well, I am, very. But he has a quality of life limiting condition and the fact my boy and his family are being destroyed from the outside in seems to not be a priority medically or educationally.

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5 Comments (+add yours?)

  1. Deb at aspieinthefamily.com
    Sep 10, 2011 @ 20:14:42

    Rant all you like; you need to get this out rather than it fester inside. I understand everything you’re going it through because its what we went through including many unsympathetic comments from people. One of the most cruelist comments I ever had to endure was a psychologist who said to me to be grateful that he can talk. My son may be able to talk about things that he is interested in but he cant express his emotions, understand language or interact with others plus a load of other difficulties. His verbalisation has conned many people, including professionals, into thinking that he is mildly autistic. I see a child who is significantly autistic and who I doubt will be able to cope without support throughout the rest of his life. I hate the categorisation of autism because it stigmatises and denies some autistic people (notably the ones labelled mild) the resources and support they need to have a quality of life. In my town the higher functioning autistics are very badly let down; they get very little health and educational support and the authorities wait until a crisis happens before specialist provision is given. It is a shocking disregard for human rights IMO.

    I wish I could say something positive but your story is so familiar. all I can say is that you have to fight, nag and challenge in the nicest way but hold on to the thought that it can lead to positive outcomes. Equip yourself with every bit of knowledge of the SEN system and ASD that you can, so you can counter the so called experts who may be biased towards keeping within budgets. Record your son’s behaviour and the triggers so you have evidence and, if you haven’t already done so, apply for disability living alliance. It all helps. In the meantime you need some support so you could try the National Autistic Society who may be able to give you some ideas for respite and support for you and your family. They also do a Help programme which is like a mixture of support/training on specific issues which you may find helpful.

    ((hugs)) Deb x

    Reply

  2. Deb at aspieinthefamily.com
    Sep 10, 2011 @ 20:18:14

    Forgot to mention that one of my favourite bloggers and a lovely source support to me http://theramblingpages.blogspot.com is based in Yorkshire I think and has a young son with ASD/ADHD. You may want to check out her blog.

    Reply

  3. highlanddream
    Sep 11, 2011 @ 07:52:00

    Deb, I can’t thank you enough for your continued support . You are under so much emotional pressure yourself and yet you have still time to support others like myself. i know we don’t know each other and maybe this sounds overly dramatic but I genuinely think you are the only person on this planet that understands what we are going through and I can’t tell you what that means to me. Thank you for your advice, I will get in touch with NAS tomorrow and I have looked at the blog you have suggested and many things sounds o familiar:). I can’t apply for DLA as I have absolutely nothing to supply as evidence apart from my own diary and video footage. J is no longer under speech and language, I had an appointment letter from the paed in July but I cannot find it and it doesn’t say anything about J’s difficulties. So if they contact school as I am sure they are bound to… well we both know what school would say! I may have a word with the ed psych but I am not holding out much hope.

    I think I really am going to have to get more feisty. But even this concerns me. At j’s 1st nursery I asked his nursery manager when his IEP would be in place ( was told this would happen- this was due to his verbal dyspraxia) and the nursery manager went in to full blown panic, got in touch with the SENCO ( didn’t even know of J) and his SALT and end result… a pack of lies, everyone closing rank and I have written on my son’s notes that ‘ I went into nursery school being aggressive!’ I swear i wasn’t, I was just a very concerned parent. SO I am in catch 22- I do nothing my son receives no help… I get more pro-active , as I usually do and it gets everyone’s backs up and I may alienate all those who may have helped J in the future. Ack I hate this situation.

    Anyway, I am ranting again! Thank you from the bottom of my heart. Take care,

    Beth x

    Reply

  4. Jodie Smith
    Sep 11, 2011 @ 14:06:29

    Hun I can so sympathise. I have often thought I wish my daughter was more autistic so it was more obvious and more easily diagnosed. she’s perfectly capable of communicating her needs, wants and thoughts, but has such poor social skills. Fortunately, the playgroup she was in from 2 1/2 picked up a problem before I did and the playgroup is attached to the school and nursery she now attends so the SENCO has been involved from early on. Our SENCO is lovely and so helpful and i really don’t know what I’d do if I was on my own to sort it out. She had a referral to a paeditrician who spent 15 minutes with her and said there’s nothing wrong with her so now we’re going down the SALT and MAPPS route (don’t you just love the acronyms that get thrown at you?!) SALT have agreed there is a problem so now we have to go to MAPPs and possibly ED Psych.

    My husband works away from home and I have a 3 yo and a 10 month old so understand needing respite. fortunately my mum gives me a lot of help while my husband is away. but I can really feel how hard it is for you. My daughter needs 100% attention from 2 adults and I can only give her 33% of 1 at home.

    Can you find another more helpful school? Feel free to drop me a line if you need some support. My twitter ID is @meetjosmith if you are around on twitter, or my email and blog below.

    xxx

    Reply

  5. highlanddream
    Sep 11, 2011 @ 20:03:09

    Hi Jodie,
    many thanks for your comment and your support, i so appreciate it:) I am so glad you have found some wonderful support- it is so good to hear it is available… I just need to find some 😀 I am really beginning to think i should just take my boy out of school- he isn’t legally obliged to be there until he is 5 anyway and this weekend has been so difficult, Meltdowns all day yesterday and today he has been in a depressed state and was violently sick too- no other sign of illness and i think it is anxiety induced. My poor boy is only 4 years old- he should be playing with his friends and riding his bike and having fun for goodness sake, but my poor boy is making himself physically ill now with the anxiety of school. How can I allow this to happen? 😦 What is MAPPS by the way?…I can’t keep up with all the acronyms!

    Anyway, huge thanks again. All the best to you and your daughter- i am going to have a little tipple and a long soak in a bath whilst my little ones are sleeping soundly ( for now!) Take care,

    Beth x

    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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