Parenting – Special Needs advice needed

My poor little Font Bukkake blog, all lonely and neglected.  I haven’t posted on your for so long but today I need to offload.

I try to keep my family out of my blog as much as possible, as it’s MY space, one thing that is strictly for me but today, I need to talk about my son.

My beautiful, quirky seven year old son who I’ve always known has something about him that needs support. Something that I can’t put my finger on and something that a few others have noticed. He has a special need, yet no one seems to know what it is and others refuse to acknowledge it’s there.

After years of telling his teachers, they have finally admitted that he is about 2-3 years behind with his literacy. Along the way, I have been told that I have too high an expectation of him and that I expect him to be exceeding as my daughters do academically, in other words, he isn’t as clever as they are and I should accept it rather than try and find a problem with him.  But it’s not to do with his intelligence, it’s something more.

Whenever we try to get to the bottom of it and find a special need that he shows traits of, we get close to pin pointing it, then he changes direction and suddenly develops in that area and shows weakness in a new one.

Initially, we thought he was on the autistic spectrum, something that my health visitor suggested, for she also, could see there was just something there. His reception teacher supported this theory and was monitoring his social development, his lack of emotion, inability to play, convey feelings etc Then we changed schools and my son flourished with new friends, a new confidence in being vocal and developed a wickedly delightful sense of humour.

The new school dismissed any problems and suggested that his hearing problem when he was a baby was responsible and although he was behind, he was making progress and I should give him some space to catch up.

Eventually, they decided that he was so far behind that he needed extra work at home. Tonnes of extra reading, writing and word games to be completed each night by a tired little boy, lacking in confidence and frustrated as his incompetence of reading led to a battle. Reading became a chore, a fight each night to complete and the teachers dismissed my protests of additional work being destructive rather than helping. I demanded him be assessed for special needs but they found nothing.

Finally, his latest teacher actually listened. She cut out the extra work and managed to find some school budget for him to have 5 hours a week of 1-2-1 time for reading within the school day, leaving home time to be work free and embraced my sneaky tricks of getting him to read the lyrics while playing Sing Star, or reading the food labels on the shelves as we did our grocery shopping.

She admitted that he was still two years behind with reading and writing and listened while I listed example after example of his quirky behaviour at home. She agreed that he needed to be tested again.

Today, I went in for the results. He is average or above average for every other topic at school apart from literacy. I’ve had his hearing tested and that came back clear.

The school has devoted more hours to him and have worked out a development program but can’t explain what is wrong. At first, they suggested he was tired, lacking in confidence (which is true) jealous of the baby and doesn’t get enough attention at home. They also suggested that the breakdown of my marriage may be a reason. The special needs coordinator has the gall to suggest that I don’t go enough places with him or use enough words for him to have a sufficient vocabulary. She said, if he asks about the moon, take him to the planetarium. If he asks about an animal, take him to the zoo. Considering he spends all our time together asking questions, we’d be on one long giant road trip.

After crying, explaining my guilt and fighting across my point that there has been a problem since he was a toddler, they let me write down all of my examples again.

Result being, they don’t know what is wrong other than, he has a memory problem, he struggles with understanding and his brain works differently, yet they can’t work out how, in order to help him. So not the most productive of meetings.

So I’m going to list them here. Surely, someone out there has a child exactly the same, showing traits of some specific special needs, yet not really fitting in anywhere to get the help they need.

1) Can’t follow instructions. He can’t go to his room and get his shoes. He gets to his room and has forgotten the next bit.

2)Has no concept of time – He can’t name the days of the week or the months and he doesn’t understand what they are. At aged seven, he still works on ‘how many sleeps until…’ He has 5 school days then 2 weekend days. He can’t distinguish between morning and afternoon.

3) He cannot play – He can build forts, make a wrestling ring, make a road track, then doesn’t know what to do next. When I get on the floor with action figures and try and play, he looks at me like I’m crazy. The only toy he plays with is lego. For HOURS.

4) He forgets words so uses something similar or uses rhymes. ‘loo roll’ is ‘bloo roll’ ‘Dude’ is do-ed, bedroom is dreaddroom, he sometimes speaks in a welsh accent which is totally bizarre and noticed by others.

5) He cannot explain things he sees. A teacher showed him a picture of a duck and asked him to describe its feet. He didn’t know the word ‘webbed’ so used ‘flipper paddle claws’ instead.

6) He doesn’t understand fantasy and thinks it is lying. He doesn’t get the point of telling stories that are not true, he won’t watch Harry Potter or read fictional story books and stood up in class and argued with the teacher when she read a story about Father Christmas. Something he has never understood the concept of.

7) At aged seven, he doesn’t understand what is real and what isn’t and is forever questioning this. Is Eastenders real? Well, why are the real people in it doing real things? I reply and tell him they are actors telling a story with actions and words for entertainment. He pulls a face as if the world has gone mad.

8) He gets dressed for football training, goes and plays, returns home and gets in his pyjamas. An hour later, I find him in his football kit again, ready to go. He initially can’t remember going until I prompt him with reminders.

9)He practises basic words on flash cards until they are perfect. The next day, it’s starting from scratch as he hasn’t retained any information. He can look at a word on a piece of paper and read it, then I will show him the same word in a line of a book and he doesn’t recognise it.

10) Some days every letter or number will be back to front, then other days, perfect.

11) He shows ZERO emotion. He never gets frightened, angry, excited, enthusiastic. If he hurts himself, he comes over for a hug, probably the only time he cries, then flinches when you show him affection. Any attention or affection makes him cringe.

12) He now has friends, something which took him a considerable while to find the point in. He takes so long to remember their names and sometimes he can’t recall the name at all. These are kids that he spends all day with.

13) He can’t ask a question or explain anything without it taking about 5 minutes to get his point across. If he recalls something, he starts at the end and works backwards.

14) He shows no remorse. If I have told him he has made me unhappy or I have sent him to his room, 5 minutes later, he is wandering around the house oblivious. When I ask him if he is sorry, or does he know why I am angry with him. I just get a blank look.

About cuntychoppalops

Blunder cunt - An old school definition meaning one who takes a long time to accomplish an objective due to an easily distracted mind.
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10 Responses to Parenting – Special Needs advice needed

  1. Jo Casey says:

    Much, but not all, of this is familiar to me as issues we see with my 5 year old. Does your son have any assessments of his needs yet? Something like an ‘Action Plus’ status, or a Statement of Special Needs, will identify the areas where he needs help (in agreement with you) and, crucially, provide extra funds to the school to allow them to bring in that help. L is classified Action Plus atm, and currently has a support worker who comes in 5 half days a week. Once she turns 7, we’ll be pressing to get a Statement for her.

    Could talk more about this offline?

    • They want me to keep a diary of anything he says or does, so I can fill in a CCC2 form? He is getting extra 1-2-1 support from the schools special need budget but hasn’t been diagnosed with anything in particular. They mentioned API repeatedly, with I assumed meant some kind of action plan? I’d love to know your thoughts on this. I could give you my email?

      • Jo Casey says:

        Do you want to DM me your email? Not sure what an API is – L has an IEP – Individual Education Plan.

        I’ll probably just throw a load of random thoughts and facts your way, but hopefully something helpful.

  2. @popy_1 says:

    From what you have described, it does seem that your son is on the autistic spectrum somewhere. Just because he made friends and improved at a new school does not necessarily rule this diagnosis out. Children at the higher functioning end of the spectrum are very clever at covering up their deficiencies as they recognise that they are different from other children. Children with autism general just file information in the wrong place and are unable to recall it without prompting. The speaking in a welsh accent sounds as if it could be echolalia (I’ve probably spelt that wrong) and is also assocatied with autism and other neurological disorders. You should demand that the school arrange for an assessment by an educational psychologist if they have not already done so. And also get your GP to refer him into the Child and Adolescent Mental Health Service. Also, from personal experience, try and look out for whether he goes vacant for any periods of time – my daughter had absence seizures for a while and they caused her to forget chunks of quite random information. I hope this helps a bit, if you need to know anything else, give me a shout 🙂

    • Thank you! They mentioned about when he tries to recall or explain something, his brain takes him on a random different pathway which ends up in something that doesn’t make sense to us. I’ll have a look at echolalia now. That’s been a great help, thank you.

    • Jo Casey says:

      I wondered about absence seizures too – they look a lot like daydreaming, so can be very hard to spot. I was lucky because L’s head teacher recognised them from her own sister, and EEG confirmed it.

  3. Sally says:

    Hiya
    First of all, you are doing ALL the right things!
    I’m not a parent, but have many years experience of working alongside families to support their children with varying disabilities. To me, and I’m not an expert, what you have described sounds very much like your son is on the autistic spectrum, possibly with some dyspraxia which is common amongst children on the spectrum. Can he be clumsy as times?
    The National Autistic Society http://www.nas.org.uk would be a good place to start, they may be able to help get a diagnosis
    From children I have worked with with high functioning autism or Aspergers Syndrome as it can be called, they often find that through gaining confidence they gain skills, it doesn’t mean because he has suddenly developed in an area his difficulties have gone! It sounds like that is what happened when he changed schools.
    Does he get anxious about things? It sounds like he may do, personally I would recommend trying to answer his questions (as you do), keep him as calm as possible (which you do) and encourage development in a non-educational way (which you do) such as reading on computer games etc.
    Children on the AS do not understand why they should have to read this or read that, what benefit do they get out of it apart from just finding it really hard and getting stressed about it? Far better to let it develop naturally, and it will, with little nudges in the right direction.
    One child I worked with refused to read, saying it was too hard, he couldn’t do it etc. So we stopped asking him to read books and reading books to him (he then began to associate this with learning to read) and using the rather unconventional method of playing his dad’s Grand Theft Auto suddenly started reading. This was because 1) he gained something from being able to read the instruction on screen and 2) we all (home & school) took the pressure off. He was 7 and about 2 years behind in reading if not more. He’s now 12 and caught up with his peers and enjoys reading books. His writing is still a little below average (he stresses about it being messy) but with computer skills and advancing technology he can type if he needs to communicate in the written word.
    Stay positive, you are doing everything right, schools are very frustrating unfortunately and the whole way in which getting a diagnosis and support is a nightmare. Please contact me if I can help any further ((hugs))

    • He never gets stressed about anything. Ever. When he does show emotion, it’s only slight, so he would never get to a point where he feels anxious. He fails to find the point in most things, just as you described. What’s the point in playing football, what’s the point in reading that book etc. I spent nights reading to him a book he chose. A chapter each night, just the two of us, quality time, reading all about gross science. He chuckled though most of it. When I finished the final chapter, I told him I enjoyed it a lot. His only response was… What was the point of someone writing that book? He also knows he is behind and he says it makes him feel sad, although, I don’t see a sign of sadness in him as he says it.

      Thanks for taking the time to write that, it’s really helpful and I will look at the link now.

  4. Anon says:

    The symptoms you describe sound typical of someone on the Autistic Spectrum, like myself. Unfortunately I took action too late for my local trust to provide any support but I would highly recommend (if you haven’t already) popping into your GP. Most trusts will provide diagnosis and support for children on the Autistic Spectrum, but not for teenagers/adults.

    All the best.

  5. Richard says:

    Autistic Spectrum for sure, though that’s such a general term that it’s almost meaningless.

    My son (now nearly 13) didn’t have the same symptoms but there was the same general sense of things being not quite right. His playgroup put is in touch with CSNIPS http://csnips.co.uk/ and they provided “playfriends”, who provided the one-to-one attention he needed.

    Then he moved onto Nursery and had his own Auxiliary. The first one was great- very young, hard as nails and knew just how to deal with him. She left for a full time job elsewhere and her replacement was hopeless. She just didn’t get it at all. Every day when we picked C up we would be pulled aside and told how C had kicked Mrs M in the shins. This is unacceptable behaviour of course, but what could we do? C had very limited language skills and probably wouldn’t remember anyway, the time to deal with it was when it happened. I’m sure you can imagine how hearing all that every day would grind you down.

    Eventually it was time for C to go to school. Mrs M took him to the school for his introductory visit. When my wife went to collect him she was met by Mrs M and given another tale of woe. The head of Special Needs, who must have got the measure of Mrs M, saw this exchange and explained that yes there had been an altercation, yes there was an issue with C’s behaviour but they would work on it. And they did. He did really well in primary school and he’s managing fine at secondary.

    When C started speaking he had a bit of an English accent. I’m pretty sure that’s because the playfriend was English and he responded to her. It might be worth finding out if your has/had regular contact with somebody Welsh, that will give you an idea of what kind of person your son responds to.

    I’m afraid that’s all been a bit long-winded. The main thing is to find good people. There are various organisations, local and national, charities, council departments etc. that can help- go through them until you find one that works for you. We were lucky, the people the council provided (other than Mrs M) worked well for us.

    One thing we tried early on was Eye-Q capsules/liquid. It’s marketed as “brain food” and we did see an improvement in C after taking it, but that could be a coincidence.

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