When it comes to being a parent of children with additional needs I guess you notice things more. I am no way in saying that you become an expert in the condition but I personally think it becomes more likely you will spot others who you believe are the same. Sometimes this insight is welcome but other times it is best to keep these opinions to yourself – dependent on which of the parent types that the child has.
Different Parent Types of Children with Additional Needs
I believe there are basically four types of parent when it comes to children with additional needs and they are:
Parent Types 1 – The Fighters
These are parents who recognise that something is not quite right and fight tooth and nail to discover what it is and access all the help they can for their children.
Parent Types 2 – The Accepter
These parents realise that their children might not be quite the same as others but just accept things how they are. They probably do not even want a diagnosis for their child as they just see it as an unnecessary label which isn’t particularly helpful.
Parent Types 3 – The Lunatics
These parents are nuts – they think that their children need to be cured and do stupid things such as force them to drink bleach. They genuinely believe that their children will be better off if they can get rid of their additional needs.
Parent Types 4 – The Deniers
These parents are walking around with blinkers on and will just not accept that their children would benefit from additional help. These parents ignore their children’s behaviour or make excuses for it. Some may think that there is something wrong with having a child with additional needs (which quite clearly could never happen with a child of theirs) – whilst others just do not think that this is the case (even when there are so many obvious signs to others).
Changes for Schools that make it Easier to Help Children Regardless of Parent Types
Previously the parent types of a child mattered when it came to a child having additional needs and fighting for the right support in school. I have previously written about whose responsibility is it to ensure that it is identified and put in place. But that is now changing from what I can gather.Well from what I can gather now schools have more control in helping all children – especially those with type 4 parents who are not going to help the school access the funding that they need. From what I can gather any additional money which is given to the school due to The Sensory Seeker’s EHCP does not have to be spent solely on my child. That as long as whatever it is the money is spent on helps him then there’s no reason why other children cannot benefit from it also. I haven’t thought too much into it – but maybe if they built a sensory room – or got in sensory toys or ear defenders – this sort of thing can be shared. Maybe I have got this wrong and I don’t think it is unreasonable – just annoying that type 4 parents aren’t able to help with helping the schools to access this funding in the first place.
Do you agree with these parent types? Can you think of any others? Do you identify with any?
Honestly whose responsibility is it for making sure that every child receives a fair education? As it seems to me that the quality of education falls down to the parents. Of course this could be a whole topic of private vs public and grammar schools but I am in this instance talking about the rights of the child with additional needs.From the off there seems to be a divide for children between parents who recognise and fight for their children’s educational rights (and get them an EHCP) and those who do not know what they are doing, or are less willing or capable to fight. Shouldn’t training be provided to ensure that early identification is made for all children who need to access the additional help? Too many hoops have to be jumped through to prove it isn’t just bad parenting before actually getting anywhere when you are prepared to fight – so no wonder people give in – is it fair on those other children? Children who may eventually be caught by the system – but how late and at what cost to their education? But even after identification the battle does not end there. With meetings and appointments which usually relies on the parent educating those being paid to help on their child’s condition. Having to read up every piece of information they can and fight to have the right support in place.
Maybe this doesn’t happen as often as I think – perhaps we are the unlucky ones. Personally I feel The Sensory Seeker is very lucky in that I am able to best support him – but what about children who don’t have that? My renewed annoyance comes from the annual EHCP review.
From the off I felt patronised as the SENCO kindly explained how it was the first EHCP annual review (because let’s be honest it was SO different from a statement review right?). Then I had to go through and correct any errors – you know like making sure they had identified the right child which includes the right date of birth! Okay I am being harsh now that was such a little slip right. But then we came to the part about the family’s views – the work I had put in before the meeting – and the SENCO had no idea what I meant when describing the sensory needs. In fact she was quite sure that he didn’t have any!!!! Deciding that I would just deal with his meltdowns at home as he apparently was coping in school I almost just let her remove them from the EHCP – I mean what would I know about Sensory Processing Disorder compared to the trained SENCO? But as luck would have it his class teacher popped in and agreed that yes he did have sensory needs and straight away was able to give an example (you can read more about that meeting in the post about them not wanting him to be different).
I was advised that the SENCO would send me a draft copy to approve before she sent it off. But that never materialised. What did come was a letter saying that it had been received and that my draft copy would arrive shortly. Of course that arrived giving me 15 days from when the letter was written and not received to make any changes. IN THE SUMMER HOLIDAYS! I kid you not – I have no-one to go to for advice, I am pretty sure the SENCO is not in school and I have 4 children (3 of whom have additional needs) at home with changes they don’t adjust to and now I need time for this! But surely you think I just need to read it through and agree with it – because I already sat through the meeting and discussed and agreed things – right? Wrong big fat wrong. There are so many unbelievable errors in this draft it is untrue. Including matters such as who his key worker is and even what school he goes to! Never mind moving on through the report. Somehow I am going to have to find some time to go through it all. And then what – do they just accept my corrections? Doesn’t the SENCO actually have to do that? Or does she get a draft copy of my amendments and have to approve them – meaning that it isn’t actually all sorted for September? I am sure in The Sensory Seeker’s case it doesn’t matter as he already has one but what about those children sorting out one for the first time?
I know I may come across as angry at the SENCO but I am not. She is a lovely lady and am sure she is trying her best. It is the system that is letting these children down and parents who are already under a lot of pressure are just further feeling the strain.
The eleven plus and special educational needs can be a bit of a minefield. With our oldest he should have got into a certain school but on the day did not do as well on the eleven plus tests as we expected for his capabilities. He had no provisions made for his Asperger’s Syndrome (I have since heard of others having a separate room and longer time), not even to become more familiar with the building. But he was always a very able child and “grammar school material” and we knew that the eleven plus would put no added pressure on him. But the time is getting closer that The Sensory Seeker needs to think about high school and he assumes that he will take the eleven plus following in the footsteps of (what will be) all three of his older brothers. The trouble is he has a Global Developmental Delay and his Sensory Processing Disorder also makes it harder to learn new things. So the question is what to do?Annie Spratt
Do we let our son with Special Needs take the Eleven Plus?
Do we let The Sensory Seeker sit the eleven plus tests, in an environment that is most likely going to be difficult for him, so that we have given him the chance and opportunity just like all our other sons? Or do we make the decision that the test/school would not be suitable for him. Which will knock his confidence more – trying and not succeeding, or not been given a chance in the first place? I mean he is a bright lad and he may even surprise us! He has a few years to go yet and may even close the gap and catch up with his peers. He works so hard. Or when the time gets closer he may just be happy to move up to the local comprehensive school – which he is familiar with because of after school activities and will know lots of people there/going up. Oh how it would be wonderful if they never had to grow up!
Of course I have been suggested another option of paying for him to be tutored (which I haven’t done with any of my other sons), but then I really would be worried that the work would be too hard once he passed the eleven plus entrance exam. That then he’d end up switching schools anyway and then find it even harder to settle as the new boy. Other people have suggested this would be just filling the gaps in his knowledge where the education system has failed him.
Has anyone else been through anything similar? Any thoughts please?
Inclusion what do schools think that means? I recently went to The Sensory Seeker’s annual review of his EHCP to find out that his school means that they don’t want him to be different. I guess it is a feeling of once again coming back to rubbish parenting really, as it sounded like that the only thing causing any problems is him being treated in a way not like the others! They said that even with a one-to-one teacher he hasn’t made “extra” progress (just in-line with his peers) and that actually he needs to be encouraged to be more “independent.”
They did not seem to even understand Sensory Processing Disorder (which unfortunately is not a diagnosed condition in the UK) so it is no wonder that they don’t “get” that his one-to-one helps The Sensory Seeker deal with sensory input that may distract him and need his focus brought back. In fact the SENCO and his teaching assistant didn’t seem to think he had ANY sensory needs at school – which I found really surprising. They were thinking about just taking that section out of his EHCP all together. I thought that there was no point in arguing with them after I tried to explain some of his difficulties, because they just said it did not happen. Or well, that time he was hugging someone else all the time was okay because that person wanted him to do it. Of course the good old social stories came up – as obviously if he understood that he couldn’t just go around touching people then that tactile need will just disappear!
His EHCP actually has good guidance in it about his Sensory Issues from the Occupational Therapist, but because they discharged us they no longer come to the meetings. I can’t even really get her involved whilst the school are saying there aren’t any issues either! Luckily his class teacher was able to quickly pop in to the meeting at the time we were just about to move on to the next bit of the EHCP. She was then asked about The Sensory Seeker’s sensory issues (in a tone that he did not have any). But, thankfully, straight away she said that yes he clearly did and came up with an example straight away. In fact, ironically, it was to do with their sensory time where a few children go off to practice writing. She said that music was played to help them feel calm – but actually it stopped The Sensory Seeker from concentrating. That he was able to let her know it was a problem. The SENCO again was immediately in the frame of mind of not wanting him to be “different” so asked what the teacher did to resolve it. The teacher explained that they just turned the music off! That they didn’t *need* it. It is a shame that next year not only isn’t she his class teacher but she is leaving to go on to another school.
We will have to see how things go in year 4 because I am concerned that they are just knocking his confidence by ignoring his sensory needs and treating him no differently – such as setting him the same homework as the others for example. And then when it is not complete (because he has struggled with it so much, or not in the right sensory frame when he has come home) he is then punished (like the other children) by missing break times. I fear that this will then further impact his social skills and relations with his peers -especially as he becomes more aware of things such as being the only child not invited to parties. They have also mixed up the children in his year group and this change has already upset him. Unfortunately he was sick and missed move up day too – so we shall have to see how it goes. It isn’t all bad however, and I am not blaming the school it is because the knowledge just isn’t there. Things I mentioned (such as his inability to use a dictionary as he does not know the alphabet) they tried to help straight away. He seems to have a good relationship with his TA and in our opinion has helped him come on leaps and bounds.
I really do hate the school run because it means interacting with people. When I come home I am actually drained to the point where I have to sleep. I have even started taking antidepressants and fighting off the need to recuperate until the afternoon. But it is no good I can only reset myself with sleep. Then I have to do the school run again. I was put on these tablets fourteen months previously when I went to ask the doctors about a referral for seeing whether I have Asperger’s Syndrome. He told me it didn’t matter and that I could tell people I have if I liked – and wrote out the prescription. Ever since I have just been taking the tablets and paying for repeats. But still nothing is easier.
This morning on the school run a random man who works for the council called me a bully. I asked him what he meant and he laughed and said I had stolen my son’s scooter. I told him it was mine. My son was on his own scooter and mine (adult size too) has flowers on. I don’t get it – was he trying to tell a joke? People always have to comment on my scooter – there’s always something. But it isn’t just my scooter – it’s my clothes and other things too. I get hot really easily and hate to overheat. I was wearing shorts the other day when the sky was grey but it was still really warm. Again always said in this “jokey” way was whether my weather app was wrong! I am sure it was a joke but I can’t help it I just feel the need to explain that I get hot and can’t cope.
The doctor said that it was unlikely I was on the spectrum because I was aware that people treat me this way. That I want to fit in. He said I just haven’t had the right role models – teaching me how I am meant to behave in certain situations. But I thought that social skills were meant to come naturally? He said I could make a list. But I have no energy all the time. Surely someone should just be able to assess me and see. Why does it always have to be proven? I have begun to accept myself whether I have or haven’t got Asperger’s. Explaining to people that I don’t always say the right thing, or do the wrong thing or even get what is expected of me. It is up to them how they behave back towards me then. I do not know what more I can do.
Ginny Moon is a teenager with autism who was taken away from her mother when she was just nine years old. In the story Ginny is thirteen years old and in her fourth foster family (which she calls Forever homes). Finally she has found a family that loves her but is that all about to change now that her Forever Mom and Forever Dad are having their own baby?
The Original Ginny Moon really is a story that will keep you wanting to read more as you get to know Ginny and all her ways. You will be hard not to fall in love with Ginny and be proud of her. The Original Ginny Moon really is a story that will keep you wanting to read more as you get to know Ginny and all her ways. Feeling sad when she feels she doesn’t belong (-Ginny) and understanding the difficulties she faces living with autistic spectrum disorder – that sometimes make her just too much for other people to be able to handle.
Ginny likes numbers and they help her make sense of the world. The book is written in diary format telling is either approximately or exactly what the date and time is for each entry. Ginny starts each day with exactly 9 grapes, loves Michael Jackson, can only answer one question at a time and always has green eyes. Ginny is 13 years old but turns 14 during the course of the book, and in that time we come to see that Ginny has overcome so much and means well.
Ginny struggles to communicate why she needs to escape from the Blue House (her forever home with Brian and Maura) to go back to Gloria (her biological mother) where it was such an abusive and unsafe environment for her. Ginny tries to explain to everyone that is to make sure her Baby Doll is safe (as she left it in the suitcase before she was taken), but no-one seems to take her seriously.
Benjamin Ludwig has written this beautifully narrated as Ginny – letting us clearly see what is inside her head and the reasons why she behaves in the way that she does. She clearly explains what things mean – which are mostly based on what she has learned from what other people have told her. But she is still confused by other things – that as a reader we know she hasn’t got right. Other times you realise that you have made the wrong assumption that she hasn’t got it right – and that even you have got Ginny wrong – just like everyone else!
I think this book is great to understand the mind of a teenager with autism, the fostering process and its difficulties and anyone who just wants a good book to read. Plus it gives a clear message about how not everyone is able to self-advocate and make their voices heard and their needs known. The short diary entries make this an easy to read and fast paced book – but even though you can read it in small bites – I am not sure it is something you will really want to put down.
I had a proof copy of The Original Ginny Moon for purposes of review – and honestly it is that good, opinions are honest and my own (although I am sure A LOT of people agree with them too).
Sensory Processing Disorder in Italy was always going to be a bit different than at home but The Sensory Seeker coped amazingly well during our stay.Of course there were times when he just didn’t cope, but there are some things I think made it easier for him and other things that I wish I had known before we left for Italy, that would have made things better for all of us. The main thing for us was to just make allowances: Letting him sleep in bed with us some nights whilst we were in Italy for example. Obviously every individual with Sensory Processing Disorder is different but hopefully some of this will help if you are planning on travelling to Italy.
Flying with Sensory Processing Disorder – What we learnt on our travels to Italy
So our flight to Italy was the first time we had taken the boys on a plane. The hardest part was the fact that the electrical devices need to have battery to go through security so the boys were unable to play with their iPods and 3DSs until we then and we weren’t prepared to risk them having them confiscated. In hindsight I wish we had taken the in-car DVD players – these could have been used in the car and again once we were at the resort (as there was no television) and they could have been packed in the hold. You should take into consideration the time of the flight – would it be easier if it was at a time when the child will be likely to sleep (remember this could be delayed and they could be overtired in the airport). Luckily our flight to Italy wasn’t a long one (or shouldn’t have been before all the delays). We did not take advantage of the flight’s special assistance but this means that we could have had priority boarding so that it was not as chaotic and noisy when he went on the plane. Saying that in Gatwick Airport we went through Family Security and this was much less of a wait and felt less intimidating than other security checks I have previously been through.
Tips for flying to Italy with a Child with Sensory Processing Disorder
Obviously have some entertainment that does not involve plugging in – a book, crayons, LEGO etc.
Give them a lollipop for take-off – this will help with their ears as well as giving them something to distract themselves with.
Decide whether you think they would be better with a window seat or not, if they need extra room, or easy access to the toilet when booking your seats.
Carry a charger (and adapter plug) with you – all the trains have somewhere to charge your devices and in Pisa airport there was free charging (with a lighting cable).
Of course let them know what is happening and what to expect in advance. The Sensory Seeker was selected through security and had to take his shoes off. I think because we had talked about everything with him it made it much easier. Speaking of explaining things we were delayed by 2 and a half hours on the way there and 3 hours on the way back – although we were past security and the electrical devices were able to be utilised (and charged) so this wasn’t a problem for us.
We took special things – a travel cushion, a soft throw and his favourite teddy.
Things to consider in Italy with Sensory Processing Disorder
I think it is good to discuss things that are not quite the same – such as crossing the road. We discovered that just because you are crossing the road on black and white lines does not mean that the drivers have to stop! Here are some tips from our visit:
Plan where you are going and figure out where the toilets are. Book in advanced where possible (on the train this also means you do not have to validate your ticket before getting on). This can not only save you money but time too – some of the queues are actually really hideous. Find out which places are busy and which are quieter. You have to pay for toilets, so carry plenty of euros and 50 cents with you. I wish we had put on a map where they were located too.
AttractionTix offer a range of discounted and beat the queue attraction offers: We chose to review the Rome Hop on Hop off Cruise. As there was a bar and toilet on board it meant that we could literally hop on if The Sensory Seeker needed the toilet desperately without having to worry about where to find one. Getting on and off the cruise was straight forward and simple and The Sensory Seeker loved the narrative about the area as we went round. Particularly when we were near where Romulus and Remus were left in a basket on the Tiber River as babies (which he had learned about in school). It also allowed him to sit and calm down as we were taken around closer to the next major attraction we wished to visit. Children under 10 years old are also free! Just be careful when going upstairs as if they are too seeking they could end up going overboard.
Be aware of the street sellers. One guy came and put necklaces on the boys for “free” and tied a piece of string around my arm even though I kept telling him no. They he was quite forceful saying he needed money for food. My husband gave him back the necklaces and we gave a euro for the string as I couldn’t get it off – he was still trying to get money out of us, but my husband was quite verbally forceful back. This experience was unpleasant for all of us but particularly The Sensory Seeker. They seemed to be where the tourist attractions are most. Try to avoid eye contact and do not get into conversation with them.
Italians do not eat at the same time as us here in the UK. At 5pm we found that they had not long closed up from lunch and could not get dinner. Supermarkets we personally fund difficult to locate and a sandwich meal deal cost us almost as much as eating out in a restaurant!
Checkout the weather – we went in April and it was warm enough for us with just a bit of rain but did get really chilly on some nights. The mornings start out really bright though – but most places had wooden blinds blacking it out.
The sirens sound different in Italy – maybe listen on YouTube before you go so it is not so startling. Or use the headphones/ear-defenders.
Tips for sight-seeing in Italy with Sensory Processing disorder
First of all have a clear plan so that they know what to expect and when. Try to let them have input into what goes into this. For example if they just want to go swimming maybe you could incorporate that into the afternoon or evening for them.
Give them opportunities to allow them to do what they need with their bodies – run, spin, swim etc. Parks are good for this (and obviously swimming pools).
Ensure you plan in some quiet areas to take a break from noise/busy tourist areas.
Listen to them – our son needed breaks and said it was because his toe hurts. I am pretty sure that actually he was sensory overloaded and needed a time out.
Establish clear rules of what behaviour is expected and any rewards/consequences. In our case this largely involved a lot of Gelato!
They may be unable to deal with their feelings (and possibly become upset or aggressive). Be aware that they may regress (eating with their fingers, need reminding to go to the toilet). Remember that this is a big deal for them and try not to chastise them for their behaviour, instead try and find ways to help them cope. We know that with The Sensory Seeker letting him talk about his favourite computer game helped him calm down. You can also use hand gestures to get your message across, when they do not appear to be responding verbally, or carry visual aids.
Don’t beat yourself up if you did get stressed though – it is hard for us parent/carers too and we are only human. You sometimes may wish to explain why they are licking the locks on the public toilet! The nearest thing I could find is: “Mio figlio non e’ cattivo. E’ autistico. Per favore, siate comprensivi” Which translates to “My son is not being naughty. He is a child with autism/He is autistic. Please show some understanding.”
Consider carrying packed lunches so they can be eaten in quieter locations – and it will alleviate the problem of finding somewhere to eat when they are hungry. Alternatively there are many Pizzerias where you can buy pizza/sandwiches take-away. If you carry a water bottle you can also have an instant drink – plus there’s water fountains around to refill them too.
You could get the individual with Sensory Processing Disorder to carry the bag for the pressure (weighted work).
Also pack ear-phones; a hat and sunglasses; something to do with their hands/keep them occupied (maybe a map to hold or a toy).
If you have any questions or experiences about visiting Italy with Sensory Processing Disorder I would love to hear them in the questions below.
Thanks to AttractionTix for the Hop on Hop off Cruise.
Swimming is important for those with Sensory Processing Disorder as they may either be afraid of the water or not aware of the fact they can drowned – and therefore having the ability to swim may save their lives. Swimming is also good for developing fine and gross motor skills/motor planning, attention, listening to instructions, communication, social interaction, group work, and self esteem.I remember when The Sensory Seeker first went into the pool he loved the feel of the water so much he just tried to keep going as deep as he could (with the poor lifeguard keep bringing him back). It is such a great skill to learn and can be life changing. We have given The Sensory Seeker a mix of group, individual and intensive lessons and he has really come on a long way. And it is not just his swimming that has improved.
Swimming can be in lessons in a pool or the sea, or just family fun. Of course you can help slowly build up in the bath – or swimming could help develop water confidence to go onto the bath or shower!
You have to consider whether you are taking a Sensory Seeker or Sensory Avoider. There are going to be lots of sounds and they echo around – both above and below the water. Different times of day, and indeed different days, will have more or less sounds dependent on how busy/popular they are. If you have an Avoider you can buy swimming ear-plugs which may help to block out some of the sounds. Also consider the changing rooms – does the complex have a family change which may be more isolating and quieter?
Ideally it would be good if pools offered quiet times to swim such as the Relaxed Performances offer, or the Autism Hours that Supermarkets and now offering more and more. Or just to be able to show the individual around so that they can get used to their surrounds/what to expect. The trouble is more and more we are not allowed to take photos of the pools – but check their websites to see if they have any still or video footage of what to expect.
When it comes to the visual sense it depends on where you go. Some pools are literally places to swim with just water and better for Sensory Avoiders. Others can have lots of stimulation including slides, tipping buckets, water spraying out, wave machines, waterfalls, inflatables, toys, Seascooters and so on. Just be aware of how much time you spend there as to whether the individual with Sensory Processing Disorder becomes overstimulated.
I guess the tactile sense could be very problematic if you have a Sensory Avoider – from the touch of the costume to the feel of the water. You may want to consider which is harder for them – the costume or the water – and then decide whether you get one that covers them up (and a swim hat) or one that allows them to be as free as possible (check the pool rules as to whether they can wear “Bermuda style shorts”). They may need to gently become encouraged over time (especially if they are sensitive to the temperature of the water). Overall this may help with other hygiene issues as they get used to the feel of water on their body and overcoming the fear of putting their head under water – which will inevitably help with washing their hair.
Swimming and Proprioception(Sense of body position, from information received through the muscles, and joints – force, speed and control) and Vestibular Sense– Movement and Balance/Gravity
Swimming is good for Proprioception (muscles and joints) body positioning/awareness, movement and balance (vestibular). You may need to consider the other people around you but usually there is plenty of room. For Sensory Seekers pools with lots of slides and action can be great for this – and pools are certainly great places for them to move about a lot! Seascooters are great because it can really pull them along, moving their body right under the water – whilst they retain some control.
Swimming and Olfactory (smell)
The only problem I can think of with smell is the chlorine in the pool (and possibly the smell of other people). Apparently there are certain pools who do not use chlorine if this is a problem.
The Sensory Seeker and Swimming
As I say we have had to try a variety of different types of swimming lesson to help get The Sensory Seeker where he is today. He doesn’t always listen and can be slower than the others (in terms of time to actually swim across and picking it up). But when we consider how far he has come, and how well he is doing it is an amazing difference. Most importantly he can swim pretty well now. He loves the water – especially going underneath. In fact his favourite thing to do is bob up and down under the water vertically (it actually looks like he is drowning and am sure scared many a lifeguard!). At the end of the day we want him to see swimming as a fun activity so also regularly go as a family and actually travel quite far to visit pools with great slides and things to do.
Swimming and the Max Card
With The Max Card you can get discounted entry to pools such as The LC Swansea, Wales. At The LC Swansea it costs only £3.00 per person on presentation of a Max Card. There were no problems with this at all and the member of staff was very friendly and helpful. There is a carpark which offers disabled parking. It is £1 an hour and the pool will refund £1 (a swim session is up to 2 hours). There is a white-knuckle rollercoaster waterslide, an aqua slide, an aqua tube; wave pool; whirlpool; lazy river; min-slide (although great fun for adults!); tipping buckets, fountains and water spurting out from various places. The water is set around 31 degrees Celsius and the air temperature is around 32 degrees.
Our family was given a Max Card for purposes of review. To find out more about Max Card visit my previous post.
As a parent there’s no real breaks. You are not allowed to lose your shit. You decided to have a child and that’s the end of it. Having a child with additional needs is no excuse – there are no allowances. I was reminded of this fact after finding it too much to cope with the Summer holidays alone (as my husband was working) with 4 children – three of which (it turns out) have additional needs and my house just falling apart – never mind the mess. Feeling so tired, exhausted (physically and mentally) and every burden weighing on my shoulders. I had no idea that this would lead to attending a Child Protection Conference in order to keep our children!
I discovered that the boys don’t like change – even if it is rewarding them for something. So can you begin to imagine how hard the holidays are for THEM? It was the summer of additional challenges, as our oldest was moving out to University – but not really doing much about it. He wanted to go without any real mention of his Asperger’s – just trying to get on with life – but unfortunately his condition had other ideas. In retrospect having my hair cut from reasonably long to spiky wasn’t the best idea. I was finding it all a bit much to cope with and I didn’t feel it unreasonable to ask for help (from my family) – simple things like the children flushing the toilet after themselves and not urinating all over the floor! After all the youngest of them was 6! Respite has never been an option for us as I am aware that there are children with needs far greater than mine, whose parents are not even getting this kind of support. Extended family never really have the children, not even for a day – well actually apart for the one child. putting added pressure on him (this has since been addressed). Just wanting, no needing, a little bit more help but it was not coming.
It is all a bit of a blur now, and I don’t remember why it got on top of me so much more than any other year but it did. I can’t think about my kids as being a burden because they are not – but their needs were just too much for me to handle on my own. My basic needs just were not being met (I am talking being able to go to the toilet without something happening that meant I need to rush to ensure their safety!). I guess it wasn’t what I expected to be doing with children of their age. Of course they were just children. I should have been able to tell myself that it did not matter. Who cares if there is stuff everywhere; mud piling up on the floor from where the bikes have gone in and out of the house; why should my children load their own dishes into the dishwasher right?
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And then I snapped. . . . .
You see no matter how many days I coped with goodness only knows what, that one day when I just couldn’t take it I threw a toy across the room and screamed how I was fed up. I threw it so hard it made a tiny mark in my laminate flooring. The kids were upstairs and so they would have heard it. I felt awful. But never really thought more of it beyond that day. I apologised to the kids and got an earlier night. In fact it was completely forgotten about until some 3 months later when my life changed so much.
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The Beginning of the Nightmare
I don’t really know where it began – but one day I asked our 12 year old son to load the dishwasher which resulted in him punching me rather badly. He then put a picture on Instagram basically saying I got what I deserved. I did hit him back in order to defend myself before pinning him down. My husband arrived and defused the situation. I said something stupid which was meant the way it sounds and this resulted in further foolish behaviour from my son that ultimately led to the school ringing Social Care on us. Initially a nice guy came out, and this was the first time anyone had mentioned that they thought my son has special needs. The guy from social care (from the RATs team) tried to pass us on to the appropriate team to get help for our son and assured me we were doing all the right things. We were unaware that they had decided to close the case and were desperately waiting for help. The only reason someone else came was because I phoned the police when our son attacked me again – and the case was re-opened and passed on to someone else.
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I feared that someone had done something to our son (due to things he was doing online but I will never know because no-one could get him to talk and they just gave up trying to find out). I was honest about everything as I wanted help – even just to be told coping strategies, so I told Social Care what I did the day I snapped. I was worried that it could be my fault (which is a nicer thought than him being groomed online) that I brought my pre-teen son’s behaviour on myself (there was a lot more things he was doing but I will not go into that here for his sake): They agreed it was.
Before I knew it there was a team from the Diversion from Care and Placement Team – talking about doing things to prevent my children going into Care! I have said before how I feel I may have Autism but never before have I truly felt this – thinking of only I could be less honest and say/do the right thing. I was looking up every bit of information I could and my husband was getting stressed that I sounded too textbook. Social Care had nothing to offer in the way of help – they came to see if they could get us to do family things together – but actually ended up suggesting we do less. You see my family are my life and I plan so much to enrich their lives and ensure they feel loved! The new Social Worker saw things differently and decided that my children were at severe risk of harm of emotional abuse from me! Even the fact that I have provided them with a desk each (which are covered in toys) as I am apparently too pushy! Do you know how that hurts – even now is that she was saying that it was because I was abused as a child: That I did not even realise that I was doing it. Fearing she was right and that I was oblivious to what I was doing I waited for help – only stopping myself from suicide because I knew that that would help nobody. I can fully understand the lady who has run away with her children because the thought entered my head too!
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I found myself in a Child Protection Conference defending my right to keep my children. Absolutely everything brought up and used against me. From putting my children in danger by putting their pictures online, to the fact that my son’s notes had not been updated over a medical matter – so I was blamed for not caring and it ultimately being my fault. Feeling a sinking feeling as they recalled that my son broke his arm badly when he was only four years old – and I had no witnesses around. Things I said twisted, people saying incorrect things in front of us. I had to stay quiet so as not to come across as over-emotional (again something they said as I was SO upset about the experience). The whole experience completely disrupted my family (they had to keep going out and pulling the kids from school and questioning them) – did I mention that they do not cope with routine changes. Plus they wouldn’t consider that The Sensory Seeker has a disability (despite the fact that he had a statement of educational needs) because he was NOT DIAGNOSED AS AUTISTIC. So when he apparently said that he heard me say that I wanted to kill his dad it was used as actual evidence of how evil I am (I hadn’t even said this at all!)
Parents are meant to get all the reports 48 hours before the Child Protection Conference – but this wasn’t the case. The Chair hadn’t even got all the information at the start of the CP Conference – and some of which we were blamed for (although we were unaware we had to give it!). Our son was asked if he wanted to go because of his age but instead sent an advocate. I didn’t think it a good idea he went especially some of the things said about him and us. In fact it was even suggested that The Sensory Seeker’s difficulties are due to ME emotionally abusing him as he did not get an Autism diagnosis! Thankfully his head teacher knows how hard I have fought to get everything possible to help our son and how much progress he has made with this support and backed me up. Still absolutely heartbreaking to hear, and what if I wasn’t so forthcoming (or pushy as teachers are calling parents that fight for support!).
The Child Protection Conference ends up with a vote – everyone around the table says what their verdict is and the majority is the deciding factor. As I sat with my pen and paper tallying up the results it came down to the last person. People who didn’t know us, didn’t know the facts and certainly had things wrong! Luckily for us it went the right way – but frightening to think one more vote and things would have been really different. We did not receive any help, support or advice. The social worker passed us on to a family worker and she had fleeting visits at our house before passing us to a charity who just had one meeting at the school. The awful thing for me is that they closed the case down after our son got accidentally burnt with an iron and he beat me up one more time.
We never considered our son to have special needs but after the first social worker suggested it, so did the police, the school and CYPS – but no the latter won’t assess him and also closed the case down. He hates seeing people and has calmed down so much that we just don’t want to annoy him. There was a lot of things that went on that year, and one of them was that he got kicked off the school bus (apparently for persistent bullying but it was the first time we had heard about it). Social care were really keen that he caught that bus again but we decided against it. I later heard that the bus driver was taken off the route as he was found to behaving inappropriately let’s say with the children!
I am so proud of our son and how he has come out the other side of this and is like a different boy again. Although we are still struggling with getting him to do basic things at least he isn’t being violent any more. As for me I have been taking anti-depressants and do not think I will ever get over what social care did to me, and my family and the thought of what could have happened. I think about all those poor kids who are having all manner of awful things happen to them (and even what happened to me) and it makes me feel sick to the stomach that I was consider even close to the same. That they wasted so much time interrogating us when actually if anything I am guilty of spoiling my kids and doing too much for them.
I want to thank everyone who supported me, especially my husband who held me up and defended me. I thought the most awful thing was going to happen and that I would have to leave all the people I love in order to keep the rest of them together as a family. I have felt so scared for so long of sharing my story for fear of losing or upsetting them – as well as people who don’t know me judging me. But I wanted to share in hope that I can help someone else.
It is that time of year again – Party Season. I know it is hard when a child is different to others to cope with their additional needs at a party – but honestly The Sensory Seeker is doing so well that I would actually say he isn’t much different to the others. I do understand that not everyone needs to be invited to every party but it is hard (probably more for me than him) when he is that child: You know the only child out of the whole class who hasn’t been invited.
It isn’t even so much about the party it’s about him knowing he’s not fitting in. That it is okay for everyone else to go so why not him as well? The ironic thing today was that he came out with a sheet about worries – the school obviously trying to get disclosures for social services with the use of a Worry Monster. Ironic because they weren’t very sympathetic to listening to these worries; simply saying there’s nothing we can do. I explained that I knew they couldn’t make him be invited to the party (although I am sure his EHC Plan probably does make provision to ensure that he socialises/fits in with his peers) and that I didn’t like how it was so apparent to him that he was the only one not invited (erm like they had all been handed out in front of him). I was reassured that they had only been given out at break time. It is real progress that he is getting so smart. Previously he never noticed this happening but still wanted a party to invite everyone to. A blessing and a curse of his development.
His birthday is coming up and we are taking him out of the country but he wants to have a sleepover a different day this year. He doesn’t really care who it is (well actually his first preference is his 14 year old cousin who doesn’t live near us!) he just wants a friend – someone who wants to spend time with him. But again the school will tell me that he does have friends, that he is a happy and likable member of the class – so how come he doesn’t feel that he is/has because he isn’t invited?
Disclaimer: He is invited to the odd party and I am very thankful to those parents. I just wish this wasn’t even a thing. Why invite all but one?!