Tourettes Tales

Diagnosis Time for Faye

By December 11, 2017 Diagnosis, Faye
Diagnosis

In June we had our first appointment at CAMHS,  this was more of a triage appointment with the idea of referring you on to parenting classes as they don’t refer children under 6 for diagnosis.  Fortunately we had already done the recommended courses plus others with George so we didn’t have to do them again.  We had a few sessions at CAMHS sometimes with Faye, sometimes just us.  Once Faye turned 6 in July they agreed to refer her to the neuro team for a full assessment not just looking at ADHD but ASD as well.

We quickly received a letter accepting the referral and advising us of an 18 week wait, we were therefore surprised to receive an appointment after only 14 weeks.  We were seen at the end of November for a 2 hour appointment.  We were nervous that Faye would not be herself  as she manages to contain herself and mask a lot at school, saving her meltdowns for the moment she walks out of school.

Faye was taken into one room for a play based observation and assessment and we were in another answering questions.  At the end of this we received a verbal report about the play assessment whilst the other Dr went to carry out some additional checks with Faye.  We had a short wait whilst they compared notes and decided on their diagnoses.  ADHD was very clear and given straight away, she also received a diagnosis of Autism which would fall into the Asperger’s category if that were still diagnosed.  We were a little surprised as school weren’t sure of her symptoms and she presents very differently to George.  What a smooth process this time around has been, exactly the way it should be and we felt listened to the whole way through,  if only this had been so easy with George.

Diagnosis

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Happy Tokens

By December 8, 2017 Back Story, Faye, Uncategorized
Happy Tokens Reward System

This is a late post, I meant to have finished it a while ago but better late than never.

We had been really struggling with Faye’s behaviour during the last few weeks of summer term. I was called in several times about an escalation in inappropriate behaviour.

We had several appointments with CAMHS over June and July and despite initial reluctance due to age they have referred her to the Neuro team for assessment for ADHD and possibly ASD as well.

Whilst we are waiting for the appointment and in light of the escalation in challenging behaviour we wanted to make sure we had all bases covered in managing Faye’s behaviour and encouraging her to make better choices.

Faye is extremely demand avoidant, even when what shes being asked to do is something she enjoys, which makes parenting very difficult. Asking her to put on her shoes can end in her screaming for 20 mins like she is being physically hurt.

With George we use a small A5 ringbinder to keep laminated copies of lots of social stories, reminders of rules and consequences, copies of 1-5 scale and activities to help calm down. There is a small notepad at the back also so he can write down anything that’s on his mind that he doesn’t feel comfortable speaking about face to face.  We made Faye up a similar folder and tailored the content to her. We put in the train tracks red and green choice visual used at school and some breathing and yoga exercises, along with reminders of our rules and reward system.

I had been meaning to try out Happy Tokens for a while as stickers and other similar reward systems haven’t worked for Faye in the past as she puts them in her mouth.

I mentioned our need for a resuable visual timetable to Michelle at Happy Tokens and she designed a fabulous token based visual timetable for us to try out. It was really exciting being the first to try a new product. We set it up for the morning routine and again in the evening. By making the demand via the timetable and not directly from us it takes off some of the pressure that Faye reacts to and allows her to feel in control of her routine. As Faye ticks off each item she removes the appropriate token to see what she has left to do with no nagging from me.

HappyTokens2Happy Tokens Visual Timetable

 

We also purchased a set of the original Happy tokens. They come in a personalised tube with 10 happy tokens and 10 sad tokens in your choice of colours. We chose green and red to reinforce the green choice / red choice visual we use. We also purchased 5 gold tokens although you do get one included in the set.

So far we have been very impressed it’s easy to see how Faye is doing and she can see if she is going off track by the number or red vs green tokens in the tube, we take the tokens out with us and Faye enjoys putting them in the tube when she gets home.

There is something a little more grown up about the tokens compared to sticker charts that Faye likes and we don’t have the problem of Faye trying to eat the tokens.

Happy Tokens Reward System

For more info please see www.happytokens.co.uk it is a small family run business and they are happy to answer any questions, give support in using the tokens and even design something a little different if you don’t see what you need. I will definitely be buying more tokens as so far we are seeing a slight improvement.

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The Real Costs of CAMHS Cutbacks For Our Children

By May 24, 2017 Diagnosis, Faye, General, Uncategorized
CAMHS Cuts

In my previous post I talked about embarking on a new journey to get our daughter diagnosed.  Girls with ADHD and / or Autism are under diagnosed.  Typically, girls on the spectrum are less disruptive, keep up better academically and are able to mask symptoms better than their male peers.  Despite this we were optimistic that the journey would be smoother than with George and they would be able to assess her with an open mind.

Before her first appointment at CAMHS it has been brought to my attention there are plans in our area and neighbouring boroughs to tackle the crisis in funding for child mental health issues.  Services are struggling with long waiting lists and many referrals for ASD assessments.  They have outlined a new pathway for these children, this involves removing access to an ASD assessment and diagnosis altogether.  The children will be left for schools to somehow find the funds to meet their needs, this will remove the need for a formal diagnosis according to the trust.  They also claim they would liaise with other services to provide support, whilst they may be able to do this locally many of the things families rely on are not local services so this isn’t a reasonable answer.

Yeah right, I know, I too thought it was somebody getting the wrong end of the stick and this couldn’t possibly be a seriously considered option.  Sadly, having looked into it further, this is exactly the option being undertaken.

Please see the relevant pages from the trust’s minutes of meeting detailing the planned cutbacks (CCG Minutes).

I have posted before about how important a diagnosis was for us here.   Let’s have a closer look at the services available without a diagnosis.

School placements at specialist schools or autism bases within mainstream schools require a formal autism diagnosis.

Autism services brought into schools to advise on individual interventions for pupils with autism require a formal diagnosis of autism.

EHCP – Very hard to get even with a diagnosis, the chance of getting one without the backing of professionals and detailed reports will greatly reduce the chance of getting this extra help, putting the safety of pupils requiring a 1-1 assistant at risk.

Support groups – These will accept people without a diagnosis but it will be difficult finding the right group without knowing what the diagnosis is, leading to even more parents and non professionals self diagnosing, which can be harmful in the long term.

Accommodations in the community – Many theme parks, cinemas, councils and other public places offer special accommodations for those with autism which helps greatly with managing family days out.  The criteria for these is very strict and without a detailed diagnosis report these will also be out of the question for children without a diagnosis.

Disability Living Allowance – This needs a great deal of evidence to meet the strict criteria, a school report or parents report won’t cut it, you require professional evidence.  DLA doesn’t only provide financial assistance it is one of the most common criterion in obtaining access to other services or accommodations, without DLA a lot of doors remain firmly closed.

School I.E.P – This is an individual education plan provided by school within school’s budget.  This doesn’t require a diagnosis and is based on a child’s individual needs.  This it seems is the best our children can hope for and is insufficient to fully meet all their needs.  This only provides support within school and doesn’t help them in the many other areas of their life a diagnosis would provide support for.

Another concern about not diagnosing children is their future mental health.   A child growing up knowing and feeling different and not understanding why can have a devastating effect on their overall mental health and self esteem.  Simply having the answer to why they are different and the ability to explain this to others can have an incredible effect on their self esteem and ability to cope with modern life.  Take these answers away and you are more likely to have a child presenting with future mental health problems as they grow older.  I’ve recently become aware of a lot of talk about autism being a cause of premature death and when investigating this further it would appear that some research points to a higher incidence of suicide in people with ASD, a diagnosis at a young age would make such a difference in reducing this tragic outcome.

I’ve heard the statement “just go private” a few times since these plans were announced.  I had already looked into this option for George and have again obtained quotes for Faye which were in the region of £3,000.  This isn’t something we would be in the position to pay for, not only that the reason we didn’t pursue this path with George is because a private diagnosis doesn’t get access to services or support as the NHS and schools will not accept a private diagnosis.

We have fought so hard for George and now it appears we will not even get a chance to fight for our daughter, she is being written off at the age of five with no thought for her future mental health and well being.  I would not be exaggerating to say I am terrified for her future and those of the other children who will suffer as a result of this callous plan.

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The Journey Begins All Over Again

By May 10, 2017 Back Story, Faye
Newborn Faye

Just as we have finally got George fully diagnosed and breathe a sigh of relief that fighting for assessments is over we find ourselves starting the journey all over again.  This time with our youngest child Faye.

Faye is now 5 1/2 years old and in year 1 at school.  Back in September 2015 we took Faye to the Drs concerned that the 3 cafe Au Lait marks she’d had since birth had increased in size and number.  We had also had concerns regarding Faye’s co-ordination and behaviour.  The Dr referred us to the paediatrician at the hospital.

During this time we tried to ignore our concerns about her behaviour and put it down to her copying George’s meltdowns and reckless behaviour.  We convinced ourselves we were paranoid and so didn’t push it any further.

We saw the paediatrician after a 6 month wait and he referred us to a dermatologist to look at possible Neurofibromatosis type 1.  He also observed her in full swing of not stopping moving the whole appointment to the point it was hard to examine her and she was falling off the bed.

Around the same time, in March 2015, Faye’s reception class teacher put in a referral to occupational therapy as school had also noticed her clumsiness and frequent falling over.  They also mentioned they had observed a lot of sensory seeking behaviour.  We were put on a six month waiting list to be seen.

We didn’t have to wait as long to see the dermatologist who confirmed it looked likely to be Neurofibromatosis and referred us to the genetics department for DNA testing.

We met with the geneticist in October 2016, upon examination he informed us it was more than likely Faye had a segmental / mosaic form of NF1 that would probably not show up on traditional DNA testing. He did the tests anyway but with little hope of a conclusive answer.  The only way to get a definitive answer would be to do a biopsy which would be invasive and leave scarring.  We agreed if the DNA testing was inconclusive we would not proceed with a biopsy.  4 months later the results were finally in and as predicted didn’t confirm a diagnosis.  We now have a working diagnosis of segmental NF1 which is only showing signs on her right hand side at present, we will have regular monitoring until such times as other symptoms show up that can confirm the diagnosis, likely to be when she reaches teenage years.

We had an assessment with an occupational therapist in September, unfortunately the report was never written up so after chasing for 6 months we had to start over again.  Very frustrating for us.  We saw another occupational therapist in March 2017 who did a thorough assessment, confirmed there are lots of sensory processing issues and a delayed saving reflex when she falls.  Her co-ordiantion scored fine so Dyspraxia was ruled out.  The sensory seeking and non purposeful movement seems to be the main reason for Faye’s frequent accidents, along with some slight hypermobility in her ankles.  We started a programme of sensory input at home and school, fine motor skills tasks along with exercises to develop the falling reflex.

Following a few appointments with the OT both she and the paediatrician agreed that it would be a good idea to refer to CAMHS for assessment for ADHD.  We were reluctant to go down this path having had such a terrible experience with George but agreed.  Our only concern at the moment is they are only looking at ADHD, I’d rather they kept an open mind and did a general assessment looking at everything as there are more than a few signs of demand avoidant behaviour and ASD.

We have the first appointment in June so hopefully that will give us an indication of how smoothly the next part of our journey goes.  Please wish us a smoother journey than the one we had with George.

Natural History exploring

Natural History Exploring

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Hot Topic – Fidget Toys

By May 8, 2017 General
Fidget spinners

I’m sure most of you will have heard about the country’s latest playground craze Fidget spinners / Hand spinners.  You may also be aware of the divide amongst the ADHD / Autism community about whether these toys should be used by children without special needs.

I had been aware of the fidget spinners for a while due to the numerous Facebook adverts and posts aimed at children with ADHD / ASD.  I purchased one a few weeks ago for all three of my children and they were thrilled with them.

Having tested them out they do make a little noise and they really need two hands to be effective, they also aren’t a fidget you can use discreetly due to the spinning which does draw your eyes and focus.  I could quickly see why these could be a problem in a classroom setting.

The argument that children with additional needs should be the only ones buying these has become quite heated.  I strongly disagree with this view.  A lot of fidget toys are pocket money type items aimed at all children, I think it would be very wrong to bring out a product only for a select few children, particularly when we fight so hard for our children to be treated equally.  The reason many parents feel this way is due to many schools banning the spinners and thus removing access to a helpful tool for children that need them.  Whilst I can understand this frustration, there are ways around this.  Many schools will still allow those children who have a IEP, EHCP or a recognised need to continue to use them, those not allowing exceptions for the spinners will usually allow a different fidget aid on the condition it does not distract others or draw the child’s own focus away.

We have tried many fidget toys, we find it works best to have a good selection and rotate them regularly to get full benefits.  We also find different types of fidget work best for different scenarios.

I will include a brief overview of some of the fidgets we use, although I’m sure there will be some I miss.

Lets start with the fidget spinner.  We have only tried the cheap £3.99 basic spinners so far, although I have some metal LED ones on order.  The fidget spinners are a very relaxing tool, watching the spinning action and the patterns it makes as it spins, along with the low humming sound really draws you to it.  The weight of it in your hand is ideal and if you move it slightly as you spin it the weight transfer can be felt in your wrist giving good sensory feedback.  You can use them in your hand or on a flat  surface, some children even manage to balance them on their forehead or nose.  We find the best use of these is for calm down time when you don’t need to be focusing on anything else.  If you are angry, upset or feeling anxious they really help you forget these things for a few moments as you become so absorbed in them instead.  They are also a good one to use in the car or when you have to queue for something.  So even if your school has banned them you can still get good use out of these and they are still worth investing in.  They come in a huge range of designs, simple plastic casing in various colours, glow in the dark, LED, metal, ceramic bearings, two arm, three arms or more so you can try a few to see which you prefer.

Different Types of Spinner

Fidget Cubes – Another one that is a bit of a craze at the moment, initially funded by a Kickstart campaign there are now many generic versions flooding the market.  The cube has six sides with a different fidget function on each side.  Very small and easy to fit in your pocket for discreet fidgeting.  This is a good one for use in classroom settings as it is quiet, the buttons even have two that don’t click for this purpose.  It can be used in a pocket or under the desk so won’t distract others and can be used one handed without having to look at it, so better for keeping the user focused on their lesson.  The only thing I personally didn’t like was the cheap plastic feel and the weight, I felt it would be more beneficial to have a heavier weight as it is very light and didn’t give the same satisfaction in the hand as the spinners do.  George however, loves it and always has it in his pocket.  These also come in various colours, you can get some with a built in loop to attach to your wrist or belt or you can buy rubber prisms to cover them.

fidget cubes

Tangles – These are one of the most recommended fidget toys, they consist of linked plastic loops you can move and manipulate in your hands, they are silents, small and discreet so another good option for school.  We have quite a collection of these.  We have the plain plastic ones in various colours, ones with a velvet covering (fuzzy tangle) which gives an additional sensory side to them and one with stretchy rubbery covering (hairy tangle) which is very appealing and my personal favourite.  You can also take them apart and mix and match them all.  George likes to join as many as he can to make a giant tangle.

Original Tangle Toy


Fuzzy TangleHairy Tangle
Twist and Lock blocks – These are small wooden cubes on a piece of elastic and George adores them, you can bend them into different positions and shapes and again this is silent and can be used with one hand in a pocket.

Twist and Lock Blocks

Rainbow ball – This is a fun one that also helps with problem solving skills and patience,  It is a ball with lots of coloured balls inside each with a matching colour around it,  you mix the balls up and then have to get them all back to their original positions, similar to a Rubix cube only easier. The balls make a very satisfying clinking sound when they move into position.  They are a little bit larger than some of the other fidgets, they do make a bit of a noise and need two hands and focus so these are better suited as a calming down tool rather than a classroom fidget.  Like the fidget spinners they would also be good out and about, waiting in a restaurant, in the car or in a queue.

Rainbow Ball Puzzle

 

Rubber stretchy toys – These are widely available and come in a huge range of designs.  There are animal, dinosaur, insect shapes amongst others.  Some are slightly inflated with lots of small or large rubbery tentacles that are great for stretching.  Some have lights inside them than flash when you bang them, others are very stretchy.  You can get some filled with gel or silicone beads that are really good for squeezing.  You do need to be a bit more careful with these as they do tend to burst, especially the gel filled ones.  These also have the added benefit that most of them also have a pleasant smell to them. George has a good selection of these including Mr Ploppy (See previous post) who lives in his bed for use at bedtime. rubber fidgets

 

Stretchy / Bendy men – These are usually found in the party bag section in shops you can get very small yellow men that are slightly sticky and stretchy or stiff ones that can bend about.  Due to the size of these they are very easy to use without anyone noticing, can slip inside a pencil case or palm of the hand.  George has some lizard and snake style ones he puts them all together in a Tupperware pot and puts his whole hand in to play with these.  These are also one of the cheapest ones on the market, often as little as 10p.

stretchy man                                       bendy man

Blue Tac – Readily available and easy to keep a little blob on the desk to fiddle with, make shapes with.  A good choice for older children that aren’t so much into the toy style fidgets or don’t want to draw attention to their fidgeting.  Blue Tac

 

Squeeze balls – You can get basic foam balls or balls with gel or sometimes cornflour inside.  Our favourite are the ones with the netting on the outside, when you squeeze them you get little bubbles coming through the netting.  The flour filled ones are our least favourite, they are usually made from latex balloons and they break very easily leaving a lot of mess. Mesh Ball

 

Water snakes – These again are fragile and need two hands so better for at home.  They are however amazing to play with and difficult to put down. They often have characters or underwater animals inside the water as well as glitter.

Water Snakes

There are a few more fidgets I’m hoping to add to our collection, the bike chain fidgets look a good option as does the table top flipper. I’m always on the look out for more items to add to our collection. Of course a fidget toy doesn’t have to be something designed for that purpose, the possibilities are endless.  If there are any good ones I’ve missed please let me know.

 

 

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Another Piece of the Puzzle

By February 3, 2017 Diagnosis
Royalty-free concept clipart picture of four red, blue, green and yellow puzzle pieces connected together.

When we received George’s ADHD diagnosis back in August we were refered by our local CAMHS to a more specialist hospital for another ASD assessment. George was initially assessed for ASD via a DISCO interview back in 2010 when he was 3 1/2. At that time they felt he didn’t meet the criteria for any diagnosis at all. As George is now 10 and still has substantial difficulties not covered by his Tourette’s and ADHD diagnoses we requested he have a repeat autism screening.

We had been waiting and chasing up this appointment, all the while worrying about time ticking on with George only have a term and a half left of primary school.

Finally, we received a phone call last week offering us an appointment. A team from the hospital had just transferred to our local CAMHS clinic so we were able to go there instead of the hospital.

We had our appointment yesterday and were understandably very worried. Usually George can manipulate these situations just enough to cover his difficulties. Years of social stories, emotional literacy sessions and psychotherapy have taught him enough to know what people expect him to say and how to respond, even though he can’t apply this knowledge to real life situations.

George was reasonably calm, he is very familiar with the building and rooms and he loved playing with all the fidget toys in the waiting room.

George was taken into one room for his observation and my husband and I went into another room.  We spent around 2 hours answering questions and filling in details of George’s early development.  We had also printed out notes of all the things we were concerned about in case we didn’t have time to cover them all or missed anything out.

At the end of the appointment the two Drs went away to compare notes and were able to tell us at the end that they will, pending an official report and re-checking of their notes, be giving George a diagnosis of ASD.  The Dr who had observed George had picked up on a lot of things George usually manages to disguise and George was really open and honest with him which was a huge relief.

After the appointment we felt rather odd and surreal, we had been pushing this diagnosis for the best part of 9 years now, we felt relief but also a sense of sadness and regret.  We weren’t upset about the diagnosis but at the fact George’s childhood is nearly over, we have wasted his childhood not understanding him, watching him being treated unfairly by others and ourselves at times because he was never fully understood.  When I look around at others that received much earlier diagnosis’s they have had much more support and had more guidance than George did.  George has grown up with such a poor self image because of nobody understanding him and it is unfair.

I almost felt like I was meeting George for the first time, finally being able to see the person I had suspected was there all along but had been prevented from getting to know.

 

Royalty-free concept clipart picture of four red, blue, green and yellow puzzle pieces connected together.

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Secondary School Looms Ever Closer

By October 18, 2016 General
Good news at last, new EHCP
Good news at last, new EHCP

Good news at last, new EHCP

It doesn’t seem five minutes since I wrote a post about visiting secondary schools for the first time last September.  George was in year 5 then and it seemed so far away.  The year has flown by and in September we were asked to officially name the secondary school we wished to be named in George’s E.H.C.P.  So off we went to a few more open evenings to narrow down our choice.  We met with the SENCO of our first choice and were reassured this would be ideal for George.  The location means although it is out of borough it is dead centre of George’s family support network.

During George’s journey we have been used to being knocked back, not being given answers and sitting on waiting lists.  We were amazed at how smoothly the process for applying was.  We emailed the borough to name the school we wanted to be named in the EHCP, within a week we had a response with an unofficial yes, quickly followed a week later with an official offer.  George’s revised E.H.C.P arrived in the post today.  I can’t describe the relief of getting the answer so quickly, even before the rest of his school year have put in their applications.  Finding out this early will make a huge difference to George and help with preparing him for the big transfer to high school.  He had been very anxious about where he would be going, so he is a lot more relaxed now he has a definite answer. George passes his new school every day so is able to talk about it, become familiar with the are and he is starting to look forward to going there in September.

I think the transition will be hard for him, he will be in for a big shock to the system but at least he is in the place we feel best suited to help him through this process.

The only disappointing part of the process is the school George will be attending has an amazing Autism base, as George is on an 18 week waiting list for an Autism assessment he has missed out on a place in the unit.  Even if he does receive a diagnosis it will too late to apply for one of the 5 places available this year.  We are putting that to one side for now, we are just grateful he has a place at all.  I know how difficult it is for some parents to get a place even with an E.H.C.P and they have to spend months appealing and fighting, we were so surprised this wasn’t another battle we had to add to all the others we have fought on George’s behalf.

 

 

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Another Diagnosis, Another Label

By August 19, 2016 Co-Morbid Symptoms, Diagnosis
adhd

The blog has been very quiet these past few months, partly as we were busy buying a house and undertaking renovating projects. Another reason is I was awaiting a firm update from CAMHS. Back in January George had a routine medication review at CAMHS, during this meeting we mentioned concerns about George’s behaviour and sleep which seemed to have gotten worse. We did wonder if having had a recent growth spurt he needed to increase his medication dose. We agreed an increased dose to try and the Dr asked us if we had ever considered ADHD, how we laugh. It was agreed we would go away and get copies made of the numerous reports we’d accumulated over the years for the Dr to review, if she felt it would be wise to do another ADHD assessment the relevant forms would be sent to us and the school. A few months went by and due to a mix up with the paperwork being lost in the post nothing much happened.

Meanwhile, we also had George’s annual EHCP review, during which we discussed George’s ADHD review, it was also mentioned that there were still other issues that that aren’t really covered by the Tourettes or ADHD labels.

During the summer term there was a big change in George’s unusual behaviour, he wasn’t dealing very well with the absence of his teaching assistant whilst she was on sick leave and wasn’t coping at all with friendship difficulties. His behaviour became frightening. We spoke to the school SENCO and arranged an emergency meeting with his CAMHS Dr. By now all the ADHD paperwork had been reviewed and an observation was arranged so George could be observed in a school environment. We had written a very long list of our concerns and it was agreed this would be looked at too.

We had a month long wait between the school observation and the meeting to tell us the outcome. We were concerned as George had come out of school on the day of the observation and asked angrily why we had sent someone to spy on him and he had to be on his best behaviour as somebody was following him around making notes. The observation was supposed to be without George realising he was being watched. Despite this, when we had the meeting at CAMHS it was revealed he does have ADHD. They had also looked at our other concerns and he is currently on a long waiting list for a specialist appointment for an Autism assessment. Sadly, I don’t think this will happen in time for his high school applications which could affect where he can get a place. CAMHS also think it is highly likely the outcome will be Autistic traits but not in the right combination for a diagnosis, we can only wait and hope the years of social training and emotional therapy etc don’t scupper the results, George is good at doing what he thinks he should be doing/saying in a clinical situation even though he can’t transfer these skills to real life scenarios.

We have been told in the meantime to carry on treating him as though he does have ASD as well as ADHD and see if these adjustments improve his behaviour.

adhd

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Should We Be Labelling Children With SEN?

By January 28, 2016 Co-Morbid Symptoms, General
SEN labels

“Labelling” your child is a controversial subject with a lot of people feeling strongly about it.  We recently attended a talk on ADHD and the subject came up of why people feel the need to have a label.

We have always wanted a “label” for George, let me explain why we felt this was important.

Before George had a Tourette’s diagnosis he had no medical diagnosis to explain his difficulties and why he does the things he does. As a toddler out and about at toddler groups he would be very hard work, not conforming to standards of behaviour expected of him. We knew there was something not quite right but with no medical professional recognising this we were left to try and explain his behaviour to others. This is very hard without a name, people then tended to give him their own labels such as “naughty”, “out of control”, “wild”, “undisciplined”, “spoilt”, “rough”, “aggressive”, “spiteful”, “strange”. As a parent these things are hard to hear, to a young child growing up hearing these things must have been soul destroying. George learnt early on, he didn’t get invited to birthday parties or play dates, people declined invitations to his parties. This is simply because people don’t make allowances for the above labels, he was the child you told your child not to play with in case his behaviour rubbed off on them.

As a parent my confidence was destroyed by years of being told by medical professionals there wasn’t anything wrong with him, we just needed to work on our parenting techniques.

There aren’t many books or support groups for children with difficulties with no diagnosis, so we were alone and feeling very judged.

When we finally had a diagnosis after years of the above it was a huge relief. We could access support networks, read books about Tourette’s, explain to people about George, everything was so different.  I often wonder what George’s early years would have been like had he been diagnosed at the start?

People’s attitude changes when you have a diagnosis, instead of telling their children to avoid your “naughty” child, they explain to them George has Tourette’s and sometimes finds things difficult.

For us George being labelled as having Tourette’s meant:
Acceptance
Understanding
Support
Targeted support at school
Reduced the unhelpful negative labels people gave him.

Labels don’t have to be a negative thing, they don’t define a child.  In our case it allows George to be himself without judgement.

At the moment George has a lot of other difficulties that aren’t covered by the Tourette’s label. This has proved to be a problem when converting his statement to an Education, Health and Care plan (EHCP). We are now in the process of having his other needs re-assessed and if necessary he will have additional labels. We hope if this is the case it will free him and allow more doors to open.

 

SEN labels

Should I Label My Child?

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The Hardest Part, Dealing with Co-Morbid Symptoms of Tourette’s

By January 15, 2016 Co-Morbid Symptoms
Sweet tin

Wow, this morning really drummed everything home once again.  It is so hard finding out your child has Tourette’s, at the time the tics and the uncertain future were a huge worry.  Actually, now the tics are just part of George and really are the very least of our problems.  The thing I find the very hardest to deal with is the rages that accompany George’s Tourette’s.

From a baby George has always come across as very angry, one of the first sentences George put together was “I throw”, this became his catchphrase as a toddler, when things didn’t go his way he would throw things.  During these rages George seems to gain superhuman strength, he is totally out of control and unreachable during these times, it is so scary watching your child transform in this way.  It has always been hard to deal with but as George has grown and his strength has grown along with him the rages have become more extreme.

The rages come without warning and are long lasting.  This morning started out well, George got up and got dressed.  Today is Friday, the day they have sweets after school.  Henry was in the kitchen sorting out the sweets ready for this afternoon,. There was only one of the sweet pots in the cupboard, so Henry, thinking he was being kind said George could use this and he and Faye would use the sandwich bags.  Without warning George took the pot and smashed it into pieces, took the tin of sweets and threw them over the kitchen.  I tried to remain calm and told George that he would not now be able to have sweets after school because of his actions.  This resulted in George rampaging through the house, emptying a bag of cat litter onto the hallway floor, emptying his water bottle, throwing the contents of his wardrobe onto the bedroom floor and making it clear this was my fault, how dare I punish him.

By some miracle we managed to get to school, I spoke to his Teaching assistant and SENCO so they could take him out for a time to talk to them and calm down. I hate leaving him at school in that state and I’m so pleased he has such an understanding school that will make sure he feels secure.

It’s hard living feeling like we are walking on eggshells, never knowing what will trigger one of these rages.  George sees the world through such different eyes to us, I just wish sometimes we could share that view so we can understand where George is coming from.

 

 

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