Tourettes Tales

Masking, Do Parents Do This Too?

By August 31, 2019 Uncategorized

 

Yesterday was the day people with hidden disabilities had long awaited, applications for Blue Badges were open to those with non-physical disabilities in England. Previously it was up to individual councils whether or not they would accept these applications.

Whilst this is a positive move for those that will benefit , it also brought a lot of bitter and ignorant social media posts from those that think people with hidden disabilities shouldn’t receive this adjustment.

I am not going to debate that particular argument now as there are many posts out there already defending the people that will now rightly qualify for a badge and the reasons why.

It was whilst I was debating the reasons badges were needed for hidden disabilities it dawned on me how much is hidden not only from the public, but even close family and friends.

At first glance nobody would have any inkling that our home life was anything other than a normal family set up. I flood my private social media accounts with hundreds of photos, as a back up and diary more than anything. Happy, fun summer holidays, days out, picnics, parks, beaches everything you do with kids in summer. At school Faye is liked by her teachers is helpful and well behaved to the extent they have doubts of her diagnosis.

Faye masks as a lot of girls on the spectrum do, she is able to mimic well. At school she is able to observe and copy her peers and when she comes home she can pull off the tone and mannerisms of her teachers without knowing she is doing it. The sad thing is, fitting in at school is exhausting, confusing and upsetting for Faye. When she says she is looking forward to going back to school to do more writing but she is worried about having to “act normal” it breaks my heart. Faye doesn’t get the adjustments she needs because she exhausts herself trying to be like everyone else.  Faye has her own you tube channel talking about sensory toys, chews and other things that help her. She comes across like the millions of other children on YouTube thinking they will become famous, no hint that she is in any way different from other 8 year olds. In fact, Faye seems very much like the other girls she watches on YouTube because she is copying their style, their tone, their posture very little of what goes into the videos is the real Faye.

George tries to hide everything about Tourette’s and Autism, he struggles to supress his tics at school so when he gets home his tics are so bad he can’t even speak.

We all know the analogy of the child with ASD or ADHD acting like a coke bottle at school, every thing they have to deal with, hide or manage shaking them up little by little, until they come home and they are so shaken the top explodes off. This is true every single day for George and Faye. Before school trying to get ready and the moment they leave the classroom is full on meltdowns. But unless you are one of my unfortunate neighbours or are one of the kind people that live near the school that accuse me of child abuse due to the daily screaming you won’t see anything other than a child fitting in at school.

Looking at my social media posts there is no hint of the issues we have faced during those days out, the happy faces eating ice cream don’t show the hitting, shouting, rolling on the floor, running off, hiding, meltdowns, the child chewing my handbag strap because she has lost her Chewigem, throwing things in a restaurant and trying to run across the busy car park because they have changed the menu and they cannot simply choose something else. You don’t see the planning and preparation that goes into leaving the house. We can’t simply pop to the shop or go to the park on the spur of the moment, they simply cannot cope with the unexpected.

Social media shows what a close knit extended family we have, unless you look closely you won’t notice that I isolate myself and make excuses not to meet with other Mum friends, I don’t socialise myself at all anymore as I don’t want to have to struggle with my children in front of other parents and don’t want to put my children through meltdowns in front of their friends. It wasn’t something I chose to do but something that has happened gradually over the years. The other reason we are rarely out without other family present is because we usually need extra adults on hand, last minute days out are not often possible as we need extra family support to manage them.

There are dozens of photos of George with us over the summer, they don’t show the bribery taken to get a photo of him, they don’t show the reason there are so many photos of him with us is because he isn’t like the rest of his 13 year old peers, he cannot go out alone and doesn’t get invited anywhere even if he could. He is lonely but still doesn’t understand why he doesn’t quite fit in with his friends. Photos might not be able to hide the fact he is 2 stone heavier than me and now towers over me, they are more than a reminder of how fast he has grown up though they are a reminder I can no longer physically remove him from harm or calm him by picking him up and taking him somewhere else, which means he is more of a risk to himself and others than when he was small.

I get frustrated sometimes that the help George and Faye need isn’t forthcoming because they mask, but am I just as guilty by keeping their struggles hidden? Does it help showing the world what a typical family we are on social media, protecting the kids privacy by not talking about the ugly side of Autism and keeping everything positive?

Are positive Autism slogans enough to raise awareness? Is this masking and positive spin doctoring we do as parents part of the reason people don’t understand and why there is so much confusion about why people without physical disabilities can now apply for a blue badge?

If I do such a good job at hiding the difficulties from close friends how will the general public understand conditions they have no experience of?

Are we keeping hidden disabilities too well hidden?

Park

 

 

 

 

 

 

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Tourettes Awareness

By June 11, 2018 Co-Morbid Symptoms, General

You may or may not be aware that we have just had Tourettes Awareness Day on 7th June.  You may have missed it as despite being a member or many Tourette’s support pages etc I barely noticed any publicity.

Tourettes Action have a “Move for Tourettes” campaign running throughout the month of June where they are asking you to set yourself a challenge to move more and raise money for Tourette’s (Link here)

There was also a campaign to change your profile picture to the Tourettes awareness ribbon or to take a #TSelfie of yourself winking to support Tourettes Awareness.

1495525280_tourettes-awareness-twibbon (1)

In comparison to Autism Awareness month in April, where you couldn’t fail to notice all the campaigns going on, it all felt a little flat.

In the run up to Tourettes Awareness Day, channel 4 screened a documentary about a family with two young son’s who have Tourettes Syndrome.  Aside from it being yet another documentary that focuses on the extreme end of the scale and Coprolalia (involuntary and repetitive use of obscene language) the programme wasn’t too bad and showed the struggles people with Tourettes face.  Unfortunately, following the episode airing social media was filled with people making the usual ignorant, ill informed judgemental comments.  The message of awareness of Tourettes was completely lost amongst the tirade of abuse.

I wish the people making those comments would at least take the five minutes they spent writing and posting hurtful comments on researching instead.  It is painfully clear we are still a long, long way from Tourettes being accepted and understood.  I have even heard some advice given by Drs and Psychiatrists to that is completely inaccurate (thankfully not our own Drs).

I have never written a post with information about Tourettes as I assumed there was no need, like other conditions there is a plethora of similar posts out there.  I have changed my mind as Tourettes Awareness Day brought anything but.

Here is my list of things you should know about Tourettes Syndrome.

  1.  The diagnosis criteria is the presence of at least two motor tics and one vocal tic for at least 12 months.  These tics can not be explained by any other condition.  Tics should appear before age 18, happen multiple times a day with no longer than 3 months without tics.
  2. Vocal tics do not have to be words, they can be any sound at all.  Common vocal tics are throat clearing, sniffing and whistling.
  3. There are simple motor tics such as rapid eye blinking, small facial movements, shrugging, wrinkling nose.  There are also complex motor tics that appear more intentional and consist of a series of movements, for example touching or smelling people or objects, biting themselves, jumping or spinning.
  4. The most well known symptom of Tourettes is swearing (Coprolalia).  This is generally due to the sensationalist way the media portrays Tourettes.  In reality, less than 10% of people with Tourettes have this symptom.
  5. Tics wax and wane, over time and the tics themselves change.  There will be periods when the tics are barely noticeable for some people and other times when they are extremely prominent.  This is part of the condition.  It does not mean the person makes up tics, changes tics deliberately or is cured.
  6. Tics can be suppressed for short periods of time, this does not mean the person can control their tics indefinitely.  Suppressing tics is extremely exhausting, takes concentration away from other tasks and they can only be suppressed for a short time.  As a result there is often an explosion of tics once they stop suppressing which can be extremely distressing.
  7. Obscene or personal comments do not mean that is what the person thinks or wants to say,  in fact a tic will often come out because a person is desperately trying not to say something inappropriate.  The brain misses out the “don’t say ***” it goes straight to the word trying to be suppressed and blurts it out.
  8. Laughing with someone about their tics is NOT the same as treating the whole condition as a joke. Many people with Tourettes don’t mind if you laugh at a funny tic but take offence if you joke about Tourettes in general.  Using Tourettes as a joke not only means it is not taken seriously, it also continues to perpetuate inaccurate stereotypes that Tourettes Awareness is trying to move away from.
  9. Tourettes is a neurological condition, this means the person is born with it due to the way their brain developed.  It is not caused by bad parenting or exposing children to bad language.  Ignoring swearing tics is not encouraging your child to swear.
  10. Tourettes rarely comes alone.  Many people with Tourettes also have another condition such as OCD, ADHD or Autism, or a combination of these.
  11. However deliberate a motor tic looks it is not done through choice.  A vocal tic does not have to be random or sudden, a vocal tic can be said in context and sound intentional.  Regardless of how a tic looks or sounds they are not deliberate and are just as distressing to the person with Tourettes.
  12. If you know someone with Tourettes that is one person.  Like most neurological conditions there is a huge variation in the way and severity it manifests and no two people will experience it the same.

Iceberg-8.5x11-7.27-01

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Diagnosis Time for Faye

By December 11, 2017 Diagnosis, Faye

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

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

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

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

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

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

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

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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