Here’s your child’s diagnosis… now off you go!

I wasn’t going to write anymore posts before Christmas, I still have so much to do, writing cards, buying the last few gifts, wrapping a mountain of presents!

But I just wanted to write this post as I get what I’m wanting to say flowing through my head all the time and it won’t go away until I’ve got it all written down!

At my local parents support group (that I help to run,) we had a meet-up on Thursday 7th December and the subject of ‘after diagnosis’ came up again. This is so relevant for us as a family currently, as our eldest daughter, Lou (5) was diagnosed with Autism Spectrum Disorder (ASD) only 4 weeks ago. We had a wonderful guest speaker from Autism West Midlands attend the group and we got into the discussion of what happens after our children are diagnosed, that there is non-existent after care for parents, whose child has just been diagnosed with something that they will carry for life, it doesn’t just disappear. We all mentioned that it is usually the procedure that the diagnosis is sent via paper, the child will then be discharged from the Autism diagnostic team and maybe even their paediatrician and then sent on their merry way. Lou hasn’t been discharged from seeing her Paediatrician, (who is one of the only professionals that has seen Lou’s full traits,) because she will be assessed for ADHD around February/March time, as children are usually assessed after their 6th birthday.

I knew I’d read something to this affect before my child was diagnosed and it was a fantastic post written by a fellow SEND blogger: Faithmummy:

https://faithmummy.wordpress.com/2017/01/22/when-your-child-is-diagnosed-with-autism-and-then-dumped/

I can 100% agree with what Miriam (Faithmummy) is saying in this post, especially as Lou was first given an IEP (Individual Education Plan) at the age of 3, then given a support package including interventions to support:

  • Gross motor skills (caller ‘Smart Moves,’) as she was diagnosed with Hypermobility at the age of 4.
  • ‘Relax Kids’ to support with self-calming and regulation methods which can also be carried on at home.
  • ‘Sensory Breaks’ given throughout the day in a specified sensory area with sensory toys and equipment to allow Lou to offload her sensory seeking needs. To avoid build ups and to prevent such a large ‘sensory overload’ when reaching home.
  • Emotions cards- recognising and naming emotions to help Lou to identify how she is feeling.

This support package was working for Lou, even without an official ASD diagnosis. What’s happened since she’s been diagnosed is that this support is now non-existent. It is more noticeable that as soon as Lou reaches me at the end of the day, as her ‘safe person,’ she immediately ‘offloads’ to me, often right next to a busy road, we’ve often missed the local bus to take us home and then it’s taken us over an hour to get home, what would normally be a 20 minute walk as Lou is so frustrated and overloaded from a day of ‘holding it all in.’

I’ve currently done 3 different parenting courses in the past 3 years, all suggesting different methods, but sadly none working for Lou, as she displays a high amount of PDA (Pathological Demand Avoidance,) although her diagnostic report states that she’s too young for this to be officially recognised as part of her ASD.

I still get comments regarding my parenting skills, even now Lou has an official diagnosis, I’m so exhausted with the fight to ensure that Lou gets the support she so desperately needs and deserves. My feelings on this are that it’s very much money dependent on SEND budget, and because Lou doesn’t cause trouble in class, she’s seen as ‘fine’ and just gets on with it. She would need to cause disruption in school and experience a meltdown/sensory overload in school to then get people to stop and recognise her struggles, but I don’t see why I should let it get to this point. The interventions she has been receiving are the sort that would benefit any class of children the same age. She needs support in terms of her comprehension and understanding, as in my own experience in school, I would nod and make it appear I was listening and understanding, but underneath I hadn’t got a clue what was being asked of me.

But what happens if girls ‘mask’ in school?

If girls on the autistic spectrum hide their ASD traits in school, it can cause long term effects in terms of their mental health, we have no positive experience with services such as CAMHS (Child and Adolescent Mental Health Service,) as Lou was referred to this service then they didn’t even observe her, and discharged her that same day! We were yet again given a whole load of ‘parenting strategies’ and sent on our way as we were receiving Family Support, which ironically, we no longer qualify for, yet our daughter’s needs are now much higher!

To me this simply doesn’t make sense! If you give yourself a ‘mask’ in school, this requires such a lot of mental effort and it leaves you mentally drained afterwards. I didn’t even realise I was masking my traits until I researched into my own difficulties, I didn’t even realise it was a ‘thing.’ So I had no awareness of why I was finding school so mentally exhausting.

You only have to look back into my medical records to see what has happened as a result of my masking in school and then into adulthood, several episodes of depression, one very bad (Psychotic Episode,) and regular reoccurrences of anxiety. I hardly spoke all throughout my whole school experience, I didn’t tell anyone I was struggling, I put my head down, made it appear like I understood and just got on with it, desperate to make myself seem ‘invisible’ and not drawn attention to.

This is what occurs when difficulties such as ASD aren’t picked up on and even if they are identified, when support is still not given. I find it so confusing as to why there are clear strengths and areas for improvement, and also recommendations on Lou’s diagnostic report, however none of these are being addressed. When we fought so hard for Lou’s diagnosis to be recognised and addressed via appropriate support. I was further knocked into the ground every time my parenting skills were mentioned.

There’s a question that’s hanging over me currently: “to EHCP or not to EHCP?!” Lots of fellow SEND parents have advised me to start the process myself. Lou I think is doing ok academically, her reading was taken back down to the first level, where she was at in her Reception class, when she had been moved up, there’s still a question over her reversing letters like ‘b’ and ‘d’ and words like ‘on’ and ‘no.’ She also didn’t meet her early years goal for writing at the end of Reception year, as she struggled to actually get her writing down on paper. It’s not only the academic side where Lou requires support, it is especially socially and emotionally where she struggles, and currently struggling with her self-confidence, which is worrying at not quite 6 years old. I have read that with an EHCP, it supports the child/young person until they are 25. Which I think would benefit a child like Lou, who may very well struggle more and more as the pressure of school mounts, e.g SATs and GCSEs.

For now, it’s December 12th 2017, I’m physically and mentally exhausted, I currently have no fight left in me. I need to enjoy the festive season with my family, then re- group and continue the fight for support for my girl, ‘Warrior Mum’ will have to return in January 2018!

Thanks for reading 🙂

Here are some more fantastic posts regarding ‘diagnosis’ from fellow bloggers:

http://itsatinkthing.com/special-needs/autism-diagnosis-harder/

https://someonesmum.co.uk/2017/06/16/i-will-not-let-broken-system-break-little-boy/

”Spectrum

That ‘light-bulb’ moment…

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I first heard the word ‘Autism’ whilst I was studying for my 3-year teaching degree. Autism was referred to during my lectures on SEN and the SEN Code of Practice 2001 (as it was then known as back in 2001.)

I then completed a few courses run by the county council such as ‘Autism in the Early Years.’ I worked in a school in Norwich where there were a few pupils with ASD, just referred to as ‘Autism’ back in 2004. I must admit my initial thoughts about Autism were limited to people who find eye-contact difficult and those that seem to be ‘in their own world.’ How wrong I was, I had no idea that the ‘Spectrum’ was so wide and varied, util i started researching Sensory Processing Disorder (SPD) and Autistic Spectrum Disorders (ASD) in terms of gaining information about my own child and starting my blog in March 2016.

Some questions were raised myself, after watching a documentary on ‘Girls with Autism’ http://www.itv.com/presscentre/press-releases/girls-autism a documentary shown on ITV in July 2015, based at Limpsfield Grange in Surrey. Which is the only state run boarding school in Britain specialising in girls with Autism. During this documentary it was highlighted that in some teenage girls, diagnoses such as Anorexia, Depression and particularly Bi Polar, have been given and not Autism. This hit home for me, remembering the time that my mum took me to my GP and said “please help, my daughter won’t eat,” after I only ate minimal food such as cucumber and gagged on the majority of my food, at the age of 14. I have often been told that I am anxious and/or depressed, In 2009 a doctor in Norwich labelled me as ‘Bi Polar,’ but I’ve always had serious doubts that this is the case.

It wasn’t until I attended a talk led by ‘Autism West Midlands’ in September 2016, that I had a ‘light-bulb’ moment. As we discussed various traits and issues experienced by other parents I sat there thinking, that sounds just like me! When discussing that some children simply cannot tell when they are full and have no idea when they are full, I thought “that’s me.” This also applied when talking about masking at school and building up sensory overloads all day at school, and then finally releasing like a volcano erupting once reaching home. I was a huge conformist as a child and a teenager, I can remember only ever having 2 detentions in my whole school life! I am, and was scared of authority, I used to get upset if other children were shouted at in class.

After the Autism talk I decided to look into the pro’s and con’s of going to ask my GP about the possibility of an adult assessment for ASD, in particular Asperger’s Syndrome, but I’m currently unsure if this can still be referred to?

I realised that I had taught myself how to deal with a lot of my traits as I’d grown into adulthood and that I am functioning fairly ‘OK’ these days, so I wasn’t looking for any sort of support in terms of strategies, although I’m always open to suggestions! Some of the things I have taught myself over time are:

  • Understanding jokes and sense of humour – although I still don’t always get some jokes!
  • How to gain and keep eye contact – this didn’t happen until I was around 18 and got my first job in customer service.
  • How to understand non-verbal cues in conversations, e.g. winks, yawns (if someone is bored!) etc.
  • How to hold a conversation that isn’t entirely one-sided! Sometimes I literally have verbal diarrhea – If I’m talking about something that I enjoy, or that I’m passionate about I forget to allow the person I’m talking to to respond or have their own say, so I’m now more aware of how conversations should go!
  • To know that not everyone has to be ‘my friend.’ I spent a great number of years trying to please everyone, I have been known to change my point of view to one that I know that the other person would agree with, if only to diffuse a situation and to avoid a disagreement or argument as I really am uncomfortable with any sort of confrontation. As a result I have often been ‘walked all over’ and have been a easy target to manipulate. It is only in the past year that I have said to myself ‘enough is enough’ and have stood up several times for what I truly believe in. I think becoming a mother has played a huge part in this!
  • Relationships ! This has always been a sore subject! Well until now! I’ve always struggled to find people that actually ‘get me.’ I was often called weird and it was difficult for past partners to live with my ‘quirks!’ I think this explains why I have struggled to commit long term in the past and also struggled to trust. Once I found someone who understands me it was very different, very difficult to live with at times, but I am not as impulsive as I was in my 20’s!
  • Saying things I don’t mean and speaking without thinking first, I don’t have a filter for the majority of time! If a though pops into my head it literally comes straight out! This results in me often wallowing for hours after a conversation wondering about why I said what I did and if the other person in the conversation was offended by what I said! Saying the wrong thing and people looking at me when I talk are the reasons that I didn’t talk very much as a child at school, I was labelled throughout my school life as ‘painfully shy.’ In fact, I knew most of the answers to questions in class I was just desperate not to be noticed or attention drawn to me, I like to fade into the background and would have loved an ‘Invisibility Cloak!’

Knowing that I am functioning in terms of running a household and caring for 2 young children, I had to think about the possible advantages of an adult ASD assessment:

  • I would hopefully be given answers to questions that I’ve had about myself my whole life, to confirm or dismiss any previous diagnoses.
  • Not a great deal would change, I would still have my home, my 2 children and partner of 6 years. I have also been able to hold down a job since I was 16 and I’ve worked in Childcare and Education for 13 years with only having around 6 week’s off work sick. I would also hope that my friends would understand me and that I haven’t changed, friends are precious to me as I find it so difficult to make and keep them!
  • I would hope that it may support future job roles, as I do hope to eventually work with children with additional needs, especially those with ASD, and Sensory Processing Difficulties as I can put myself in their place, I kind of know how they may be feeling, and If they are getting upset about something, it can be something as simple as a label in their clothes that has been making them feel uncomfortable all day.

I also had my doubts:

  • Would people treat me any differently? Think of me as only trying to gain money from a diagnosis, when it’s the same for my daughter, we don’t qualify and it is not the reason behind it – the reason is helping to accept myself and move on.
  • Would it affect my career? I’m worried that some may think that a diagnosis would effect my ability to do my job, but as stated above I have been doing it for 13 years, my paperwork is meticulous and I could never do any other job as it’s all I’ve ever known!

As I have dispelled my own doubts, I went to my GP after scoring myself with an online Asperger’s test where I scored 48 out of 50. I sent this test prior to my GP appointment and from there I was referred straight on for an adult ASD assessment. This was in October 2016 and I’m fully aware that this is going to be a long process and I’m prepared for the wait. I have spent many appointments with my daughter where I have explained in great detail how she feels, and have been often questioned:

“How do you know how she feels?” 

My reply has always been:

“Because I feel the same.” 

This is especially prominent in terms of sensory sensitivities such as itchy jumpers and labels in clothes!

What I hope to say in future appointment is:

“Because I am an adult who has ASD.” 

I have taken a while to write this post, I felt ashamed at first, I wrote a poem and had it shared anonymously, very kindly by Kelly at ‘Its a Tink Thing.‘ Here is the poem I wrote;

http://itsatinkthing.com/special-needs/a-cry-for-help/

Only this Monday I read the following article, published by the Guardian:

www.theguardian.com/autism-hidden-pool-of-undiagnosed-mothers

The following quote hit home for me:

“Their own autism, often undiagnosed, means they put professionals’ backs up and can be accused of causing or fabricating their children’s condition,” said Gould.

Source: theguardian.com 26/12/16.

I’m literally had no idea about my traits until I started looking into Sensory Processing Disorder, and I was invited to the talk on Autism by our previous Family Support Worker, this article states that there are other people who have the same experiences. I am currently in limbo as to whether I continue the fight for Lou or give up as I often left to feel like I am ‘making it all up,’ ‘fabricating’ or ‘exaggerating.’ My parenting has been blamed many a time for the behaviours that our daughter displays at home, I’m often left to ask people around me if they believe me, my poor mother has been asked this so may times, but as I have dedicated 12 months to building my Blog, Facebook and Twitter to my daughter’s story how could I simply be making this up?

For now, I’m taking each day at a time and seeing where it takes us.

One thing is for sure, I’ve learnt that I am who I am and I cannot change who i am and that I should be accepting of myself and proud of what I have and what I have achieved in my 34 years on this planet! 

I would be completely lost without online support groups, there are support groups for people who are experiencing the same and it helps so much to talk to people that completely ‘get’ what I am saying. I have to also thank Autism West Midlands and The National Autistic Society for their wonderful websites, which have given me so much support and information.

 

If anyone is interested below is a link to my notes that I hope to take to my initial ASD assessment appointment. I welcome any feedback in terms of other adults who already have an ASD diagnosis to see what they think about my traits.

notes-for-assessment-for-blog

 

Thanks for reading, and hopefully understanding! 🙂

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Hooked on Labels - responses & other relevant posts linky

Visuals, Visuals everywhere…

Our house is currently covered with visual aids. I’ve used visual prompts in my job role as a teaching assistant, Nursery SENCO (title name in 2009,) and Early Years Teacher. I find the pictures of actual objects work very well with all Early Years children. And I also used the actual objects to show to babies as a prompt, e.g a nappy when it was time to change their nappy.

At first I wondered if visuals would work for Lou, but I discovered that she was responding really well to a ‘Visual Timetable’ and ‘Sign-a-Long'(signing system) at her Early Years setting. Even though Lou is verbal, she may not always understand what is being asked of her or what she is saying herself. Using visuals has aided that ‘Processing Time’ that is so vital for Lou – offering her at least 10 seconds after a question or request. Using a visual is a practical way of getting across a message to her without her having to think really hard about what is being said. 

Here is what ‘Autism West Midlands’ state about visual resources:

Why do visual resources help people with autism?

• Many people with autism are ‘visual thinkers’ so information can be easier to process and understand if it is presented visually. 

Visuals are more permanent than words. Once something has been said it can quickly be forgotten or misinterpreted, whereas a visual will always stay the same and can be referred to as many times as needed.

• People with autism can find verbal communication difficult to understand because there are so many different bits of information to process all at once. Visuals allow a person to focus just on what is being communicated, rather than having to decipher the tone of voice, eye contact and body language etc. 

• Visuals can help people with autism to express their needs – if someone struggles to communicate verbally, visuals can be used to help them tell others what they want and need.

• Visuals can help to increase independence – for example if a person struggles to get themselves dressed in the mornings, try using a visual prompt to help them understand what they need to do.

How can visual resources support those with challenging behaviour?

• People with autism crave predictability and structure. When there is not enough structure people with autism become anxious. Visuals help to provide this structure and predictability, which reduces anxiety.

• Challenging behaviour can occur when a person with autism cannot express their needs or doesn’t understand what is being communicated to them – visuals can help with this.

• Visuals can be used to help people with autism understand how they are meant to behave and what is expected of them.

• Visuals that incorporate a special interest can help to motivate and reinforce the expected behaviour.

Taken from ‘Using Visual Resources – Introduction. www.autismwestmidlands.org.uk

Illustrated small cards. 

These smaller visual cards are very good for aiding processing time, for example, the card that displays putting Pyjamas on is frequently used, also the one for ‘Good Listening.’ When we would like to gain Lou’s attention. 

Now’ and ‘Then’ boards.

Many times Lou can get overloaded with information, she often wonders what the day will bring and asks every morning (around 6am!) Where are we going today? 

This is when the ‘Now’ and ‘Then’ visual prompts are very useful. Where photographs of the actual activities, actions or places are taken: 

For the above this displays that ‘Now’ it is craft time and ‘Then’ it is lunch time. This clearly displays the activity or action that is happening now and after to allow Lou to process what is happening, and also reduces the anxieties of not knowing what is happening. 

Specific routine visuals.

These cards for ‘Crossing the road,’ ‘what I need for swimming,’ and ‘getting dressed,’ were taken from the ‘Autism West Midlands Website.’ (Link below.)
These routine visuals for ‘Getting ready for school,’ ‘after school,’ and ‘getting ready for bed,’ were found on a website called ‘Understood,’ (Link below.)

The above are examples of pre-made specific action or activity timetables that I have printed then laminated. 

Traffic Light Visuals.

After recent input from an OT it was suggested that a traffic light system could be used in order to help Lou to understand how she is feeling and to help with sensory overloads.

I designed the above visuals and used actual pictures for:

Green = general activities of choice. 

Orange or ‘Amber!’ = activities to help calm/burn energy ~ dancing to music or play dough. 

Red = time out in the ‘Calm Zone,’ which is the sensory area situated under our stairs, or to lie on her bed and calm using a weighted blanket.

The aim is for Lou to eventually recognise when she’s feeling a bit overloaded and select an option independently.

Reward systems.

We have tried sticker charts, charts where a hand moves up every time kind hands were used, a ‘Family Starry sky’ where star stickers are added everytime someone in the family achieves something. But nothing has worked as well as the ‘Special Interest’ chart below:

‘Frozen’ achievement chart with characters to earn, can also be snowflakes to earn.

Lou has been a huge ‘Frozen’ fan now for about a year, this chart didn’t take too long to make via a ‘Word’ document, the blue circles are easily copied and pasted and I got some Velcro to enable Lou to add the characters one at a time onto the chart as and when she achieves something. When all 5 discs are achieved Lou receives a reward, which I have been advised, doesn’t always need to be a reward that costs, this can be a trip to the park, or ‘Mummy time’ where Lou and I do a particular activity of her choice without her younger sister present. I have found that Lou is particularly motivated by her current ‘Special Interest’ of ‘Shopkins’ and therefore she enjoys earning the smaller sets or magazines which are not too costly. As a family, we are finding that this chart has helped to encourage Lou to use kind hands and has been hitting out less often, it’s also been beneficial in terms of Lou’s current issue of spitting, this has been occurring less frequently since the introduction of the chart. As the interests change, so can the chart to keep the child’s interests, after Christmas i’ll be changing it to a ‘Shopkins’ chart. 

A chart I made for a friend’s son who is a big fan of ‘The Avengers.’

I have found the following sources are amazing for examples of visuals:

  • Autism West Midlands – 

Help and advice, visual resources

There are some really helpful guides to using visual resources and they offer some printable resources. 

  • Do2Learn – 

Printable Picture cards

Here there are also fantastic ‘Social Stories’ that we have used with Lou, these are visual stories where steps of an event or practice are shown in order. We used a Social Story when Lou had to go to the local hospital for her Microarray blood test and we were amazed how well she coped with the experience. Social stories can be used for a visit to the doctors,  dentists,  hospital,  park, play dates, parties, etc. There is more-or-less a Social Story for any event. 

We used this ‘Social Story’ when Lou had her blood tests.
  • Understood – here we were able to print off the routine visuals for bedtimes, getting  ready for school, etc. 

Visual planners

For more information on ‘Sign-a-Long’ please visit:

www.signalong.org.uk

Thank you for reading 🙂 

If anyone has any queries on visuals please contact me at: 

sensorysensitivemummy@outlook.com