This post is a risky one. I think I'm at risk of offending many parents. But I feel this is an important message that needs sharing. It's my message and my opinion. The term Autism Warrior, or Autism Warrior mum...Autism Mama Bear..all these terms that we have given ourselves over the years. I understand why. We have to fight. We have to fight from every possible angle for our children. We fight against schools; schools who dismiss our concerns, schools who dismiss our interventions and strategies and schools that dismiss our children. We fight against professionals, professionals who let us down, professionals that cannot be found for months on end and professionals that promise support that doesn't come into fruitition. We fight against judgement. Judgement from strangers, from friends and even family. So I get the reason for the term warrior. And I think we should be proud of what we achieve on a daily basis. These are things that parents of NT children would never dream of having to fight and the fact that we have the ability to do this day after day is something to be proud of. Our resilience as SEN parents is amazing and should be recognised.
However - the term warrior. It also gives this perception of someone who is strong. Capable. Up for the fight. Someone who doesn't break nor falter, who believes in themselves at every turn.
And that, in my opinion, is where this term is wrong for SEN parents. It gives the wrong message. That we HAVE to be strong. We HAVE to know the answers. We have to believe in ourselves. It doesn't allow us to be vulnerable, to be helped, to be supported. It gives the impression that we shouldn't be low or struggle or not believe in ourselves.
I work, day in , day out with parents and I have spread this message before. Parents who are so focused on their children that their own physical, emotional and mental health is being pushed to the background , most of the time without parents even realising. I have spoke about the importance of time for yourself, time to be YOU and the fact that if you are not well, your child won't be.
But, what I haven't mentioned, is its OK to NOT be OK. This fight is hard. Its exhausting. And most of the time, you don't know how to help. You can't help. You don't have the skills, the knowledge and you don't know where to turn. Your managing this on little sleep, and no thanks or appreciation.
I recently conducted research on co morbid mental health and ASD / ADHD and guess what mental health condition came out of that research? Or rather whose mental health came out top? You guessed it - YOURS. The parent. Parent's of SEN children in Hertfordshire are suffering. Their mental health is suffering. There is grief, trauma, PTSD, depression and anxiety. Because this shit is HARD. And that - that is the truth about SEN parenting. I appreciate that this may not be the experience of every SEN parent in Hertfordshire but from my research this is the message. And yes, you are warriors for your children. You get up day after day and you fight for what your child deserves. But internally, the fight is detrimental. And that's OK. You don't have to be strong all the time. You have the right to be vulnerable, to be lost and to be traumatised. And so do I.
I don't have it all together. Which, in my work, is quite difficult to admit to my clients and prospective clients. I don't have all the answers for Noah. Just once I would like to go to an appointment and not hear bad news. I survive on little sleep and far too much sugar, and sometimes, very little fight left to battle the next meltdown or sleep terror.
So I don't like the term autism warrior - because I don't want SEN parent's to think they have to be strong. I want the message to be different. I want the SEN world to know that its OK to not be OK. And that's my message for the SEN community. Be strong for your kids, you know whats best for them and you fight for that all day long. Be proud of your resilience and your achievements. But don't feel like a failure , or a bad parent for finding this all too much some days. Don't feel like you have to always be strong. Don't beat yourself up for not having your shit together. Because that's the reality of SEN parenting. And its about time that that message is screamed from the roof tops.
It is has been a tough couple of months for me. The end of April was a particularly tough time for my family and I, and things since have continued to almost feel like an uphill battle for one reason or another. For the first time since I started The Butterfly Room 4 years ago, I took almost three weeks off work. And not because one of my children was poorly, or annual leave for a holiday, or for childcare reasons. I took three weeks off for me.
I spent a lot of time with family, helping each other through the difficult time. I spent time with close friends, and lots of time with my children. I took them to school, and I picked them up – a novelty for me as with my working hours, on three days out of the five I drop my children to school and then do not see them until the next day. My family and I spent time together, developing new memories and healing wounds. At the end of the three weeks, I felt myself again. I felt rested and with clarity.
The first few days I was off work – I felt very unsure of myself. I was incredibly supported by my clients who were incredibly sweet and understanding but being away from my laptop, or from my therapy room, with the work phone switched off made me restless. When the children were at school and I was at home I wasn’t too sure what to do with myself. But then I began to enjoy the peace, the silence, and with that, enjoying playing with children in the garden, watching my brother help Noah ride a bike, or taking Joshua to his football tournaments. Being able to put my kids to bed, and then watch feel good TV, eating comfort food and sleeping late. It made me stronger, and it helped me reflect on what truly is important to my children and my family; ME.
As parents, we are always putting our children first. We are always fighting for their needs, fighting to access the right support and we are doing this on little sleep and zero thanks. And doing this, is exhausting. If we are not looking after ourselves, we cannot keep fighting. We cannot fight for our children, we cannot face the challenges that our children present at home. Too many times a day, I see parents bringing their children to The Butterfly Room and they are emotional, worn out and run down. Whilst I am with their children, I see them, in the waiting room. Laptops, phone calls, paperwork continuing that fight. And I often ask …who is helping you?
There are many services that can provide support for adults. You can self refer to the wellbeing team online using this link; http://www.hpft.nhs.uk/services/community-services/wellbeing-service/referrals/self-referral/
Local charities SPACE and ADD-VANCE provide a wealth of advice and support for families and of course, here at The Butterfly Room, we offer therapy for parents. Don’t feel bad for taking time to yourself – you need it. To be YOU. Go to that dinner, meet that friend for coffee, go and have your nails done. Don’t continue to fight a battle without someone fighting your corner. Call me, and I can help signpost you, and if I can’t, we will fight that battle with you. Laura
It's been a rough 10 days or so in the Burrage household. In the last 10 days every single member of the household has been hit by a sickness bug, we've moved house AND I was involved in a car accident. Its not been fun. However, we have pushed through, and are coming out the other side of things. Noah has coped amazingly well with all of the above challenges. We prepped and prepared and prepared some more for move and after some initial nervousness he has settled into the new house well. Even the sickness (something only a few months ago caused intense panic attacks and anxiety for Noah) was managed in a more typical manner.
This week however, he has been a little more out of sorts. Almost like he managed to control his emotions during all the chaos of the last week and now that things are settling down and he is feeling safer - he is letting it all out. He hasn't slept well the last few nights and this morning already started off tough. Refusing to eat breakfast, hiding under the table rather then coming to put his shoes and coat on for school and then trying to run off down the driveway rather then getting in the car all before 8.30am. I pick Noah up early on a Tuesday from school so he can go to his disability riding lesson- and normally he is fine with this. Today he had another meltdown in the playground because I had picked him up before he could ride his bike , leading to us being 5 minutes late for riding and me sporting a nice scratch down my face to evidence the meltdown.
However, the riding as always, settled Noah. We had a lovely lesson with Noah singing the entire hack, we stopped at Simmons on the way home for lunch and then Noah had a nap. I had to go into the town center to the bank this afternoon to cash up for The Butterfly Room and run some other errands.
My main mistake was not putting Noah in his buggy, however, I had left this in the boot of my car which is currently at BMW somewhere being repaired so I figured I could risk it.What a mistake. Noah , with no sense of danger nor care for my stern tone of voice refused to hold my hand and was running off all over town (no need for cardio for me at the gym this week). After a nice jog round the town, I managed to man handle Noah into the nice, quiet, respectable bank. Which, for Noah, was a red flag to a bull. The quiet, the lights, the fact I had picked him up to bring him in, or the fact I was holding on to him for dear life as I attempted to pay cheques into the company account triggered a meltdown that in my head, had known was coming for 10 days. He screamed his high pitch my-god-it goes-right-through me scream, hit, kicked, grabbed my hair and pulled it out and did this on repeat whilst I tried to soothe him, calm him and quite frankly do anything to not completely loose it right there in the middle of the bank.
And then it happened. I have heard many times as a professional the stories of my clients being judged in the street, having comments past their way or being made to feel embarrassed and uncomfortable in certain settings. I've shaken my head in quiet annoyance and wondered at people who can be so ignorant. But it had never happened to me. Until today. A women, in the bank, watching on at Noah's meltdown and looking at us in quiet disgust, loudly directed to me (and everyone else in the bank who at this point were all also watching out the corners of their eyes as they went about their day) commented 'If you disciplined that child he would behave'. My immediate reaction surprised me. I felt tears prick my eyes and I knew my face must have been going a lovely shade of red. I am not sure if it was upset or embarrassment that caused the threat of tears but somehow in the mist of Noah's screaming, holding on to my hair with one hand whilst managing to hit me in the head with his other and now having the entire bank watch on and have this women comment on my parenting I managed to compose myself. I felt angry. Really angry. How dare she? My son is autistic, he is not having a temper tantrum. He is overloaded, over stimulated and over excited and reacting the only way he knows how. He does not have the cognitive ability nor the emotional regulation to stop and ask me if we can hurry up or leave as he feels uncomfortable. He is reacting to his environment. He is not having a temper tantrum. I took a deep breathe, I stared the women in the eye and quietly replied 'he is autistic , not badly behaved' and I left. The banking and all the other errands will have to wait.
The meltdown continued. I half carried, half dragged Noah back to the car and then into it. The very posh, very new BMW that I had been loaned whilst mine is being fixed got the living hell kicked out of it the entire way home and, whilst I turned the music up to soothe both Noah and I, my mind started whirring.
At the end of this month it is Autism Week. If you google autism and click news , articles are being posted every day. The government are in talks to redesign the way blue badges are allocated so individuals with ASD can access these. Current Statistics state that over 695,000 people in the UK have a diagnosis of ASD. But yet, in every day life people have no awareness or understanding of the condition. I am sure this will not be the last time I experience the ignorance of people with no understanding of autism. I know that the majority of my clients, or my friends with children with asd, adhd or other emotional behavioural conditions have also experienced this. But it's not OK.
World Autism Week is running from 26th March - 2nd April 2018 and here at The Butterfly Room we have some ideas that we are confirming this week but I am interested in what, if anything, you are all doing? Or, if you have any suggestions for The Butterfly Room and what we can do so that my experience today, along with all those experiences of my friends and clients , don't have to be a common occurrence.
World Autism Week: http://www.autism.org.uk/get-involved/world-autism-awareness-week/take-part.aspx
It has been a while since I sat down and wrote a blog post. The Butterfly Room has become increasingly busy, and between this and my work within the NHS , I have not really thought about it. Of course life just simply gets in the way sometimes.
The main reason I am writing this post now is because , ironically, tonight I am killing time. My youngest, Noah is going through an intense separation anxiety phase and has also stopped sleeping, mainly through to being without his sleep meds for almost a month..however tonight we attempting to give them to him , and low and behold - he now won't take them.
Noah has begun to refuse food, drink and meds through fear of being sick. I'm not worried regarding food and drink - mainly because I know he won't starve himself. But the meds...I had high hopes for a night sleep after a month of surviving on 3-4 hours. The seperation anxiety means that if he wakes and I am not there he has intense panic attacks and meltdowns lasting for hours through the night; so I have been sleeping on his floor for the past 3 weeks. My back aches and stings daily now. I recently turned 30 and my husband suprised me with a trip to NYC and this week I realised that its a pipe dream to consider Noah managing me being away from him for 5 days ..so we cancelled the trip. So I needed a good nights sleep to bounce back.
And then this evening...I had been in bed all of half an hour when Noah woke just before midnight and I realised that I was in for another sleepless night I had another realisation. My eldest son will be having his first day of Christmas holidays tomorrow. He will be excited and he will be restless. But - I will be tired. I will be exhausted. As will Noah. So where does this leave me?
Without meaning too I began to compile and realise all the things that I have sacrificed since I started on this journey as an Autism mother and then with it, things I learnt to combat these or the little things that make it worth it. And then, I thought I would share it with you...
So now as I write this , its just turned 1.30am and Noah is happily watching Bing Bunny whilst the Christmas tree lights twinkle and he is at peace, He is cuddled into me, and has told me he is smiling because he is happy (he is a therapist's son after all so we practice lots of emotion recognition!) and that makes all of the above worth it. Knowing that I, and I alone am his anchor , in turn gives me peace. We're a team Noah and I. As we drove to the hospital today to pick up his medication I played Christmas songs loudly and sang along, Joshua and I did some great duets and talked about what Joshua is excited for, which made Joshua happy. Tomorrow it is my day off , as I am on annual leave from NHS for Christmas...so I will drink red bull , I have arrangements to collect Christmas treats from a local bakery, I will make gingerbread houses with Joshua like I promised and put Christmas lights around our front door because it will make the kids smile. And that's worth it. And that makes me happy. I will take time when my husband gets home to lock myself in the bathroom and have a hot bath and watch Netflix for an hour. I may take the time, when the kids are sitting quietly to call a friend and talk about our weeks for 20 minutes. I may even look into getting someone to treat my back pain.
We loose a lot of ourselves as SEN parents, as working parents, as parents in general. But its important to ensure that your doing little things to make it work. To balance the scale. So that we can still find the peace and happiness in the little things.
For a while now I have been thinking of other ways to support the children I work with. Over the past few months I have been seeing a large number of boys aged between 10 and 14 with ADHD who were all presenting with the same low self esteem, anxiety and challenging behaviour. I wanted to develop a safe place outside of therapy rooms, doctors appointments and nurses where we could work on this self esteem issue while promoting inclusion and allowing these kids to be what they are,,,,kids.
The statistics on co morbid mental health issues and ADHD/ASD are worrying. Currently around 75% of those with ASD will also experience mental illness, typically manifesting as anxiety disorder or depression. So I knew it was time to act.
I was lucky enough to be able to reach out to Goldmith Mancuso - a fantastic local company (http://www.goldsmithmancuso.co.uk/) and together Green Light was born!
Green Light Youth offers a safe, accepting and understanding environment for boys with behavioural disorders, we provide events packed full of fun and adventure for boys to meet other boys like them. This helps to build on their social communication skills, reduce social isolation and anxiety and at the same time increase their self-esteem and self-confidence. Many young people with behavioural disorders come into contact with many places where they are not understood or just feel that they are constantly being “told off”. Green Light creates an environment where young people are understood and accepted. All activities are designed to be fun and active and are run by experienced youth workers and myself. We are very proud and excited to be able to share the project with you all so please check out the website, facebook and twitter (all links below..)
I made the decision to specialise in ASD / ADHD/ ADD when working with children 7 years ago after working within the Child Development Team. Not only did the psychology of the specific impairments with these individuals interest me but I found myself in awe of these misunderstood children. I found that beneath the challenging behaviour and the anxiety ridden meltdown were the sweetest children with amazing talents. I thrived on working with these children and their families. I was empathetic to the families and I tried my best to understand what they were going through. I listened sympathetically, I supported Applications and applied for charity funding’s for the family. I patiently spend weeks working with their children on eye contact and choice making and forms of expression, enjoying the sense of achievement when I broke down the wall and helped the children express themselves. I completed research on the impact of family functioning whilst awaiting an autism diagnosis and paved the way for important changes in the ways the NHS works in relation to this assessment. I researched into sleep cycles of the ASD individual and developed sleep programmes and petitioned for local sleep services. I really thought I understood.
And then 2 years ago my youngest son was born. At 11 months old he was diagnosed with Global Development Delay, at 13 months a sleep disorder and non epileptic absences, at 18 months old Sensory Processing Disorder was added to the list and now at 2 and half we’re querying ASD. NOW I understand. I understand the pure exhaustion of a child that won’t sleep more than a few hours a night, I understand the sadness you feel as a mother when you see other children the same age as yours doing activities that your child just cannot do. I understand the way you feel when strangers look at you funny in the street because you’re having to stop every few moments so you can cuddle your son so he can get the sensory seeking sensation he is desperate for, or when you have to stop and let him touch every tree on the street on a walk. I understand that feeling of hopelessness when your child meltdowns and you cannot comfort them no matter what you try.
Not only does this experience give me insight I never had (although I thought I did) into the lives of the parents, it also makes me a better therapist working with these children. I have a passion towards helping these children that inspires me to do more, to research more, to develop more strategies. I understand the anxiety, the meltdowns and the anger. When I travel into London 3 times a year to train school staff, childminders and TA’s on working with ASD I have a passion to help these adults understand our kids and the best way to help. I understand the questions, the ifs and the desperation the parents feel in a way that no amount of training and work experience could give me. I’m one of you. I write this whilst my oldest child is at school, my sister had to take him as my youngest is still asleep and I can’t wake him. Why? Because he didn’t fall asleep until 8am this morning. I’m right there with you with the trials and tribulations of raising a child with complex needs. I’m fighting it with you.
For support I offer;
· 1:1 therapy for your child on a range of issues such as social communication, anxiety, anger and other forms of challenging behaviour.
· Social skills groups
· Sleep advice and programmes for ASD children
These past few weeks Children’s mental health services have been the talk of the government, social media and the news. From every direction people are posting, discussing and proclaiming that Theresa May has announced that childhood mental illness must become a priority and her ‘unveiling of plans to reform the mental health services’.
I see professionals getting excited at the prospect of awareness and aid to their services, parents feeling relieved that they may finally be able to get their child the help they so strongly need and deserve. The entire UK seems to have a positive outlook on this proclaimed priority.
I feel angered at these claims by Theresa May. Now as a children’s therapist who has devoted the past 7 years of my life in training and practice to work in this field that may seem strange. But let me break this down…
Theresa May talked a good talk and she got the country riled up in excitement. But let’s look closer; Theresa May did not discuss budget increase, she did not discuss the development of new services or the funded training to develop more job roles for the already over stretched services we have. She didn’t mention hospitals or outpatient services at all. She spoke about communities and schools. The problem there? I didn’t go through 7 years of training for nothing. It takes specialist training to be equipped to work with these children. Teachers do not have this training. They are trained to teach and although they provide much need pastoral support for our kids they are not responsible for their mental wellbeing. We are. The parents, the GP’s, the nurses, the Psychologist, Psychiatrists and the Therapists.
I am proud to have worked in the NHS for over 4 years before entering into private practice. I have seen the demands on the NHS and I have seen the amazing work the staff do. But I have also seen the strain. I personally researched into ASD diagnostic waiting lists within our NHS and found an 18- 24 month wait. Our children’s psychological services currently have a 9 month wait. So where does that leave these children? It leaves them without. It leaves their families without.
So I shall wait with baited breath to see the outcomes of the government’s new plans to promote childhood mental wellbeing. And in the mean time I will continue to work with these children , their families and their schools on the front line because if I can stop one child taking the wrong path, if I can stop one teenager cutting themselves or talk one pre-adolescent depressed child from taking their life, or if I can reduce the social isolation of our SEN children and if I can give my support to one family to give them a tiny glimmer of hope, then my training, the demands and the stigma attached to my role and research will all be worth every second.
I’m waiting RT Hon May….
I am very excited about today's post! In conjunction with Hertfordshire Therapy Centre I am going to be running a month on Confident Parent Workshop's!
Following feedback from my clients parents from my Social Skills Group I have designed 3 workshops to focus on the main area's that Parent's felt they needed help and advice with. The workshop's will be informal, with a chance for Parent's to gain advice and strategies to manage their child's behaviour whilst having the chance to meet other parents who are experiencing the same issue's and see what has worked / hasn't worked for them! The idea is to give parent's the confidence to put boundaries and strategies in place and give some support to the idea's you may have!
The workshops will run on Wednesday evenings 7.30 - 9pm and each week will have a theme. The first; on September 9th will be Anger and Anxiety , the second centre's around Sleep and the final workshop is just for the dad's out there!
Please contact me on firstname.lastname@example.org to book a place - places are limited and are beginning to book up!
The sessions are £15 each (£25 a couple).
As part of my role as a child therapist, I often work with children with ASD or social communication difficulties providing play therapy sessions to help build upon these skills. Although each therapy package is tailored to meet the child's individual needs I work on the same basic principles when working with this client group. Recently , one of the families I work with was kind enough to photograph and document one on my sessions so I could share with you all how I work!
Cars and Trains:
Within this session I used cars and trains and other vehicles to work on my clients turn taking skills and imaginative play. Luckily my client's little sister loves to play as well so we work on both children having turns with the vehicles, we narrate our play and I create themes such as trains falling off the track or the cars 'bumping' so we check the passengers are ok! And of course, when passing vehicles back and forth we concentrate on eye contact!
Following on from turn taking, using sensory balls are a fantastic motivating way to encourage turn taking skills, to practice following instructions and shared enjoyment !
Play Dough is great tool for explorative play, to work on sensory discovery and imaginative play! It encourage's children to choose (by giving different colour options) and confidence building!
Again, focusing on explorative and discovery play - sensory time is a great way to do this. Dependent on the child I use a range of different toys - with this client we enjoy searching for stars in lentils! This activity helps my client focus, follow instructions and explore different textures.
Bubbles and Balloons!!!
I always end my sessions playing with bubbles and balloons! We work on obtaining eye contact , following a point and requesting more with these activities , and mainly because its a fun way to end a session :)
If you think your child would benefit from therapy with myself then please do not hesitate to get in touch! I am currently fully booked for July but you can add your child's name to my August Waiting List.
I don't think I've ever met a child who doesn't like to play with Sand (of course excluding children with sensory difficulties). Along with being fun and bringing enjoyment Sand Play can also be a valuable tool when working with emotionally traumatized children. For children who are scared or too damaged to speak the non verbal atmosphere surrounding sand play can be incredibly therapeutic. A non directive approach by the therapist is undertaken; Using small world figures, toy animals, objects and marbles the child is free to explore and develop their expression of situations. make assumptions and make behavioural changes all in a secure and comforting environment.
For this reason Sand Play is valuable when working with children who are victims of neglect, abuse or trauma. It can also be used as a form of family therapy and with adults alike.
If you think your child would benefit from Sand Play, or would like more information then please get in touch. Also keep a look out for my child workshop summer dates coming soon!