Oh you are a parent, I thought you were a professional…

“I’m ringing to speak to a professional about my child. I have been chasing them all week without success. I get through on the phone and explain that I left a message earlier in week and really need to get hold of them. I ask when they are back in the office. They check the diary and say that the person should be in the office that afternoon. I explain I have some meetings but would appreciate them passing a message on. I am asked who I am and I explain. I’m met with a ‘Oh…You are a parent, I thought you were a professional’. Inside I let out a sigh…”

It can be really difficult when you don’t quite fit into the perception of how ‘a special needs parent’ is expected to look, act or talk. You ask questions. You check and double check that people have done what they have said they would do. You set about researching and exploring options. As humans we are very good at creating groups and these can easily become in-groups and out-groups:  the ‘professionals’ and the ‘parents’. In the current SEN system, a professional recommendation carries so much more weight than a parental view. Specialist training courses are often for professionals only or if it for parents and professionals, it is generally delivered by a professional. At best there is a ‘parent slot’ on the agenda. This unwittingly reinforces the ‘them’ and ‘us’ divide.

So there you are as a parent, finding yourself in a multi-agency meeting faced with ten or so professionals looking at you and feeling like a specimen under the microscope. In this situation you have two choices – you can fit in to your assigned role and be quiet or gently push (and often have to fight) for equality and for your views to be heard. With limited resources and funding, being challenging can result in you becoming not just ‘a parent’ but ‘a difficult parent’.  Or you may find yourself being classed as the ‘overanxious parent’ and somehow this carries with it the implicit view that either you are imagining problems or in some way are causing them.  Before you know it the ‘difficult’ or ‘anxious parent’, the one who won’t take no for an answer or who asks uncomfortable questions, has somehow become ‘unreasonable’.  And once you have the role, of the ‘unreasonable parent’, it is even more difficult to change how people see you and get them to start listening to you. Being categorised as a ‘difficult or overanxious or unreasonable parent’ unfortunately brings with it sterotypes and prejudice.

Stereotypes are activated automatically and often unconsciously, as in the phonecall example above. Prejudices about any out-group are easily formed and unfortunately very difficult to change. People are also very good at preserving their stereotypes and keeping you in that out-group.  Allport’s quote from 1954, is still very relevant to today:

“Prejudice may be reduced by equal status contact between majority and minority groups in pursuit of common goals. The effect is greatly enhanced if this contact is sanctioned by institutional supports (i.e. law, custom and local atmosphere) and provided it is of a sort that leads to the perception of common interests and common humanity between the members of the two groups’.

One of the current professional buzz words at the moment is ‘co-production’ which is all about including parents, as equal partners. However, professionals can be very threatened by the inclusion of parents on the same working level as the employed staff. For co-production to work and for change to happen, there has to be some prerequisites present. We know the presence of anxiety and/or threat between groups unfortunately increases stereotypes and prejudice.  We also know that just having regular contact between different groups, e.g. professionals and parents does not reduce the prejudices unless that contact is of equal status.However much ‘co-production’ is desired, if parents and professional feel anxious, or threatened, or not of an equal status in the meeting then nothing will change.  For prejudice and stereotypes to reduce people have to become aware of the stereotypes at play – and be willing to work with them rather than just pretend they don’t exist.

So what does all this mean if you find yourself as the ‘anxious, difficult or unreasonable parent’. It is really important that you recognise that stereotypes are present and that this will impact on your relationships with professionals. Changing those stereotypes will involve you discussing the stereotypes directly with the professionals, highlighting where you don’t fit the stereotype and emphasising your uniqueness (you are so much more that just someone who is ‘anxious, difficult or unreasonable’).

It is really important to remember that although professionals have lots of knowledge and skills, they also have a lot of power. In situations of power imbalance, unfortunately stereotypes can quickly be formed about you as a parent. If negative, these may impact on your interactions with staff. You can challenge the stereotypes people hold most effectively by talking about them and helping them to see you and your child as individuals. Remember if those professionals took a walk in your shoes, the world would look a very different place.

 

Sleep is so precious

“The ongoing challenge for me is my sleep. When my child was small they didn’t really sleep at all and they also got up very, very early….then as they got older it was anxiety stopping them going to sleep or waking them up in the night. Although medication has helped them improve their sleep, I’m now struggling with my sleep. I haven’t slept well for years because of their sleep pattern, and my worries, and if I’m honest because I often stay up too late, just trying to find a bit of time for me after they have gone to sleep”.

The day is often so busy that by the time they go to sleep you hang on to that little bit of ‘you time’ when you can read, or watch TV or just be on your own with no demands. You know that staying up is a bad idea. You know you ‘should be’ asleep in case night duty calls but at the same time you need that ‘you time’. The difficulty is this sleep pattern easily becomes a habit and long term sleep deprivation unfortunately has significant health consequences for you.

We can’t neglect our need to sleep, just as we can’t neglect our need to breathe, eat, or move – these are our basic needs. Not getting enough sleep is linked to an increased risk of accidents, mental health problems and poorer physical health. When we sleep, we don’t just ‘sleep’. We pass through cycles of sleep lasting about 90 minutes; they start with lighter sleep, increase to deeper sleep, we then go back to lighter sleep and finally a period of dreaming before the whole cycle starts over again. As the night goes on with each cycle you spend less time in deep sleep and more time in dreaming or REM sleep. If you are awakened during deeper sleep periods  you may find yourself groggy and find it difficult to function.

Studies show that being deprived of sleep can cause problems with appetite, temperature regulation, metabolism, obesity and eventually not being allowed to sleep can even result in death. There is a reason not allowing someone to sleep is used as a form of torture! When someone doesn’t get enough sleep, the next day they will experience irritability, severe fatigue and will show impaired intellectual functioning and judgement. The following night they are likely to spend more time in dreaming sleep which may be an attempt to catch up. Unfortunately getting rid of a ‘sleep debt’ isn’t easy, particularly when the ‘not sleeping enough’ has become chronic. You can’t actually catch up on all your lost sleep and your body doesn’t need you too. However, you can take practical steps to improve the quality of the sleep time you have available.

There are a number of things that can help with your sleep. They often seem rather obvious and just common sense but the reality is they can be challenging to implement. Knowing what to do and doing it are very different things. Sleeping during the day can have a negative impact on your sleep as can drinking too much Caffeine. Using a Tablet, Phone, Laptop or TV close to bedtime can disturb your cycle and the light can fool the brain to think it is still daytime.  Sleeping tablets are addictive which can actually make the problem worse. They can help in the short term to get into a new sleep routine but you should only use them for a short period to stop dependence occurring. Are you getting enough exercise to help you feel physically tired at bedtime? Do you go to bed when you feel tired or do you stay up doing jobs or having some time alone? Just think if you traded that ‘you time’ for some extra sleep how much better you may feel? Is your bed comfortable, the right temperature and the room dark enough? Do you have a bedtime routine to help your body know it is time to wind down? This can also help if you are woken in the night as a routine can help you get back to sleep. Do you get up at the same time each morning? Going to bed earlier is better than ‘lying in’ which can make  you feel worse. Ideally you are aiming at 7-9 hours of sleep per night.

You are doing an amazing job to keep going, living with the effects of chronic sleep deprivation. Take a moment to think about what you can do practically to help your sleep.  You may not have a choice about being woken up but you do have some choices about the things you can do to support your body to rest and get the best out of your available sleep time.

 

 

An expert parent

“Sometimes it is important that you are ‘just mum’ the voice on the telephone said. I had just been invited to a ‘What is autism?’ session and was wondering whether it was worth me taking half a day off work to attend. This session was a step before getting a referral for the child and adolescent mental health service so I suspected I would have to jump through the ‘seen to be willing’ hoop to get some additional support for my child. However, given my professional background, I did wonder whether I would get anything out of the session and had decided to ring up and ask that question. The words of the professional on the telephone reminded me how powerful one phrase can be. With the words ‘just mum’ there is a reminder of the implicit power imbalance and the illusion of ‘the professional’ who knows best.”

You will likely encounter the you are ‘just the parent’ type of professional at least once along the way (and probably more than once). It can be really helpful for you to work out who you are and what your role is on this autism journey. If you unpick what ‘just a mum’, ‘just a dad’ or ‘just a parent’ actually means you may find some interesting answers which can strengthen rather than undermine you. You share many things with all parents – you are a teacher, a coach, a nurse, a taxi driver, a counsellor, a cook, a referee, a entertainer, the list goes on and on… Some of you also have professional backgrounds which you bring to your ‘parent role’ and your knowledge/skills does not just ‘vanish’ when your child receives a diagnosis of ASD. However, even without a professional background, all parents gain a multitude of new skills on their autism journey and it is helpful for you to add them into your list of who you are. As you learn and seek advice and information you find yourself becoming an advocate, a lawyer particularly specialising in educational law, a benefits adviser, a dietician, a researcher, a detective and even a hairdresser (until you find an autism friendly one). You will develop skills in occupational therapy, speech therapy, specialist teaching skills and before you know it you are on your way to becoming an ‘expert parent’. Just take a minute to write down all the roles and skills you have acquired and think about how far you have come!

At the start of this autism journey you want to find ‘an answer’ from another expert… you read every book you can, you search the internet for ideas, you go to courses and talks to find the person or the idea which will help make thing better. You wonder if I buy this book, or if I do this diet or if try this therapy – will it make a difference? It’s not about seeking a cure….it’s a natural response to wanting to make everything better and help your child. Yes, you are still learning and each new professional you meet has the opportunity to add to your knowledge. However, there is also sense at the start that these professional people have ‘the answers’ and you don’t know what they know. So it can be rather a shock if you find they don’t meet your expectations. Now that is not to say that professionals don’t have good answers and advice – there are some fantastic professional people out there. But there are also professional people out there who know less than you. The line between professional and parent isn’t as black and white as you are led to believe. In fact, as you become an ‘expert parent’, you may well have read more books and attended more courses on the subject than the person giving you advice.

However, as you become the ‘expert parent’ out comes a new phrase which you may hear….‘you are the expert on your child’. Sadly this one often comes with the suggestion that you don’t need help or services to support you because you are doing such a great job. It is so frustrating to find yourself both ‘just a parent’ when you question a professional and to then find yourself being seen as ‘the expert parent’ when there is no support or services on offer.

It doesn’t have to be like this. In healthcare there is a phrase ‘no decision about me without me’ and that is what we should be aiming for within our families. You should be a partner in this process.  The key words for you to learn are ‘shared decision making’ and ‘person and family centred care planning’. You can be fully involved as a parent as much as you want too. Are you involved in setting agendas for meetings? What if you chaired a multiagency meeting? What would you do differently? What if you wrote the notes and action plan? And if your child is able to be involved, what role would they have? The first step in changing the ‘just a parent’ dynamic is believing in yourself as a parent. Changing the power dynamic means also becoming aware of it and gently challenging it, by learning the language of person and family centred care planning and using those words to support you and your child.

Be aware of how people use words. Don’t let anyone undermine you or your role with their words. Your opinions (and your those of your child) are important and they should be both sought and valued. What you want for your child is that as they grow up they are not defined by any label. You should want the same for yourself….you are not ‘just a parent’ or even ‘an expert parent’….you are a parent! And if having a label to call on in your head helps you in difficult times, then remember in my eyes you are a ninja parent!

Useful reading:

Click to access my-life-my-support-my-choice.pdf

My child does that too…

“It’s so hard to explain to other people what our daily life is like.  Our family have struggled for years with school refusal and day to day life is so challenging.  I will always remember sitting at a party trying to explain to another parent what it is like for our family each morning. I was met with the words ‘my child does that too sometimes, isn’t it pretty normal for a child to occasionally not want to go to school?’ and inside my heart sinks. 

I try to explain about how difficult it is to manage the meltdowns every day. Waking up wondering what each day will be like. ‘Will you be able to get to work?’ ‘Will your child leave the house?’ ‘Will you be able to help your child feel better?’ I then realise that the other parent isn’t really hearing me. Maybe it is too unimaginable for them to hear or maybe they think I’m exaggerating or maybe I’m not explaining it well enough…but whatever the reason they just don’t ‘get it'”.

My experience is that meeting other parents living with autism can give you such a sense of relief. When you talk about your child’s difficulties and you know that the words ‘my child does that too’ come from a place of empathy and understanding, rather than disbelief or judgement. Yet for a parent at the start of this journey, reaching out to a new group of parents can be one of the hardest things to actually do. To pick up a phone and ring a helpline or a support group… To walk into a meeting with a group of people you have never met…. To meet people who already know each other’s stories and don’t know you.  If your child is undiagnosed or under assessment you might wonder if you are allowed to go yet? What if you are wrong about the diagnosis and you shouldn’t be there? Should you apologise and say you aren’t sure if you a member of this club? Thoughts go through your mind… ‘What if my child isn’t like their child?’ ‘What if they don’t understand me?’ and suddenly it is so much easier to just not ring up or not walk into that room.

Psychological studies have shown that families with autism within them are often dealing with significant levels of strain and stress. Yet they also show that these parents are incredibly resilient and versatile. So what makes the difference to the families who thrive? The answer is consistent across studies: access to both informal and formal support networks. You can get information, practical ideas, advice and emotional support from meeting parents in the same boat. Developing sources of social support from people who ‘get it’ make a real difference to supporting yourself, your parenting and your family.

Everyone in the support group has walked through the same door as you. If your child is undiagnosed then remember everyone in the group have experienced the same doubts and confusion of seeking a potential diagnosis. The person on the end of the helpline is likely to have rung it in the past. They are a parent just like you. Take a deep breath and pluck up the courage to expand your support network.  Don’t give up, if you find a particular group isn’t for you, then find another group. If a face to face group is too difficult then join an online group. Read an online forum. It doesn’t matter what you do to meet others in the same boat as you. What matters most is that you reach out, connect and build up your support. Yes, it takes courage to take the first steps but the support of people who ‘get it’ is invaluable.

‘We may have all come on different ships, but we’re in the same boat now’ Martin Luther King Jr.

You don’t have to do this on your own. It can be hard to reach out to a new group of parents but if you can take that step you can find people who will ‘get it’. Adding to your network of social support can help you, and your boat, to stay afloat and sail.

I wish I could just stay in bed

“Some days I wish I could just stay in bed and make it all go away. I’m trying my best to help my child but I feel like I am getting it all wrong. There are so many things to think about: routine, sensory stuff, appointments, speaking to professionals, staying calm, managing meltdowns on top of all the everyday parenting demands. It can just feel so overwhelming.”

Dealing with autism in your family can be overwhelming. You are faced by so many stresses on top of the usual everyday stresses of family life. You want to show the world you are coping but underneath that ‘coping image’ or ‘trying to be the autism super parent’ many of us are having times when we are really struggling.   We all get the days when it feels too much but we don’t always admit to it in public. It can be very hard to admit to a bad day or a bad week or a bad month. This makes that bad day harder as you can end up telling yourself off: ‘you should be coping better’, ‘you should be managing your child better’, ‘everyone else is doing a better job than you’. Unless you get together with other parents who are in the same boat and who are open to talking about their struggles and ‘how bad, the bad days are’, then you can be left thinking that it is just you who feels overwhelmed and can’t cope.

Sometimes we really need someone to just say it is OK to have a bad day. Honestly, it is OK to let yourself off the hook. You are allowed to have a PJ day if you need one. Does it matter if your house is clean today? Does it matter if tea is a takeaway or a ping meal? Looking after your children also means looking after yourself. Think about what your children need to thrive? They need food, water, fresh air, exercise, sleep and emotional warmth. Are you getting those things too?  There are lots of ways to self care without booking yourself in to a spa (although that is nice but not very practical). Take a moment to think about what you need right now. If you need to sleep, can someone watch the family for a while? Can you all get outside for a walk in the fresh air? If that’s not possible, can you go and sit in the garden with a cup of tea for 10 minutes? Can a friend or family member come over or can you phone a friend? Can you all sit on the sofa and watch a film and pretend the living room is a cinema. Can you all get in the bath with lots of bubbles? It can help to have a list of bad day ideas which work for your family to fall back on so you don’t have to think about what to do.

On your bad day it can also help to be realistic about what you can and can’t do. If you try to do too much and fail, you will just end up feeling much worse and the bad day can turn into another bad day and a bad week or a bad month. Try to just set yourself one small job to do and one self-care activity to make you feel better. Then set about doing those two things. Anything else you achieve is a bonus. At the end of the day, when you get into bed, take a moment to look back on your day and remind yourself you have survived another day! Despite it being a tough day, you still managed to do the one job you planned and you also managed to do something to look after yourself. That has to be better than verbally beating yourself up.

Parenting is a tough journey. Parenting and Autism combined is a tough journey. It is OK to have a bad day and that certainly doesn’t mean you are failing as a parent. Remember it is just as important to look after yourself as well as looking after your family.