Since Tom was about 6 months old, we have lived within the world of hospitals, illness and disability. With that comes a lot of heartache, exhaustion and also a new “normal”.
Early on, I realised very consciously that no human being can maintain that level of caring and emotional alertness endlessly. At some point, the body simply stops. It is no surprise to me that the level of chronic illness in carers is staggeringly high. Fibromyalgia, chronic pain and fatigue and any number of other illnesses are commonplace among those of us whose life is spent caring for those we love.
Harder to quantify and describe is the emotional toll caring takes. Depression is more or less to be expected, and stress levels tend to be extremely high. We carers rarely spend much time looking after ourselves. After all, we are healthy, strong and love the people we care for. Mothers in particular find it very difficult to think of themselves as “carers”. We look after our children because we are their mother, simple!
Simple.
And tangled, because our children take far more looking after than that mythical creature known as Norm (short for normal kid in this case). Norm usually takes a lot of looking after in infancy and toddlerhood, but generally starts finding his own identity when starting school. Norm’s mum often returns to work when he turns 5, sometimes part time, and Norm rather likes going to kids’ clubs after school. Norm has friends and occasionally goes to play dates, even sleepovers. Norm learns to ride his bike and takes his cycling proficiency test in Year 6, ready to cycle to secondary school with his friends. Norm’s teenage years can be turbulent and seem to come as a shock to his parents who by this time have experienced a number of generally peaceful years of growing independence.
Norm is not “easy”. I have no doubt that parenting is always a difficult journey. And Norm is not “one” child. Norm can be the loud outgoing popular kid who is invited to all the parties, but he could also be the shy awkward member of the class who is often alone. Norms are a hugely varied bunch. Good, bad, gorgeous, not so gorgeous, clever, slower to keep up etc etc…
The one thing that Norms do have in common is that they all follow a developmental path in line with what we expect children to do.
I have a Zack, a Kesia and a Tom. And strangely enough, statistically improbably, none of them is a Norm…
Funnily, the one who is closest to being a Norm is Tom. Despite his complex medical history and present, in many ways he is a Norm. As he is getting older, we are realising that he is less of a Norm and more of a Tom. He appears to be a Norm when he is with a group of 5 year old boys. As lovely as that is to see, helping him to navigate a world which insists on placing him with 9-10 year olds is extremely difficult.
I use Tom as an example because his needs are more concrete and easier to quantify. Tom is tube fed which involves two feeds a day and an overnight pump feed. I make his food each day and “plug” him in. As a task, it is fairly straightforward. It doesn’t take too much time, though he hates the day feeds and it can be challenging to get his cooperation. Emotionally, tube feeding takes its toll. Tom can eat so there is a huge pressure to encourage him to eat as well as to keep him healthy by using the tube. His dependence on the tube keeps him from developing a more normal relationship with food but also with his peers – food is an incredibly social phenomenon. In order to keep Tom’s pain at bay I take him to Riding for the Disabled once a week, and to hydrotherapy also once a week. He needs to do physiotherapy exercises daily and has pain medication and growth hormones every evening. Once a fortnight we are at Great Ormond Street Hospital (GOSH) for feeding therapy. These are the daily practical things needed to simply deal with the tangles of Tom’s condition. On top of that are his doctors’ appointments of which there is usually at least one a month.
For any one person to deal with Tom’s needs is asking a fair amount. The trouble with being a mother is that I have a strong need to do everything I can to help him progress. This is good for him as it gives him the best chance at life that he can have. Not so good for me as my survival instinct does not kick in very well. My biggest issue, however is the emotional impact of all this care. When Tom is sick, I ache. When he is sad because he has no friends to ask home, a part of me breaks. When he achieves something new however little, my heart explodes with joy. The rollercoaster of emotions is miles high, goes down to untold depths and is pitted with loop the loops and abrupt changes of direction.
Simply put, caring for a little boy like Tom is exhausting.
Many people find it difficult to understand that of my three children, Tom is the easiest to look after.
By a long long way.
Children with high functioning autism (and don’t get me started on “high functioning” – that’s a whole new blog entry) are living in a world they do not understand, but which they can imitate sometimes very well. I often think that having Asperger’s syndrome must be a little like finding yourself in Japan without the ability to speak Japanese – and only a very limited ability to learn the language. As their mother I have spent my life trying to learn their “language” and help them learn ours, Norm’s.
This is where I stall. How do I explain what is so simple to live with, yet so so different to Norm? And let there be no mistake: simple bears no relation to easy.
Simple:
My older children misunderstand tone of voice. Learn to speak as neutrally as possible and explain in simple terms what you are feeling. Keep your sentences as short as possible. Verbs are especially difficult – nouns are good!
Tangled:
Tom is a typically emotional little boy who loves imaginative play and acting. Try to teach the other two children that this behaviour is acceptable. Try to teach Tom that his brother and sister often do not understand what he means and often get it wrong. Fail, and you have to deal with sibling wars (not Norm sibling rivalry – ratchet it up several notches).
Simple:
Zack and Kesia are extremely sensitive to body language and react very strongly to it (usually negatively). Learn to change your body language to avoid meltdowns (rage gone wild) or shutdowns (little girl collapsed on the floor and unable to speak).
Tangled:
After ten years of successfully doing this and helping my children cope with the world, I lost “me”. My voice was the voice they needed, my body spoke the gestures they needed. In all of that my sense of identity past that of mother was eroded nearly to the point of extinction. Turns out this was a mistake. By losing that sense of self, I left myself open to breakdown. Boy did the fall hurt!!
So now, three years after breaking and slowly rebuilding myself I wrestle daily with the needs of my children and my own need to keep my “self” strong and alive. Tangled.
I started this post with a desire to talk about respite. Do we need it? Why? Do we deserve it? What purpose does it serve? And I find myself many paragraphs further down having only touched the surface of the reason for respite…
[My need to check on technology calls for a break… to be followed shortly!!! But I need to have a look at this whole bloggy world to check on a few details!!]
That little anxiety has been assuaged, and I have not lost a whole lot of words!!
I entitled this post “Respite – why?”. I could keep writing for page after page which frankly would get boring!!! I think I have given any readers a little insight of what toll daily life with “special” children can take on parent carers. Children such as these who need further care from various institutions (and my Zack is one of those) benefit from carers who work in teams, in shifts and whose emotional attachment to those children is far less than a parent’s.
Parent carers live day in day out with the practical needs of their children, their emotional needs both in the present and in the future. They live with the knowledge that life will be a battle of one sort or another for their children, one which those children may not be able to wage. They live with the knowledge that they may not always be there to fight beside those children. And they do all this willingly, with love and passion and with the goal of helping their children become as independent as possible.
If we do not give these parents respite, they will break. To the detriment of their own health both mental and physical. To the detriment of their children’s well being. To the detriment of society, left to care for those children. We really must look after them, if only because they do work that we as society cannot do with such dedication and at no cost… The cost to us is respite – a tiny price to pay for the care they provide our most vulnerable children.
I am currently basking in an uncommon wave of calm. Just enough has moved forward today to make me feel that things will indeed be alright in the end. Not a great deal happened. I had a two hour long conversation with a psychologist who left me feeling that she understood how seriously Sweet Girl must be taken. As we ended our talk she also let me know that she agreed with me about the need to sort out Little Man’s schooling.
Today was the day of Toms annual 
For several years now, thank to 
Simple Tangles 