Surrey Outdoor Learning and Development
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.
Do I really have an ally at the Authority??? Maybe!
Sweet Girl’s teacher also made a decision which I think may make a vast difference to her school life. In order to allow Kesia to stay with one teacher, in one classroom all day, she has changed maths groups. It was a brave decision by a teacher to compromise a little girl’s learning by dropping a couple of groups in order to help her attend school ?full time?! And one I am extraordinarily grateful for. Sweet Girl came home at lunchtime more stable and happy than I have seen her in months.
The storm is raging outside.
Our ongoing battle with the Authority for Little Man is in full swing.
A new battle with the same Authority looms in the near future for Sweet Girl.
I was obliged to send a letter into school this morning which promises side winds of gale force strength.
The storm is battering at my door.
But just now, I am in its eye. I am happy, and calm and enjoying this moment of brief respite!
Today was the day of Toms annual cardiac check up. Little Man, due to his Noonan Syndrome, has a congenital heart defect. Had a congenital heart defect. It’s a funny world, this world of modern medicine. At birth, his heart sounded quite the way it should. A few weeks later, this was no longer the case… lots of unpleasant sounds were coming through the doctors’ stethoscopes, resulting in quite disturbing faces on said doctors.
In 2004, the doctors confidently went in through his arteries (starting in his groin), fairly sure that they could open up that pesky pulmonary valve using a clever little balloon. They had not counted on the stubborn plasticity of this valve, which stretched for about an hour, then returned to its former, more comfortable squashed self. All of which would have been fine if only it was letting the blood through!! It was not a wasted endeavour, however, because it allowed the surgeons an opportunity to “see” the heart of the problem (see what I did there, with the punning?!). Not only was Little Man’s pulmonary valve far too narrow (stenosed), but the whole area around the valve was much too small.
Two years later, in 2006, everyone was ready to go in and fix this pesky valve. Open heart surgery is a scary thing. We were incredibly lucky to go through it with a two year old. I know that Tom will have to endure this again in the future sometime, and I am not looking forward to helping him handle the anxiety of what is quite major surgery. A two year old simply takes things as they come. Signing consent is something that is worthy of a post in and of itself (note to self… write about consent).
As it was, Little Man made open heart surgery look simple. We were out of hospital 3 days after booking in. Minus a pulmonary valve, and with a widened tract thanks to a bovine annular patch!
Since then, we see the cardiologist yearly. I’m pleased to say that a thorough echocardiogram today showed almost no change since last year. A very boring result, which is marvellous! Tom was wonderful, lying very patiently while Senetta poked him in the chest, sometimes quite hard to get a good picture. I had my first good appointment with a registrar, and have nothing but praise for Dr Henning Clausen… thank you good doctor for listening.
Next appointment is next year… Hopefully by then we will have a happier overall picture, but it is rather lovely to know that “my heart is really good”, to quote Little Man as he gave the news to his Daddy on the way home.
Today was a day of hearts differently too. The thing is, that Great Ormond Street Hospital is familiar to us because Little Man sees so many specialists there. But unlike for other families, it is not a place we live. Yes, we have had a few inpatient stays there, but never for more than a few days at a time. Some families spend weeks and months there. I’m not sure how the mums and dads manage, other than to know that when there is no choice, we rise to the occasion.
I know the exhaustion of spending hours and days sat in a chair by the bedside of a child who is ill. I know the brain numbing experience of hours and hours of the Disney Channel. I know the desperation of never feeling really clean. Quick showers with a limited change of clothes is no substitute for home washing! I know the sag of shoulders that accompanies that mediocre cup of tea made in stolen minutes in the parent kitchen. I know the endless waiting for nurses, doctors, medication, decisions. I do not know the impact of this life over more than a few days, but I do know that as much as the children struggle and suffer, the parents do so in equal measure. Not to mention that horrific adult component that adds knowledge of the big picture, and parental instinct that makes you ache each time your little one winces.
So… at the end of last week I put out a little post on my Facebook page: “All GOSH peeps, I’m coming up! Who needs a hug? A coffee? Anything else? Care packages can come your way!”.
I was so pleased that two mums were able to respond, and Little Man and I duly made our way first to the bone marrow transplant ward to visit Eric’s mum. Her little boy is battling the same leukaemia that hit our Little Man, Juvenile Myelomonocytic Leukaemia. A real nasty. And Eric is just about to undergo his second bone marrow transplant in a bid to cure him. His beautiful Mama has another little boy, only five years old so she is juggling an impossible situation. What can I offer? Very, very little. A hug, an easy “hello, I know you, but how good it is to feel you, to see you, to hear you”, a coffee brought from the local starbucks, and a mini care package. I had found some sweet packs including a shower gel, body lotion and lip gloss, all shimmering! A body scrub to top it off and some dry shampoo for an emergency pick me up… And unfortunately, the coffee is transient, so I added a mug and some sachets of that substitute of Starbucks, Via! I have it on good authority of another bone marrow transplant Momma that it’s not bad at all!!
We only had a few minutes together, but I hope that she got just a little boost today… just enough to get her through the next few minutes of an endless day!
My other wonderful friend was simply too exhausted to meet me. I am so so pleased that she texted me to let me know she couldn’t! She’d had a day of team meetings with doctors, nurses etc etc, in the unbelievably complicated care of her little girl. I didn’t need to see her, I just wanted to offer my heart, a break if that’s what she needed. And actually, it wasn’t what she needed. She needed to spend time with her girl! So Little Man and I popped to the door of the ward long enough to catch a nurse and hand over our care package.
Sometimes, I hope what’s needed is for a friend to offer a visit, but be equally happy to bow away if the time is not right. So that is what my heart gave to Mama S.
All you Mamas in hospital, I send my love to you, courage in droves, hugs and the encouragement to allow you to say: Today, THIS is what I need.
Today, it’s all about the heart.
Having reached the decision that you need help as a parent of a child with special needs, what then?
Hang on a moment, that seemed easy! I have yet to come across any parent who came to that decision easily or swiftly. In fact, most parents I know who have special children do not get help and many do not want it. After all, asking for help must surely mean that you are conceding defeat, failure? That you are unable to do the most simple of jobs: be a mother? And that’s before we embark on the question of relying on welfare benefits which can be very difficult for some; before we touch on the fears that social services may see you as a failure and take you children away; before the reality truly dawns on you that your child is not Norm.
What I’m trying to say, to make others understand is that we hate that we need help. We come to this point out of necessity and desperation, often at our lowest ebb. Should you come across a parent like me, who is getting what may seem to be a lot of help from various agencies, please try not to assume that we are “sponging”, that we are taking advantage of the system. I hope that by giving a glimpse of the process by which we can access help, you may understand that it is a dreadfully intrusive, clinical and impersonal process which forces you to focus on nothing but the worst aspects of your life, of your child.
My journey through this maze started with a little boy who was not expected to survive to adulthood. Tom’s hear condition and leukaemia were life threatening, and that label opens doors. With that little sentence we enter the reality of my life. My children have significant difficulties in life, and part of my job is to access every thing that might help them. So I have learnt to play the game, to accept that certain words (when spoken in truth) will prick people’s ears. Of course, when we arrived back in England with a little boy who was quite literally fighting for his life (oh, and his fight had a serious flaw in that he just wouldn’t eat), I didn’t know any of this.
I had a wonderful health visitor who knew the various avenues to follow. So..
We were referred to Crossroads, a charity that helps carers by providing a few hours respite each week. I had no idea how to use such help. I had been “coping” for months on my own while Nick went to work, driving hours to hospital for Tom and managing to keep the other two children afloat. Now we were back in the UK, many things were easier. The local hospital took over much of Tom’s care, we had an amazing community nurse and I had friends who were able to help. So the idea of someone coming into my home to help was baffling, overwhelming and at a loss to make use of it. And this is where a part of the system worked so well for us. Crossroads sent us a wonderful lady with a wealth of experience who gently yet firmly took charge. She taught me to rest, to go to sleep or have a bath. To occasionally go out for a walk or even go to the dentist when needed. She taught me that for a little while I could hand over and that all of us would benefit.
Simultaneously we were referred to our local hospice, Chase. How can I put into words the help and support they provided? Going to the hospice was like stepping out of the world. Tom’s illness stayed with us, but it was in some strange way safe and “ok” while we were at the hospice, sheltered from the outside world. The peace there gave us true respite and there was always someone to listen. We were with them for three wonderful, sad, happy and tragic years.
So from the time we arrived in the UK with our little scrap of a baby until he was three years old we were floated along the ocean of life in the boat labelled “life limited”. All the care we received was provided by charity, a remarkable aspect of British society. More remarkable still was that these organisations work so well with the “official” bodies such as doctors, hospitals etc…
It’s safe to say that I didn’t have to fight for any of this. The fight began when we were told to apply for DLA in Tom’s name. Disability Living Allowance is a benefit payable to those who require more care than their “Norm” counterparts. Application is via a form and backup from doctors and other professionals. This is not the time or place to go in any depth into that form. Suffice to say that it is long, involved and painful to complete. One must detail all the negative aspects of the applicant’s life, and how much help they need.
As the mother of a child who was so ill, my main coping mechanism was to focus on the positives of his life. And yet, I now had to look the other way. And looking the other way took me straight into the deep dark ocean of grief. For the little boy I did not have, for the little boy he might have been, for the pain he endured, for the treatments we so hoped would make him better but that could also make him so ill. And it put me face to face with the fact that he might die.
I hate DLA forms.
With a vengeance.
Despite his diagnosis, treatment and all the care he needed (chemotherapy, heart surgery, tube feeding etc etc etc), Tom’s application was denied. I am still fairly sure the denial was a formulaic one and that noone actually read the form. But that day, the wind was taken suddenly out of my sails. I had been convinced that asking for help was the right thing to do in spite of my fierce independence. While filling that form out, my intelligence told me that Tom was indeed eligible for the help and that this was precisely why we paid taxes. And yet he had been denied.
Somewhere in that denial was born a little spark of defiance. A sense of justice denied that was simply wrong. That spark has little to do with my children. The denial of fairness and justice is something I see every day and every day I am incensed by it. It is left to those of us with the education, intelligence and strength (oh, and stubborn pig headedness) to stand up and say, “this is not fair, you are are not playing according to your own rules”. In the case of Tom and his DLA, that battle was fought by my lovely health visitor. A phone call sorted the problem out.
Oh, you may remember that I hate DLA forms. Both of my boys are entitled to DLA and new forms need to be filled out at least every three years. Last week I was told by Kesia’s paediatrician that I must apply for her.
I hate DLA forms.
This is how I tumbled into the world of respite. Through little man Tom and his critical illness. The next instalment is how we accessed respite and help for Zack, and how we have yet to succeed in accessing it for Kesia…
When I wrote about Short Breaks, I was referring to a form of respite that gives parents a break from caring for a child with special needs, but mostly an opportunity for growth for that young person.
With little man Tom, our respite needs are quite different. Although he would undoubtedly benefit from a similar scheme in the holidays, this is unavailable as far as I know so far for a child with his disabilities. Tom does not have autism and easily gets along with other children, making outings to the park a pleasant experience. In Tom’s case, the need for respite is a more traditional one. Caring for him is a physically and emotionally demanding task and we simply need a break every now and then.
For several years now, thank to social services, Tom has had a respite package that allows him to go to Cherry Trees approximately once a fortnight. He arrives often on a Sunday morning and stays there until Monday morning when he is taken to school.
The benefits to me as his primary carer are far greater than one might imagine. The relief that comes with not having to remember to feed him, to cajole him into having his feed; not having to ensure that meals cooked include one of the few foods he will eat orally; being able to sleep soundly without one ear listening for the feeding pump’s “beep” or Tom’s cries of pain in his sleep; knowing that there will definitely not be dirty sheets to wash in the morning; not having to keep an eye on his activity level in order to avoid a bad night of pain; not having to constantly monitor sibling activity to avoid injury… all of these daily activities can be suspended for a glorious 24 hours.
Dear husband and I can spend some time together, quietly… a precious thing indeed. Princess Kesia can also have a break from the little brother who does not understand her need for quiet and solitude, not to mention the constant worry about his health that she carries around with her day in day out. We often use these days to do an activity that Tom cannot access – a bike ride in the park, or a craft that he would quickly become frustrated with, or simply a quiet afternoon reading.
In many ways, we turn into a “normal” family on the days which Tom spends at Cherry Trees.
How about Tom?
Recently, he made a few moany comments to our social worker about going to Cherry Trees. These were the very typical moans of an 8 year old who feels he may be missing out on something. She took these comments very seriously, telling us that as “the client”, he must be listened to. Oh the need to wrench my hair out and scream at that remark! In the case of Tom’s respite, I, we, his family are the client, not Tom.
It is extremely important that Tom be comfortable and happy where he goes, not to mention well looked after. BUT the reason for the respite is to allow the rest of the family time and space to regroup and regain the energy needed to look after him well when he comes home. So I maintain that we are the client.
As for the little bratlet that moans!!! It is true that Tom can make a little fuss at the idea of going to Cherry Trees. Anyone who has known our family well for a few years will know that this is directly learned behaviour from Zack who used to access Cherry Trees and fussed at each visit (transitions being difficult for him). Upon arrival, Tom runs to find out which bedroom he will be sleeping in and which member of staff will be looking after him. Within five minutes he is playing happily and frequently cannot be bothered to say goodbye to me!
Days at Cherry Trees are wonderful – the right combination of calm days which often resemble one another intermingled with exciting days out. Tom loves the days out, but also enjoys the simple pleasures of playing in the soft play room, watching a film, playing in the garden or going to the sensory room for some quiet.
He sleeps extremely well – better than at home at times which I’m told is quite frequent (darling children!!) and mostly is given responsibilities which boost his self esteem. Indeed, I often tell people that in the course of 24 hours at Cherry Trees, Tom ages by about 18 months. His whining stops, he takes on chores without moaning and he is more attentive of others.
Cherry Trees is a respite home which looks after children with all sorts of disabilities. They manage to treat each child with huge care and respect and challenge them in small but meaningful ways. Tom is often asked to set or clear the table and helps to strip his bed in the morning. He is allowed to play as he likes, but will be encouraged to help less able children at other times.
And mostly, he comes home happy, often with a little tale to tell and always having had a good day. If he misses his Mummy and bed in the evening I can only think that he is a rather well balanced little boy. A little homesickness seems a small price to pay for the peace and happiness I see in him (and in us) when he has spent the day at Cherry Trees.
Not only do I have to thank social services who provides us with this package, but I have especial thanks to the tireless work put in by the staff at Cherry Trees who tirelessly care for my little boy. They always have a smile for him and us, and never fail to notice if something is not quite right. They take time to listen and hear, and then they act on what they can to change something wrong or at the very least find a kind word to spur us on.
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!
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.
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!
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).
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).
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.