untangling this thing we call life…

Monthly Archives: September 2014


I call you on the brink of despair, begging, sobbing at times; or shaking with an anger so fierce you must recoil.

I ask for things I tell you my children are entitled to, and the passion that fills my voice, the knowledge that comes from hours of research, the tenacity that fills your inbox leads you to only one conclusion: I am asking for the world. Or at the very least, a sizeable chunk of the budget you are held responsible for. I ask for my Dream…

And suddenly I am struck with a thought… You must believe my Dream is the dream of a spoiled child with no sense of reality… You must believe I am demanding. A scrounger maybe. Out for something every parent wants, that exists only for the elite few with the funds to provide it. You have told me often enough that “the law allows for every child to have an education appropriate to his needs, Mrs S. That does not mean a Rolls Royce education”. Because as much as we would all want that, a state funded education cannot be a Rolls Royce education unless we are all willing to pay substantially higher taxes.

I have always been struck dumb by this statement. And it came to me today that the problem comes from a staggering disparity between what my expectations are, and what you fear them to be. (My expectations are surprisingly common amongst my friends and all the other “Special Parents” I have had the fortune to meet.)

Welcome to my world, my family. Welcome to my children, my aspirations and my expectations. Welcome to my Dream.

Let’s begin with a little boy, aged 6 a while ago, recently diagnosed with Aspeger’s syndrome. I want my little boy to experience more than one day every few weeks during which he does not feel so desperate, so afraid, so lost that he begs me to kill him. I know that his intellect is astounding, that a “normal” parent would be wishing for that private education that offers small classes, top of the range equipment, exam tuition. That normal parent would be expecting great things, scholarships, university and the sky.

Let me tell you of my aspirations for that Boy, and my expectations.

I hope that he finds some inner peace. I hope that he finds himself able to pursue an activity that gives him a sense of satisfaction. I hope that he is able to live independently.

I expect that he will attend a school staffed with people who understand the complexities of his “condition”. I expect that he will be emotionally and physically safe primarily, and that he will have access to academic education that will allow him (if he allows himself) to learn and progress intellectually. That. Is. It. The sum total of my expectations.

Secondly, we’ll find a little girl. Emotionally so vulnerable due to her childhood circumstance on top of Asperger’s syndrome that she spent the entirety of her junior schooling (aged 7 – 11) in a state of almost constant panic. Once again, exceedingly bright and able, willing to please and to learn. The “normal” parent has her education all planned out: tutoring and scholarships, early exams no doubt. Extra-curricular activities include gymnastics (she was chosen for an exclusive group due to talent), swimming, music. Her all round ability stuns that normal parent so much that the sky itself cannot limit her.

So here are my hopes and dreams, my aspirations for this amazing Girl:

I hope that she learns to tolerate the world. I hope that she allows herself to be loved. I hope that she finds a little corner of the world to call her own, and something to do that will give her a sense of accomplishment.

I expect that she will be able to go to school and be emotionally and mentally safe. I expect that she will not be in “fight or flight” mode every single day of her school life. I expect that her particular brand of autism will be understood and that her teachers will know to give her time to express herself. I expect that the educational system will allow for her to take some exams early, and some late to allow the time and space she will need to achieve. That will do… very nicely.

And then lastly, we have the Little Man. He has a range of medical problems, some moderate learning difficulty and his social isolation caused by being different has made him very fragile emotionally. My “normal” couterpart would have seen this little boy in all the drama clubs, sports groups (I’m removing the physical complications here), parties galore. He is the clown of the group, loved by all and entertainer extraodinaire. I’m out… this little boy’s history is such that a future was never dreamed of, and so every day, every year is a rather miraculous bonus.

But here we go… here are my dreams for him:

I hope that he is well enough to live, and enjoy living. I hope that he is well enough one day to live independently. I hope that he will have friends.

I expect that when I send him to school in the morning, I can be sure that any medical emergency will see him as safe as possible. I expect that he will be looked after by the adults at school, and that he not be the expert in his own medical care. I expect that his schooling take into account his physical problems. I expect that the staff at his school be in regular contact with me so that we can ensure his long term health. I expect him to have “peers” at school… a group, however small, of children with whom he has enough in common to forge relationships.

I do not believe that I have described Rolls Royce education in the way you describe. I believe that I have describe some basic conditions that we often colloquially refer to as human rights. I believe that I have asked that each of my children:

  • Be physically safe while at school
  • Be emotionally safe while at school
  • Be able to learn within his or her intellectual, physical and emotional ability

Do not be afraid of my passion, my despair, my anger. They stem from my heartache at seeing children flounder much as fish do out of water. They stem from my feeling that as loud as I shout, as deep a river I fill with my tears, as much knowledge and evidence I provide you with, you do not hear, you do not care, you do not acknowledge. They stem from the knowledge that as simple as my Dream may be, it seems as far from me as Fantasy.

Please show me that my feeling is wrong. Show me that you hear, show me that you care, show me that you have read that evidence, that you acknowledge that I know many things about these particular children that you cannot because you have not lived with them.

My expectations are not those you fear…

My dreams are far, far simpler than you may think…

Please… be my Dream Catcher and let us, together, make those Dreams a Reality…

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You work in a department whose whole purpose is to deal with us… the problems.

Your boss no doubt often reminds you that you are working with a limited budget – as we all are, and then you pick up the phone, or open your email, and there WE are… there I am.

Telling you that you must address my concerns. Reminding you that our country gives rights to my children and that you are charged with ensuring those rights are met. Begging you to listen, to help because I am at breaking point… again.

And you work in an office where everyone is in the same situation. You are all dealing, day in, day out, with a problem: children who cannot get through childhood without a great deal of extra help.

I like to think that you arrived in this office glowing with hope and ambition to make the world a better place. You might even have known a child like one of mine, you might have seen the difference a good decision can make, or the destruction a wrong decision wreaks. I like to think that you come to work each day hoping to make a family like mine breathe just a little easier.

But day after day, you come to work and you deal with the problems. And there are simply too many of us, aren’t there? That limited budget combined with systems and processes old as time forces you and I to be on different and opposing teams. I have become the person who will steal some of that tiny budget you have, and you have come to think you must protect that budget at all costs. You have become the next hurdle in my quest to help my child be safe and grow.

I’ve been thinking that you see too little success, because you do not truly understand the nature of failure and success for children and families such as mine. How hard it must be to go into work each day, be ground down from above and pulled down from below, and in the end feel that any difference you can make is insignificant.

Let me tell you the picture I hope for…

In my picture, we talk, you and I, as equals. We put my child’s photograph on the table, and we talk about the achievements I have seen that week, that month, that year. We can do that, because we both know the problems he or she faces, and we both acknowledge them. If there are no achievements to talk about, that right there tells us that there is something we must change.

In my picture, you listen to me because I am an expert. I have raised this child since he or she was born, and I have navigated the challenges he or she faces from the beginning. In my desperation and heartbreak, I have learned to research, to ask questions, to learn and learn, and learn again. I have learned the facts, but I have also learned to communicate them to you, to doctors, to teachers, to social workers. I am an expert because I am my child’s voice. I am an expert because I am emotionally invested. I am fiercely protective of this child because he or she is far more vulnerable than others of his or her age. I am fiercely protective of him or her because without that fierce protection, he or she cannot survive. And in my picture, you know that this fierce protection is far from a problem… it is a strength, and it makes me your best partner. Because I am an expert, you know that if I am anxious, there is cause and so you listen.

In my picture, I listen to you when you talk about budget. Because in my picture, you teach me how much each service costs. You tell me what each pound will buy, and you tell me what money you have available. And in my picture we whittle down what is needed and what money is available and we find a solution. Remember, I work with a budget every day… I do not work because I cannot work… because my children’s needs are such that it is impossible. So I know what a budget is, and I know all too well that you also have a budget.

In my picture we talk about the big picture… how will our decisions impact on this child’s life as a whole? If we can agree to “x” help for five years, will this child be able to live independently? If so, this saves untold amounts of money in benefits and care for a whole life. And for some of these children, the reality is that their contributions to our economy and tax system will allow you to care for those children who will need life long care…

In my picture, you listen to me because you know that my drive to find the right solution is greater than yours- that means I do your homework!!!

I know I am your problem. And I know that there are many of us, and that your work must seem like an insurmountable mountain. But I believe strongly that if we listen to each other, if we talk…we can work together, with respect and kindness, and find the way to help these children in such a way that they cease being simply a problem.



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