untangling this thing we call life…

Tag Archives: Special education


parking_place

photo by Robert Rickhoff

Special schools are not mere parking places for children who do not fit the mould our educational system seeks to fill.

In fact, language is changing a little. Five years ago, we spoke of special schools. Now, they are known as specialist schools. It’s a tiny change, and then again it’s huge. As words do, the word “special” has become derogatory, and needs updating somewhat. So our children are now more and more referred to as having additional needs rather than special needs. As much as we may resent it, semantics are often more important than we would like.

My son has been in a specialist school for several years now. His teachers, care staff and us as his parents have worked solidly as a team to help him grow and develop. The system has no way of measuring the kinds of progress he was making in all the time that he was refusing to attend classes. So it came as only a slight surprise that Authorities paused before agreeing to fund a similar placement for his post-16 education…

Our young man, however, has been given the time, space and support to grow; to develop his emotional brain without which any learning is simply not possible; to develop life skills that allow him to manage the simple day to day aspects of life that just do not come to him instinctively; to become independent in a way that boosts his self-esteem and gives him the ability to move forward. For the last few years, simply getting out of bed has been a huge challenge for him. He has had to manage some emotional upheavals that have left him bereft and apprehensive at the thought of forming new friendships. He has been hemmed into a national curriculum that did not have the flexibility to allow for that growth, but he was surrounded by teachers who were able to bend things enough to allow him to survive.

Against all odds, he sat four exams at GCSE and passed three… a remarkable achievement given his mental health and his struggles with autism.

In September, he made a fresh start at a new college. No younger, annoying kids. No school grounds – his house is an ordinary suburbian house, a mile away from the teaching building. No uniform. No one-size-fits-all timetable. No adults dictating what he can and should not do. The independence and freedom afforded to him and his peers terrify the Authorities… after all, these are vulnerable young people.

Yet…

My son responds best to those who treat him as an equal, as a human being in full rather than a child who must conform “just because”. And he has found himself surrounded by adults who do just that – they consider him a young adult, and listen to him. In a subtle, gentle way that comes from years of experience, they are able to encourage and guide him with huge respect.

He has been there four weeks. He is happy – happier than I have EVER known him. He is attending classes at least three days a week – an improvement that no one could have predicted. He has made a group of acquaintances with whom he is spending time socialising. He is engaging with his teacher and with the adults on house.

This is success beyond measure. It is likely that there will be hiccups along the way… but we are absolutely on the right path to a young man who will be ready to step into the world as an independent young adult in a few years.

What makes this work is the relationship that we carve with his teachers, the care staff. We speak at least once a week, we email progress reports, concerns, celebrations. We listen to him…  We hear what he has to say and we adjust our expectations, our hopes, our demands accordingly.

So a specialist school is not a parking place. It is a school, or college whose physical environment has been carefully considered with its cohort of young people’s needs in mind. It is a community of teachers and adults who have huge collective experience of  a certain group of young people but who, more than anything else, understand that every single one of their students is an individual who must be treated as such. And it is a community that understands that success can only come when the young person is placed firmly at the centre, and surrounded by a team of parents, educators and carers.

When you bring all those factors together, amazing things can happen. I’ve been fortunate enough to find the right specialist school for each of my three children. I’ve worked hard to help the Authorities see why those schools would lead to the best outcome for them. I’ve worked continuously and very hard to ensure that those placements worked as well as they could. My job as a parent of very special children does not stop when they are at school… but with that collaboration..?

With that collaboration come hope, joy, progress. And every now and again, success.

 



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.



Spring Snowflake (Leucojum vernum

Spring Snowflake (Leucojum vernum (Photo credit: Wikipedia)

 

Eldest is home.

 

And I, and we are happy!

 

There is still an element of surprise at the wonderful, incredible fact that we look forward to seeing him.  Which looks and sounds awful, of course.  You must understand, that there has never been a moment, not a fraction of a fractured second when we did not love him, when my heart did not pull towards him and want to tug him back and envelop him with all the love in the world.  And yet, there was a time even not so long ago when the act of being together, of living with each other brought nothing but pain to us all.  The anticipation of that pain meant that each homecoming from his very special school was a sharp mixture of happiness and deep, deep concern at what might happen.

 

Eldest has Asperger’s syndrome.  He feels profoundly, and each emotion stands alone as it is felt… often unmoderated by other feelings that might in others be present.  He loves deeply, but when he is angry any love he feels is irrelevant.  So although he and I have a very close bond, there have been times (far more than I would like) when anger has been so intense that he has become physically violent – with no restrictions brought on by social taboo.  When a blow is released, the full force of that blow lands.  The same goes for words.  Although he is learning (slowly) that social convention dictates that he must moderate what he says to others and about others, in the heat of frustration or confusion or anger, social convention has no role.  And he has a breathtaking ability to instinctively hone in on his “opponent’s” weak spot, the Achilles heel.  I have always found it fascinating that a child who is so self-oriented and has such inability to put himself into others’ shoes can at such times have a deep knowledge of another…

 

He is a quite wonderful boy.  His brain works in mysterious ways, some of which are remarkable and light up his future with a myriad stars of hope and potential.  There are also a vast number of black holes in there, with the potential to block his stars’ progress.

 

And then there is his quite wonderful school.

 

It took a long time to find a school, and a battle to gain his entry.  All of that is lived in my older blog, The goings-on of my little world and this post is actually not about those dark days.

 

Although…

 

You see, I have a friend.  A wonderful, amazing, inspiring lady that Facebook has given me the privilege of meeting.  Her words of peace and love and acceptance are filled with a wisdom that I feel honoured to witness.  Yet she writes tantalising little things about hope, and seems to find it… frustrating?  Something does not sit well with her when thinking of hope.  I may of course be wrong, and I look forward to reading more of her words, but she has made me think long and hard about hope because it has become something I treasure.

 

I have a very specific relationship with hope, and it began with the dark days, weeks and months before Eldest went to his very special school.

 

It began with a total loss of any hope at all.  I was living at home with a little boy for whom I could see no future.  That is to say, the only paths I could imagine while living with him and trying so so hard to help him were the following.  (And actually it’s really important for me now to separate the last sentence, its subject being my darling boy, from the next because they are no longer linked.)  Suicide, Prison, Homelessness.  My wonderful, special, exhausting little boy was eight years old, and yet these were the only things I could see.  The absence of hope.  Doing the things I had to do in the morning, afternoon and evening, and dreading the following day.

 

Yesterday, Eldest came home for his half term break.  (Well, I went to pick him up, and oh my good golly was the traffic and weather awful… but we got there and back quite safely if tired.)

 

He is now a burgeoning young man of nearly thirteen!!  He smiles again, and every time he does, I see blossoms bursting into the air around him.  He hugs me and his siblings (and his Dad of course), and every time it’s unexpected and as wonderful as the first time he hugged me (on the birth of his little sister – he was nearly two years old).  He (occasionally) accepts our rules, which make family life possible, and that’s very new and takes me by surprise each time.

 

Things are not all good, and his Asperger’s causes real difficulties at times.  But right now, today, on the dawn of his home coming, there is Hope coming along with him.

 

Hope does not have a name, or a face.  I have no idea what lies in his future, but I feel he has a future, where once there was none.  Hope feels like spring, or a waft of air on a hot dry day, or a snowflake on your face.

 

Hope, I suppose, feels like Life.

 



There’s a little tingle in the air, a sense of anticipation.  Anxieties are running a little higher, excitement is too.  It may not all be good, or easy, or straightforward.  It may not all be what we want, but finally after weeks and weeks of waiting, there’s a feeling that soon we will be on the move once more.

Today marks the beginning of the end of the summer holiday.  That vast expanse of time to fill, thanks to cultural and agricultural traditions which no longer bear any relevance to our lives.  For stay at home parents like myself it’s one thing to have the children home and entertain and cook and clean and somehow keep them from tearing each other apart.  For those who work I can only imagine the nightmare of planning that must go into these 6 long weeks.

In a family of children with special needs, the summer holiday can be a terrifying prospect.  None of my children can attend run of the mill summer camps or days out.  Any outing requires meticulous planning and most often is cut short due to the range of difficulties the three of them experience:  one outing may be ideal for little man, but be overwhelming for Princess; another may be perfect for Eldest who desperately needs intense physical exertion, but wear Little Man out before we’ve even started.  A swim was shortened because he became so cold that we simply could not stay.  An outing to the ice rink was too much for Sweet Girl as she contended with noise, movement and failure and began to shut down.

Eldest Zack has Asperger’s syndrome.  His tendency towards obsession is at best rather endearing and quirky, and allows him to delve into certain subjects with remarkably perseverance.  It does, however, take over every single aspect of his (and our) life.  This summer (indeed, this one has been going strong since Easter), the obsession is Minecraft.  Don’t get me wrong, I see a lot of positive aspects of this online building game.  Zack has constructed remarkable structures and demonstrates once more that his spatial perception is creepy good!  But he has spent the last week downloading “mods” and talking of nothing else.  His sense of time is extremely limited and convincing him to come away from the laptop always involves a major battle of wills.

So as time goes by, I begin to hate Minecraft!!  Which he in turns interprets as me hating him… long talks ensue to fix that particularly little problem.  And we find ourselves in a very difficult position trying to allow him to enjoy his holiday whilst not disappearing into a parallel world.  As things stand, with his return to school tomorrow, we have reached that delicate time when a “reboot” is necessary.  He has allowed basics such as personal hygiene to slip somewhat, and anything outside his laptop causes difficulties and outbursts of temper.  How fortunate we are to have the support of such an amazing school which will effect the “reboot” so well.  It does leave me a little sad to think that if the holiday were two weeks shorter, we would not have arrived at this point, and he would be a great deal happier.

Sweet Girl Kesia has had a good holiday and has really benefited from the peace and calm of the last three weeks.  She is now medicated for the anxiety she experiences as part of her Asperger’s syndrome and we hope (oh my giddy aunt if you could see the crossed fingers and toes in this house!!) that this medication will help her.  However, as the time for school to start approaches, the small effect of the medication that we could see have vanished – anxiety is a powerful thing.  She very badly wants to go to school, but simply cannot manage the environment that surrounds her in our lovely but mainstream school.  All our hopes are now pinned on tomorrow’s meeting to address how best to “phase her back in” to this new school year.

Little Man Tom… Oh me oh my.  The facts are abundantly clear that he needs a different school.  He simply cannot keep up, nor does he have the social peer group that would give him a chance of coping with the academic delay he has.  The Authorities see it differently.  The Authorities, I cannot help but feel, are far more interested in their short term budgets than the welfare of the kids they have in their care.  Which actually is a fair point.  Special schools cost a lot of money.  What I wish with all my heart is that these same people would look at the cost in the long term.  Because my children, all of them, have the potential to be valuable and valued members of society.  With the right skills and education, they can and will live independently, get and keep jobs, and generally make themselves useful.

But… let them down now, and each of them in their own different ways could easily end up utterly dependent on their family and the state.

Overall, a special school now will cost less.  Far less.

And that’s not counting the emotional cost of a family in disarray due to children in free fall.

So…

I have spent the last six weeks waiting.  Trying to keep all these little people happy in their holiday, knowing that there was nothing, absolutely nothing that could be done about any of these situations until September.

September is arriving!!!  Battle armour on, smile in place (smiles tend to achieve more than screams), determined stance at the ready.  Phone is working, computer and typing fingers too.  I have some really special people with me and behind me, so here’s hoping!!!

On that note, I have to say an especially huge thank you to Mark Brown from Special Help 4 Special Needs.  Known by many as “the child whisperer”, Mark has help me with all three of my sweethearts, and I would recommend him to anyone whose special needs child needs help.  Not only does he have a phenomenal affinity with these kids, but his experience of the “system” lead him to give sensible and practical help when needed.

In the meantime, Eldest Zack is packed and ready to go back to school tomorrow!  Swett Girl Kesia and Little Man Tom are far more in Limbo, but work starts tomorrow to help them.

I feel good.  And extremely glad to have got to the other end of this ridiculous, 6 week farming time.  Maybe one day we will have the courage to question the validity of doing something just because it’s always been done that way.  That, or I have to send my kids out to farms all summer to be useful!!!



Learn To Love Food

Food Fun For Feeding Therapy and Picky Eaters

Stories with Sam

Stories about our son Sam, his disability, our family and our lives. Sam is 7, loves stories and has cerebral palsy. I am learning to be his ally.

Yvonne Newbold

Doing whatever it takes to make life easier for special needs families and the staff who work with them

Charlie Turtles Shares

Live What You Love With Ease And Fun

Eli Glasman

Site of author Eli Glasman

The Adventures of Fanny P.

...because life is just one big adventure...

Fusteratedreader's Blog

Reading one word at a time

Cross Stitch Bobobitch Mononitch

Translation: One Bohemian Bourgeois Gal with an Urge to Cross Stitch

Ramblings of a KJ

Grant me the serenity to accept the things I can not change; the courage to change the things I can and the wisdom to know the difference.

Cheaper by the Dozen and Get One Free

untangling this thing we call life...

Gluten Free Gobsmacked

...sharing everyday recipes from my gluten free kitchen with a side of life.

Chewy Pickle

Artsy fartsy and completely gluten free!

Durga's Toolbox

embracing special needs parenthood with courage, compassion and joy

Handmade Christmas Project

Spreading holiday cheer one craft at a time

Gold Can Stay

"The golden moments in the stream of life rush past us, and we see nothing but sand; the angels come to visit us, and we only know them when they are gone"--George Eliot

Thoughts

thoughts at teatime...

%d bloggers like this: