Chineme's Blog

I trust that everyone had a peaceful Christmas and is looking forward to the new year.

A friend of mine sent me this link of a young woman speaking about the dangers of seeing things from just one perspective. It reminded me of the importance of telling one's story even when it may appear that there is not much interest because, at the very least, it will provide some much needed perspective for anyone who comes across it.

It's about 18 minutes long but very inspirational - a true Braveheart Woman:

http://www.ted.com/talks/chimamanda_adichie_the_danger_of_a_single_story.html

Best,

Chineme

We have now returned from my father's burial and I feel that I can now move on, bouyed by the thought of closure and renewal as I move on in what for me is a new and changed world.

My Dad's burial was extremely emotional and phenomenally spectacular! The proceedings ran over 3 days - the procession with Daddy in his casket, the ceremonies - both christian and traditional, culminating in the physical burial, and then the celebration procession which saw us walking many miles through the various villages acknowledging the love and condolences from, what seemed to me, everyone in the entire State! What a way to go - my Dad was clearly much loved and has left a wonderful legacy. He would have loved every minute of it.

There was a hilarious episode while my Dad was being buried where I was sobbing uncontrollably, and then the lead digger stopped proceedings with a flourish of his spade and demanded that a crate of guinness and a bottle of gin be secured immediately, lest Daddy got thirsty! It was absolutely bizarre and left me laughing uncontrollably through my tears! Just the type of thing Daddy would have done!

It was surreal and fabulous and wonderful and I am so grateful that Amadi and I were there to say goodbye in that very public, spectacular way.

And now on with the rest of my life, without him.

Much love,

Chineme

Hi all,

Cathy Anthony has written a wonderful sequel to 'Welcome to Holland'
--------------------------------------- ----------------------------

Celebrating Holland- I'm Home
By Cathy Anthony

(her follow-up to the original \Welcome to Holland\ by Emily Perl Kingsley)


I have been in Holland for over a decade now. It has become home. I have had time to catch my breath, to settle and adjust, to accept something different than I'd planned. I reflect back on those years of past when I had first landed in Holland. I remember clearly my shock, my fear, my anger, the pain and uncertainty. In those first few years, I tried to get back to Italy as planned, but Holland was where I was to stay. Today, I can say how far I have come on this unexpected journey. I have learned so much more. But, this too has been a journey of time.

I worked hard. I bought new guidebooks. I learned a new language and I slowly found my way around this new land. I have met others whose plans had changed like mine, and who could share my experience. We supported one another and some have become very special friends.

Some of these fellow travelers had been in Holland longer than I and were seasoned guides, assisting me along the way. Many have encouraged me. Many have taught me to open my eyes to the wonder and gifts to behold in this new land. I have discovered a community of caring. Holland wasn't so bad.

I think that Holland is used to wayward travelers like me and grew to become a land of hospitality, reaching out to welcome, to assist and to support newcomers like me in this new land. Over the years, I've wondered what life would have been like if I'd landed in Italy as planned. Would life have been easier? Would it have been as rewarding? Would I have learned some of the important lessons I hold today?

Sure, this journey has been more challenging and at times I would (and still do) stomp my feet and cry out in frustration and protest. And, yes, Holland is slower paced than Italy and less flashy than Italy, but this too has been an unexpected gift. I have learned to slow down in ways too and look closer at things, with a new appreciation for the remarkable beauty of Holland with its tulips, windmills and Rembrandts.

I have come to love Holland and call it Home.

I have become a world traveler and discovered that it doesn't matter where you land. What's more important is what you make of your journey and how you see and enjoy the very special, the very lovely, things that Holland, or any land, has to offer.

Yes, over a decade ago I landed in a place I hadn't planned. Yet I am thankful, for this destination has been richer than I could have imagined!

***

Cathy Anthony is a parent, advocate and presently the executive director of the Family Support Institute in Vancouver, BC (www.vcn.bc.ca/bcacl/fsi.htm).

***

Yes, indeed.

Chineme x

I said I'd post 'Welcome to Holland', and here it is. There is an update which I will post once I've located it.

WELCOME TO HOLLAND
by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

*****

Update on this to follow.

C x

Sisters, another mother sent this to me and I thought I would share it with all of you...

Sisters

Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores.

I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience…experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."

Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.

We were initiated in neurologists' offices and NICU units, in
obstetricians' offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.

All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our
children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever
materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, and "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, nephrology, endocrinology, and psychiatry.

We have taken on our insurance companies and school boards to get what our children need to survive and to flourish. We have prevailed upon the state to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have laboured to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us on line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.

We have our own personal copies of Emily Perl Kingsley's "Welcome To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours.

We have coped with holidays. We have found ways to get our physically handicapped children to the neighbours' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it.

We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.

But we sisters keep the faith always. We never stop believing.
Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolours, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.

*****

'Welcome to Holland' to follow.

My Braveheart sisters,

Following on from the first tribunal hearing last Wednesday, the actions of Amadi's school (or rather individuals within it) have been absolutely despicable.

Amadi showed signs of distress on Thursday and I complained to one of the Deputy Heads about Amadi alleging being glared at and shouted at by the Special Educational Needs Coordinator/ Inclusion Consultant (SENCO). On the Friday morning I spoke to Amadi's class teacher and asked him to keep an eye on her.

When I collected her later that day I could see that Amadi was anxious and she again made allegations about the same woman who is also a deputy head.

I complained in writing to the Head Teacher and was told that the allegations were "spurious" but no mention was made of Amadi's demeanour.

I took Amadi to school on Monday morning and felt very uneasy about leaving her there as it felt distinctly hostile to me - her class teacher was no longer receptive to me speaking with him. Against my better judgment, I left Amadi at school.

I requested from the Head Teacher a copy of the school's complaints procedure as nothing that I had said or written to them appeared to be taken seriously. I received a message back that staff at the school had been "directed" to conduct "an investigation" with Amadi and they are satisfied that she was lying. At no time was I informed of such an investigation.

I wrote back to the Head Teacher requesting details of what this "investigation" entailed, the individuals involved and the questions put to, and answered by, Amadi. You may recall that Amadi has cognitive deficiencies and is easily led. I also informed the Head Teacher that I will not be taking Amadi back to the school until their actions have been fully looked into by the LEA (which has been copied into all of the communications but has not been in contact with me at all).

I informed the Head Teacher that I was happy to attend a meeting with her but only if I was accompanied by someone else - I too have been accused of lying by the leadership team.

All I have ever wanted is for my daughter to learn how to read. They cannot teach her and so I identified somewhere that could. The official at SENAS with whom I was previously dealing told me during a face to face meeting (including the SENCO and the Director of the learning centre) that, "Reading's not important, she (Amadi) could do other things." This for me sums up the attitude of the LEA and the school generally.

So I applied to the tribunal and they have all turned hostile - against me and against my cognitively challenged child. Amadi informs me that she was crying during the "investigation". This does not surprise me as she must have been terrified. From what I could make out there were three adults interrogating her. I have received no further response from the Head Teacher. I have contacted my doctor to arrange some counselling sessions for Amadi.

What to do? I will be writing to the Secretary of State for Education and Skills as the last port of call in the complaints procedure but, as usual, I feel terribly alone. Since we are now in the legal arena, I have been copying all correspondence to the tribunal to be placed on Amadi's case file.

Who would have thought that requesting an appropriate education for Amadi would have ended up with me pulling her out of school altogether?

Rather than looking at how Amadi processes information and deal with that, her educators have become very defensive and appear to be taking their feelings out on her.

This is totally unacceptable. I will ensure that Amadi gets some home schooling while the school officials sort themselves out.

We're due to travel to Nigeria for my Dad's formal burial in a couple of weeks. When we return in early December we will need to conclude the tribunal proceedings. Hopefully, by then the school will have considered the error of their ways.

Feel the fear and do it anyway? You betcha!

Much love,

Chineme

My Braveheart Sisters,

The hearing on Wednesday went fantastically well! It's not over - it had to be adjourned because there simply wasn't enough time to go through all of the issues. Thankfully, the chair, although she seemed a bit non-committal at the beginning, by the end of the afternoon was really interested in what I had to say about the way that Amadi processes information and the way she needs to be taught!

Plus, I took Amadi along and they had a chat with her first before I asked her some questions about school and LMB. She was a bit scared because the SENCO (the school's Special Educational Needs Coordinator, who shouts at Amadi when she gets things wrong) was in the room, but Amadi was brilliant and it was abundantly clear that she was telling the truth. She then had to leave the room as it was inappropriate to continue with her there.

They adjourned the hearing so that they could read through the research material thoroughly! They also ordered the school/LEA to produce a full report about how they have been dealing with Amadi in school and why none of the behaviours that the school accused Amadi of at the tribunal did not feature in any way in her Statement (IEP - individualised education plan), along with how they intended to deal with it currently and in the future!

I got across that any bad behaviour (which they vastly exaggerated) was due solely to Amadi's frustration at not being able to access the curriculum - and the panel nodded in agreement!

The school SENCO totally amazed me in the way that she totally LIED through her teeth the whole way through. It was sickening. But she got caught out many times when I referred the tribunal to written evidence which disproved what she was saying! I felt embarrassed for her. Their barrister (counsel) didn't say a word! I came out feeling so happy with the way things had gone, but we will resume in early December and there is still a long way to go.

With about 20 minutes left, I asked if it would be helpful for the Director from LMB (the learning centre that I want Amadi to attend in the mornings) to go over their processes and explain Amadi's time there. They said that 20 mins would not be long enough as they wanted to hear everything in detail! I know I still have the costs issue to deal with but I have case law covering that.

This is all very exciting and of course has to be fully argued at tribunal in December, but I'm confident of my ground and will be ready to appeal if the tribunal rule against me on any of it. I already had to put them right about one area yesterday. The Chair was adamant that I was wrong about an area of law and so I produced a Court of Appeal decision (against a previous tribunal decision) which proved that I was right! She wasn't too happy about that but I had to get it noted so that it would also be a ground of appeal if necessary. Thereafter, everything went swimmingly well for us.

All in all, a very good day for Amadi and me, and absolutely disastrous for the school and the LEA!

***

Moving on from that though, when I collected Amadi from school yesterday, she told me that the SENCO (who was lying throughout the hearing) was being nasty to her. Amadi saw her and said hello as she normally does. The SENCO glared at her and shouted, " Leave me alone!" in a very aggressive manner and spun away from her. This left Amadi feeling afraid and vulnerable.

It must be said that the night before, after the hearing, I had to console Amadi who could not sleep because she was afraid of repercussions from the SENCO after the tribunal proceedings. I reassured her that she will just be doing her job and everything would be ok. How wrong I was. Clearly, Amadi knows a lot more than I do.

I made it abundantly clear in writing that if anything like this, or anything untoward that makes Amadi feel anxious and insecure, occurs again in the future, I will be taking further, formal action. I told them that this kind of behaviour is totally unacceptable for any teacher to a child with special needs, let alone the SENCO or Inclusion Consultant whom also happens to be a deputy head at the school.

I copied the message to all involved in the proceedings and to the tribunal to be kept on Amadi's case file. I really have had enough of that woman's despicable behaviour - due simply because I am trying to ensure that Amadi learns to read. It will be interesting indeed to see what will happen next.

I'll keep you all updated. Exciting times!

Much love,

Chineme x

Hi Braveheart sisters,

Since returning from the awesome Rise event I've been on a roller-coaster ride preparing for our court hearing on Wednesday.

You may recall that I made the decision to go to tribunal (due process) since neither the local education authority nor Amadi's school were prepared to provide her with what she needs for an appropriate education.

After submitting my appeal papers, they have gone all out to defend their actions. They have engaged Counsel (a barrister here) to present their case. They have engaged the district's Educational Psychologist, their Special Educational Needs Consultant and the School's Special Educational Needs Co-ordinator (so called!) to be their witnesses against us.

It's quite unbelievable that they are prepared to throw so much money at resisting my attempts to secure an appropriate education for Amadi, my daughter, but deem it an inefficient use of their resources to educate her!

Anyway, I'm ready to go up against them all. It will be the might of their resources against Amadi and me. I'm confident that I have right on my side and will do the best that I can.

Should the tribunal rule against us, I will be appealing to a higher and higher court until we receive justice. The way I see it, the law is clear and is on our side - I just have to demonstrate this to all concerned!

I know they do not want me to get the much needed precedent in our case because it will force districts to do what they are actually supposed to do for many, many children for whom they currently do not cater appropriately. I intend for Amadi's case to be a catalyst for change.

It's gone 3am here and I continue to prepare - less than 2 days to go but I will ensure a good night's sleep tomorrow (or tonight!).

Apologies for all those whom have no idea of what I'm talking about - all will be explained after the case on Wednesday.

Oxytocin hugs to all and very, very deep breathing for me!

Until next time.

Chineme x

PS Your positive energy will be much appreciated!

This is an ode to my Dad who passed yesterday, 7th September, 2009, aged 83 years and 28 days:

You raised us up in such difficult circumstances.

You encouraged us and made us believe that all of our dreams were possible.

You showed us, by example, how to do well, aim high and never give up.

You made us feel safe and secure when, I grew to know, times were so very hard.

You protected us when we felt vulnerable.

You did your very best when, as I grew to know, you were acting alone.

You made us know in our souls that the world was our oyster.

You instilled in us an unshakeable belief in ourselves.

You provided Amadi and me with the love, support and encouragement that only my Daddy knew how.

You gave me hope when it seemed that none was left.

You were my beacon of light in a sometimes harsh and unfriendly world.

You were full of knowledge and inspiration which you gladly imparted.

You lifted me up when I felt as though circumstances and situations had let me down.

You held on until your only son arrived to be with you so he could say goodbye, in person, from all of us.

I know in my heart that you managed to do this to ensure that our grief would be somehow bearable.

Thank you, Daddy. You were, you are and will always be, my hero.

"Chi girl"

My dear Braveheart sisters,

My Dad took ill a couple of weeks ago and by the conversations I was having with my cousin (my Dad's brother's daughter) who lives with him in Nigeria, I knew things were really bad.

After a couple of days and sleepless nights I just knew that prayers alone would not be enough.
Something needed to be done to lift his spirits to give him a fighting chance.

I was speaking to him just the week before and he was his usual ebulient, jolly self and we had a good laugh on the phone as we usually do.

Knowing this and hearing that he was now so very ill that he cannot even speak on the phone suggested to me a stroke of some kind - he had a mild stroke about 10 years ago and recovered well from it.

I would ordinarily have booked a flight for Amadi and me immediately but on this very important, crucial occasion I simply could not.

My brother agreed to travel and we managed somehow to get together the necessary funds and my brother was in Nigeria within days. I got a distraught call from my brother when he saw our Dad's condition. I consoled and talked him through his evident shock as he would now need to be strong for Daddy whom, he told me, showed visible signs of pleasure when he realised that his only son was there with him.

We've been corresponding constantly and he informs me that Daddy has made some improvement. My cousin tells me that his legs are now warm when previously they were cold.

My family here have just seen the usual stoic Chi who organises things and ensures focus at the task at hand. It is two of my best friends whom have been there for me to talk with in the dead of night when my helplessness could very well have otherwise overwhelmed me

We last visited Daddy in 2006 on his 80th birthday and had such a fantastic party where the whole village joined in! Amadi still talks about it as though it was yesterday.

My Dad. My hero. Daddy is not going to be defeated lightly. Just as he ensured we would not be.

Please, Braveheart sisters, join me in sending my Daddy love, light and positive thoughts that he may recover from this illness speedily.

I'm going to post some photos as soon as I've worked out how to scan and upload them.

Much love,

Chineme

On with Amadi's story:

The meeting with our local education authority's special educational needs service had been scheduled for after the Christmas break. The next day I was chatting to a lady whom I had presumed was the mother of one of the centre's attendees and she told me that she was not the girls' mother but was her school one-to-one learning support assistant!

I enquired as to how she came to be accompanying the young girl and was informed that their London local education authority's SENAS was funding her attendance at the centre and, as the young girls' school support, she was deemed the best one to accompany her to the centre. What a difference a borough makes!

On further enquiry however, it appears that their authority's SENAS was also initially against the idea of the pupil attending the learning centre but her school Head teacher, Deputy Head and their SENCO supported the placement fully and even attended the meetings with their SENAS to argue for the pupils’ attendance there. The support assistant told of how the school video recorded the meeting so that there was a permanent record of what was said and done. Wow!

How refreshing to know that there are schools out there who do understand the importance of the cognitive-sensory function in the process of learning and are actually willing to stand up against their education authorities in full support of individual pupils. I consider that such support would be invaluable for the parents whom often have to go through the grueling processes alone, against the might of their borough councils.

It must be said that Amadi's Head teacher provided me with support privately; but to have the school also put their considerable weight directly behind the requests to SENAS would have been a fantastic addition to my parental pleadings.

Encouraged by the slightest possibility that Amadi's school may agree to also attend the scheduled meeting with SENAS, I thought it couldn't hurt to ask them. However, that day happened to be the last day of the school term before the Christmas break and so I had to wait for over two weeks before I could get a definitive answer to messages I had left on the SENCO’s voicemail and emails that I had sent to her and the Head teacher.

And so I waited, and waited. I knew that in the past the Head teacher had read and responded to email out of school hours but given that it was the Christmas and New Year break, she may have been away or simply taking a well deserved rest from the day job.

For me however, it was the longest two and a half weeks because I felt as though I was in limbo. I began to fear that I no longer had the support of the school and, even worse, Amadi may no longer have a place there. The Head teacher had previously assured me that Amadi would have her place at the school for as long as we wanted it but I imagined that perhaps they were now fed up with Amadi's non-attendance and my continued pleas for their support in the quest for Amadi's learning.

I grew increasingly paranoid about what the reasons for this non-communication could be. I was used to having the SENCO not respond to my communications but the Head teacher would normally respond as soon as she was able.

I imagine these kinds of emotional turmoil and near paranoia are probably quite common in parents going through similar issues to my own. It is a state of being that other 'ordinary' families could never imagine experiencing. It is a state of being that I never imagined I would be experiencing when I gave birth to my beautiful, precious daughter. Especially in a country where there is compulsory state education and a welfare system which is meant to cater for those outside of the norm.

But here I was, totally alone in my thoughts, considerations and deliberations. My daughter was to have her new-found magic of learning snatched away from her. She was to return to the system that had totally failed her so that it could continue to fail her. And there was nothing that I could do for her at that time.

I'm taking this from a post on the Williams Syndrome listserve.

Love, Chineme:


Posted on MassFV:
I didn't write this, but saw it and found it to relate to all of us in our
dealings with the schools and even our own families at times


Where Are the Parents?
By Sue Stuyvesant, Parent

Hey everyone. For those of you who don't know me (I'm only an occasional
poster) I am mom to Michelle, 9 years old, microcephalic,
athetoid/spastic CP, cortical visual impairment, seizure disorder -- and
CUTE! OK, now for the reason I'm posting.

To make a long story short, earlier this week a question was asked by
some nitwit official as to why there weren't more parents (of special
needs kids) involved in the local PTA and other issues that have come up
that directly involve our kids. His question, which was passed on to me
was, "Where are the parents?" I went home that night, started thinking -
and boy was I pi**ed - and banged this "little" essay out the next day
on my lunch break. By the way, I took copies of this to the school board
meeting that night, gave it to a couple of influential people and it
WILL get around...... .......

Where are the parents?

They are on the phone to doctors and hospitals and fighting with
insurance companies, wading through the red tape in order that their
child's medical needs can be properly addressed. They are buried under a
mountain of paperwork and medical bills, trying to make sense of a
system that seems designed to confuse and intimidate all but the very
savvy.

Where are the parents?

They are at home, diapering their 15 year old son, or trying to lift
their 100 lb. daughter onto the toilet. They are spending an hour at
each meal to feed a child who cannot chew, or laboriously and carefully
feeding their child through a g-tube. They are administering
medications, changing catheters and switching oxygen tanks.

Where ar
e the parents?

They are sitting, bleary eyed and exhausted, in hospital emergency
rooms, waiting for tests results to come back and wondering, "Is this
the time when my child doesn't pull through?" They are sitting patiently
in hospital rooms as their child recovers from yet another surgery to
lengthen hamstrings or straighten backs or repair a faulty internal
organ. They are waiting in long lines in county clinics because no
insurance company will touch their child.

Where are the parents?

They are sleeping in shifts because their child won't sleep more than 2
or 3 hours a night, and must constantly be watched, lest he do himself,
or another member of the family, harm. They are sitting at home with
their child because family and friends are either too intimidated or too
unwilling to help with child care and the state agencies that are
designed to help are suffering cut backs of their own.

Where are the parents?

They are trying to spend time with their non-disabled children, as they
try to make up for the extra time and effort that is critical to keeping
their disabled child alive. They are struggling to keep a marriage
together, because adversity does not always bring you closer. They are
working 2 and sometime 3 jobs in order to keep up with the extra
expenses. And sometimes they are a single parent struggling to do it all
by themselves.

Where are the parents?

They are trying to survive in a society that pays lip service to helping
those in need, as long as it doesn't cost them anything. They are trying
to patch their broken dreams together so that they might have some sort
of normal life for their children and their families.

They are busy, trying to survive!

Sue Stuyvesant 10/15/96: Permission to duplicate or distribute this
document is granted with the provision that the document remains intact.

Hi all,

Recalling Amadi's journey reminds me of how tempestuous our path has been! My, oh my! But, as Booker T. Washington so aptly stated, "Success is to be measured not so much by the position that one has reached in life as by the obstacles which he has overcome." Yes, indeed.

On with Amadi's story...

I recalled reading a newspaper column of a journalist who had a daughter with Down's syndrome. From my recollection his daughter did not have any difficulties with reading but I hoped that he would have some empathy with my position as a parent with a daughter who had a congenital abnormality.

I proceeded to write to him, detailing my and Amadi's situation, in the hope that he would agree to write about what we were going through. I prayed that such an article would raise awareness of the problems we and countless other families faced. I also hoped that such widespread press coverage would uncover details of education lawyers with experience of the issues over which we would undoubtedly very shortly need to litigate.

I sent the letter by email very early on a Saturday morning after yet another sleepless night and hoped that he might check his work emails over the weekend. Having heard nothing by the Monday I assumed he had not checked his inbox and would surely respond within the next couple of days.

Meanwhile, I toyed with the idea of sending out a general press release and see which, if any, of the national and local press would be interested enough to pick up the story.

Then I had a period of reflection.

I had been so knocked back by SENAS's decision to pull the plug on Amadi's learning that I think I must have slipped into panic mode. I was exhausted through worry and lack of sleep and, without the funds to take direct and immediate legal action against the decision, I felt I needed to get the word out some how - any how.

I discussed the situation with other mothers of children whom attended the learning centre and they provided details of other journalists with an education brief with whom I could get into contact.

We also toyed with the possibility of meeting with SENAS, along with the centre Director so that they could benefit from a more in-depth understanding of how and what Amadi was being taught there. It was agreed that it was worth a shot although I remained skeptical.

As soon as we returned home that evening I wrote to my contact at SENAS requesting such a meeting. I asked that they refrain from pulling the plug just yet so that a more realistic cost/benefit review could be undertaken with staff from the centre whom had met with Amadi prior to starting the programme, could comment on the progress she had made and provide an experienced projection of how much longer would be realistic for Amadi to continue before she could be said to be able to read at a level where she would be able to access, on at least a basic level, what her classmates were being taught in school.

I emphasised that stopping the programme and sending Amadi back to school would be a thoroughly fruitless exercise - she did not yet know enough to be able to grasp any reading matter being discussed in the classroom and it would in effect have been a total waste of everyone's time and resources for the past couple of months. Not to mention the effect on Amadi - now and into the future.

I also stated that we had a legitimate expectation that they would at least follow the recommendations as set out in the initial diagnostic report - the report which they stated gave rise to them changing their minds about Amadi attending the centre in the first place. I pondered whether they could not use the opportunity to consider sending some of the borough's teachers to be trained in the learning processes at the centre so that they could then take that knowledge back and utilise it within the schools to benefit so many other children who required such processes in order to be able to learn.

I sent the letter and waited. I also decided to copy the letter to the Director of Education to ensure that there could be no misunderstandings at all about what I was requesting , i.e. at least a chance to explain further the processes involved in the programme (should the matter ultimately end up in the press or, indeed, the courts).

Later that afternoon I received their response. To my relief, they had agreed to the meeting! They had provided a list of alternative dates as I had requested and I immediately passed these on to the centre for their Director to choose one that was convenient for her and then sent back my confirmation of the agreed meeting date and time.

Until next time...

Love, Chineme

Amadi and I have had a few weeks of rest and relaxation and some pure, unadultared fun! It is the summer recess and now that most of the hard graft for our court case has been done, I felt we needed to just be.

Amadi has now gone off to her play centre while I concentrate on getting some money in and spending lots of lovely time connecting with my Braveheart sisters.

Now, back to where I left off with Amadi's story - a particularly difficult time for me emotionally...

On the last day of Amadi's seventh week at the centre I received an email from SENAS confirming that they would no longer fund Amadi's learning. I had requested that she be allowed to continue at the centre for just two hours a day to build on what had already been achieved to ensure her learning to read was continued.

They had flatly refused this on the same grounds as before - that they did not consider it an efficient use of resources to provide Amadi with an education that was appropriate for her particular needs. To add insult to injury, they then stated that they would again "consult" with Amadi's school and the 'special school' that was mentioned some time ago which was shown not to be able to provide Amadi with an appropriate education. It will be recalled that this school actually had a young girl with Williams Syndrome attend their environs for over five years. She left there not being able to read.

My emotions at that point are very difficult to explain. I had not really expected anything better of this local education authority's Special Educational Needs and Assessment Service, but given Amadi's journey and the enormous amount of correspondence, reports and evidence that they had been provided with over the years, would it not have been possible for them to actually do some research to see whether they could find an establishment that could provide my daughter with an appropriate education?

I had found one such institution and had given them the information. They had allowed her to begin her initial learning there in accordance with the diagnostic evaluation but then decided to pull the rug from under her feet to send her back to a place where she can continue to fail as before.

I felt frustrated. I felt extremely let down. I felt terribly alone. I felt exasperated. That morning I looked at my little angel who had only just discovered the magic of learning and tears welled up in my eyes. I quickly dropped Amadi off at the learning centre and then completely broke down.

I sobbed and sobbed and sobbed as if just the act of me physically vibrating would somehow shake away the injustice of it all. I eventually stopped sobbing and looked into the distance through my car window. I saw a lady with some young children in red and grey uniforms as they skipped happily down the street. I imagined that they must be on their way to school.

I wondered whether her children had ever had an issue with their reading. I wondered how it must feel to just be able to take your child to school and not have to worry about whether they will ever be taught how to read and write? I thought again about the law - my child, as well as those children down the road, is entitled to an appropriate education. I imagined that those children were getting an education appropriate to their needs. Why was it that my child was being denied an education appropriate to her needs?

The law states that the appropriate provision could be sought in a school or other institution or indeed, abroad! Why is it then that this SENAS deems it an inefficient use of resources to fund a placement at a learning centre for just two hours a day for a defined period to ensure the appropriate provision of an education for my daughter? Indeed, to ensure that she learns the most fundamental tenet of any education, i.e. how to read?

My daughter is the only child in her school with her particular condition and SENAS inform me that there are only four children with WS in the entire borough. It is clear that SENAS have not made the same type of provision before. I was at a loss as to where next to turn.

I was on the brink of bankruptcy, not being able to run my home business effectively for some time. I knew the matter would need to go before the courts but there was a further financial burden to be considered with that.

I needed to do something more immediate - Amadi had just a couple more weeks left at the centre before the local education authority pulled the plug. I turned my considerations to the national press.

Until next time..

Love, Chineme

Hi all,

Today I'm posting someone else's article as I loved it so much - is that cheating? No matter, here it is:

Love Chineme

***

"A child can always teach an adult three things: to be happy for no reason, to always be busy with something, and to know how to demand with all his might that which he desires." - Paulo Coelho
Colleen, was at a workshop where the instructor was preparing to leave for a week-long trip to Italy. Someone else in the class said, "You are so spoiled to get to go there." And Colleen replied, "No. She is not spoiled: she is creating and living her dream - manifesting it."

If you're like me you probably heard some envy behind the "spoiled" remark. I interpreted it to mean that this classmate wished shecould be on her way to a really cool trip to Italy.

I mean, who wouldn't?

Of course, I know that "envy" has a negative connotation. But it doesn't have to be that way. Instead, we should learn to embrace envy - to pay attention to it as a strong signal from our deepest selves. Envy is simply desire clouded by the belief that we can't have what we want.


But we can have it. If we think of envy as a gift we haven't opened yet, we can learn to open it and see the thing we really want.

Back in February 2001, I wrote in my journal that I envied someone with whom I worked. She had spent years of her life working as a medical missionary in Haiti and I envied the circumstances that seemed to make the travel and service possible for her.

At the time I thought that a medical mission would be impossible for me because it would be irresponsible to leave my good job- with no guarantee that another job would be waiting for me when I got back - to do volunteer work in another country.

But then I had an epiphany: The envy I felt for my colleague helped me focus my desire on living and working abroad. I decided to commit to my dream, and as you know from my last article, providence moved and supported me every step of the way.

What I learned is that envy is a form of ignorance. It comes from an ignorance of ourselves and our ability to achieve any outcome we want if we just set our minds to it. Envy reveals something that we don't know about ourselves and need to know in order to achieve our own perfect happiness.

At its heart, envy is desire - a sign pointing in the direction of our dreams, a sign we need to pay attention to on our journey. It may not always point us in the direction of Italy, but it always directs us toward any great big dream that we think is unattainable, but really isn't.

When I wrote Colleen back and asked if she thought there was an element of envy in the statement "You're so spoiled..." she agreed. She also added that there was no malice in the statement, just wistfulness. And I believe the sense of wistfulness - really, powerlessness - associated with our desires is another misunderstanding.

Envy is a form of power. I want us to see envy as a manifestation of our desire - of wanting something - and associate that feeling with power. Rather than feel wistful about what you want, get excited! Be like the child and demand with all of your might that which you desire.


© Stacey Curnow. All rights reserved.

About the Author: Stacey Curnow is a life coach and certified nurse-midwife in Asheville, North Carolina.

Hi all,

I came across this fascinating article/research study connecting oxytocin with Williams Syndrome and Autism.

Drs Ellie and Sugar will be particularly interested in the oxytocin angle in this research - I certainly was.

It appears to link the trust and sociability factor in Williams Syndrome (my daughter's genetic condition) to high levels of oxytocin! And suggests that the trust and sociability factor in autism would be increased with more oxytocin.

Coincidence? Or just the natural order of things? Perhaps if I hadn't been introduced to the oxytocin factor by Ellie and Dr Sugar this article would not have sprung out at me in the way that it did!

Please let me know what you all think.

Love, Chineme