Rare Disease Day

Last Saturday was Rare Disease Day 2015, which I guess most people don't know about unless, like me, they have a child that fits the category and a Facebook feed full of people whose children fit the category. Sometimes I miss the days before we knew about Rare Disease Day, World Sight Day, Autism Awareness Month, Jeans for Genes Day, and so many other days... It used to be that Ron came back from school with a note saying we are having a red/blue/green t-shirt day for this or that cause. Please donate a pound. And all we cared about was how are we supposed to find a green t-shirt in the next 24 hours. Ron is a redhead - he doesn't look good in green.
Nowadays, I get emails and messages and requests to write about each and every one of these days, nowadays I don't understand why they didn't collect money in our school here for Rare Disease Day (or any day for that matter), nowadays I don't know how it is possible to not know about these days and their meaning for other people.
Nowadays I measure everyone and everything with relation to how they treat people, and mainly children with special needs.

And yet, today is Thursday and I am just now managing to finish writing about Rare Disease Day, because I can't seem to be ok with Albinism being part of Rare Disease Day. I have a really hard time with calling albinism a disease, because if albinism is a disease, that means Yon is sick. And Yon is not sick. On the other hand, every time I tell someone new about Yon's ocular albinism they take two steps backwards, like somehow it's or he or me are contagious. Like the fact that Yon's brain doesn't produce melanin can magically transport itself to the other person's brain and he will suddenly start growing blonde-white hair.

It took me all day (ok, I also got into a fight with my computer and couldn't fit the photo in the frame, which I knew I know how to do, and which eventually took me over an hour to fix) but I did join in the campaign, because at the end of the day I can't sit on the sidelines and not join something I support with all my heart just because I have a hard time with the labelling.
And I do, I have a hard time with labelling albinism as a disease, a condition or a disability. It doesn't make it any less true. I have a hard time getting the image of a sick child, or the meaning of a "diseased" child out of my head. But this is the point of Rare Disease Day - to make us understand that what we think of as a disease is not the only correct image.

For me Rare Disease Day is about two things -
It is about reminding us of the fact that medicine, like everything else, is a business. The Rare Diseases out there, or the "Orphan diseases" are the ones that gets dumped to the end of the line - there aren't enough patients to merit spending time and money and resources looking for a cure. But those "not enough patients" are people - dads, mums, children. It is so easy to look at numbers and statistics and say hey it's just 1:200,000 people... It is a very cold comfort for the people who has the condition, to their families, to the people who have to say once and again - no, there will be no cure for that, no one is even looking. Trust me, I say it often enough.

And most importantly - and the reason why I write about Yon so much in this blog, the reason why we tell people about albinism, the reason why I join in every campaign is that people are afraid and hateful and uncaring for what they don't know. Just today I read in Blind Children UK that new research shows that almost half the parents they asked would not invite a child with sight impairment or blindness to a party or a play-date. How many of these people ever saw a child with sight impairment? How many people do you know who has albinism? We have doctors treating Yon who never saw a person with albinism. All everyone knows is the mental image we have from the movies, from the books (like The De Vinci Code or The Heat), where to call what they depict incorrect will be an insult to the word. We are afraid of what we don't know, and the mental image we create of that thing. For the same reason watching the movie after reading the book is always a let-down (and not just because usually the plot in the movie sucks) - the onscreen image is always different than the one we created in our mind. The same is true for the real-life image. This is why we need days like Rare Disease Day, this is why we need inclusion, this is why we need to know.

I have a lot of people on my Facebook and in life who will not "like" or like this post or any post I write about Yon, who don't care, or don't understand or think I am putting him "out there" too much and flaunting his differences instead of being quietly relieved that he "doesn't look different", that I can hide his albinism, or the Asperger. It is easier to "like" a cute cat video, it is easier to share a photo of a cake, than it is to understand how hard it is for kids like Yon to fit in, and how the fact that he does is a miracle. How we can talk for hours about the fact that he decided to learn how to go down the stairs. How amazing it is every time he recognises us from afar, and how when I changed my coat the other day and he didn't recognise me it broke my heart.

It is so much easier to send our kids to a school where everyone "is like us", where they (and mostly we) won't have to encounter anything that makes us feel uncomfortable, anything that will force us to explain to our children about differences and specialness and other ways of life.
It would be so much easier for me to hide Yon's differences, to have him labeled a lot of other things, but not disabled, or blind, or Autistic. But I won't.
Because our children, my child, are not diseased. They shouldn't be hidden and banished to a dark corner or swept under the rug. They shouldn't be a dirty little secret to be hidden from the world. They should be celebrated and congratulated and embraced.
Because it is our children - the sick, the different, the Special - who makes society into humanity.

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Learning to ride a Bicycle

Days like today, when it's been raining for hours nonstop, Hidai is travelling, and the universe keeps sending me negative emails, these days are the best time to find a positive thought and hold on to it. Well, actually these are the days to get into bed with a (very) big box of chocolate (or cookies. Or cake) and turn on the TV. But seeing how Hidai is travelling and someone will have to go out in the rain and get the kids home, thinking positive thoughts will have to do for now.
Since I'm fresh out of positivity right now, I've decided to write about the big project we had this summer - We decided to teach Yon how to ride a bicycle.
Riding a bike is such a small thing, it shouldn't warrant a post I guess, but with Yon it is so much more - it is (warning! Schmaltzy comment ahead) one small proof that he could do whatever he sets his mind to. Yes, it is a small leap from riding a bike to ruling the world!

Up until now Yon has never shown any interest in being anywhere but standing firmly on ground (or at least if he is on a scooter, having someone else pull him along), and with his Ocular Albinism and Aspergers we accepted the fact that he will not be able to learn how to ride a bicycle (or a scooter, or a skateboard, etc), but his Reception teacher told us at the end of last year that he really likes the tricycles at school. It took him all year (apparently. We knew nothing about it) to master it, but he did, and he rode around the schoolyard freely.
Our first reaction, naturally, was doubt (okay, we didn't believe a word she was saying), so we politely asked her if we could get a demonstration of Yon on the tricycle, and since she is a very nice person (who also knows that we will just keep asking) she let Yon show us how wrong we were.
It was amazing, seeing him race around the playground, not hitting anything, making all the turn, stopping on the correct spot. But more than that it was amazing seeing his enjoyment.
The next week we bought him his first real bicycle - red ones with flames painted on them - and decided to teach him how to ride.

Hidai assembling the bicycle

How do you teach a child with about 40% vision to ride a bicycle? Well, you make sure there are not a lot of people around... To be honest we did it the way we taught Ron how to ride - we bought him slightly small bicycle so he will feel more secure (and so he won't have too much speed) and started him off with training-wheels and about 30 minutes of "bicycle-time" every day for 10 weeks in our communal area (that is big, flat, and doesn't have lots of people walking around).

It took him a few days to catch the whole mechanic of the thing - starting, paddling, turning and stopping - but after that he was free as a bird, riding around without a care in the world.
Yon has no sense of fear, or that he has to look where he is going, so he rides like he walks - talking nonstop and without looking anywhere near where he is going, which for the rest of the world could be a little heart-attack inducing, but for him is perfectly natural.
We did try to let him ride on the street a couple of time, but Hidai had to run next to him the whole time and ward off unsuspecting soon to be bicycle accident casualties. So we got back to communal-area riding.

After about three weeks we decided it was time to take his training wheels off, and though it may seem like it was an easy and logical decision, we were petrified, and worried, and not at all sure Yon will be able to learn how to ride a bicycle without the training wheels. Balance is not his strong suit.
I won't lie, it wasn't easy. Poor Hidai had to run with him, providing balance, for about two weeks, until Yon finally got it. I suspect some of it was due to the fact that we find it so hard to let go, and that Yon enjoyed having Hidai run after him.

Teaching Yon how to ride a bike gave us a rare insight to his vision. With Yon you'd never guess that his vision is as bad as it is. He never falls or bumps or asks about things he doesn't see well. He has managed to teach himself so many techniques of dealing with the world, that you really believe he sees everything, even when you know he doesn't. The only time we see how much he doesn't see is when we take him to the hospital. He can't fake his way through an eye-test.

Then and when he rides his bike. When we took away his training wheels, turning and going through the big metal gates we have around the building became impossible for him. He just couldn't see or even estimate how wide his turn should be or the width of the gate opening. We practiced for weeks, going through the gates in and out, turning again and again, so he should learn how to "feel" the turn.

But he did get it, and as silly as it sounds, it was one of my proudest moments as a parent seeing him ride his little red bike all on his own.

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Asperger

They lead us into a bright room and invite us to sit on uncomfortable chairs arranged in a circle so it's not so formal, after all we're here to "chat", and it all feels so surreal. They look at us, and start scribbling. What are they writing? There are three of them, who do I look at? Why is it so bright in here?
Do they think a bright light makes getting bad news easier?
They are all polite, and kind, and talk to us in that voice that makes me feel like they think I'm an idiot. And they all keep looking at us and writing.
Is this a test to see how we react? How does one reacts?
How are you supposed to react when they tell you "and this is why we think JonJon is on the spectrum, and has Asperger"? What is the right way to react?
We argued with them.

Typical Yon

This is what it all came down to - five years of wondering, a year and two months of waiting for the assessment and finally five meetings in the last four weeks - those three little words. Yon has Asperger.
Because having Ocular Albinism and being partially blind isn't enough.
So we told them they are wrong. He has "blindism" which is due to the fact that blind (or partially blind) people have some traits that you also find in people with autism. Besides, it is a known fact, we told them, that everyone is on the spectrum and that there is a tendency today to over-diagnose. And lastly we told them he is getting better - a year ago he was so much worse, so if he has gotten so much better in the span of a year, maybe this time next year he'll be even better, maybe next year he will be "normal".

On the way to the last assessment

We came into that bright room prepared to hear he is on the spectrum, and we came prepared to fight it tooth and nails. We were ready for this argument, after all we have the winning card - Yon's vision. How much do we really know about what goes on in the head of a five years old who is partially blind? How much does any of us really knows about blindism? not much, which is why you can feel comfortable in saying that it affects most areas of his life - food issues, routine issues, gross and fine motor skills, inability to stand in the queue, needing to explain everything that is going to happen in great details, noise and touch issues, and trust me I can go on. But then there are the things you can't explain with his vision, those same things that got us to that assessment room in the first place, those things that made us look at him and wonder. No amount of trying could make us relate his communication problems, his social issues or some of his behaviours to his vision. Believe me, we've tried. And then there are the things we didn't even know were a problem - his ability to do the same activity for hours, his tendency to quote word for word movie scenes, his playing imaginary games with himself but not with others, to name just a few.

During the assessment

They never argued with us, they nodded and said "of course, you are right" to everything we said. They just kept on going, listing more and more things that Yon does, things they saw and things we and his teacher said, and with every thing they said we nodded and said yes. With every thing they said our arguments got weaker, the room became brighter, and our hearts became heavier, it weighs a ton, that one word - Asperger.
It wasn't that it came out of nowhere, that we were blindsided, it wasn't like that word just "fell" on us without being prepared. In the last year and a half we've made so many changes in our family-life to fit it to Yon, we didn't even notice how much we accommodate Yon's needs until they actually said that there is nothing else they can suggest we improve. No, it wasn't the shock or the "how did we not see that" or even that it took more than a year to get to the final and official diagnosis.
We needed that time to come to grips with the albinism, we used that time to make so many changes and improvements to his life and ours, we were ready for it now, which was not the case last year.
And yet it weighs a ton. All of this somehow makes it worse. We hoped, really really hoped that all the improvements and growing up Yon made meant we've tipped the scale and he will be on the other side of the border, because yes, while it is true that we are all on the spectrum there is still a line, a border that devices those who get the diagnosis and those who don't. Oh, how we wanted him to "just" be weird & eccentric.

It is not the shock of hearing something you didn't think you'd hear, it's the finality of hearing the words out loud. 
It is the fact that it is no longer "YonYonism", it's Autism. It is that I still feel like I did last April when we started down this road - I blame myself. It might be stupid, but these are our genes that are causing this, all of this. We are the reason that he starts life at a disadvantage, that he will have to fight more, overcome more, be Special. We are the ones that are supposed to give our kids the best start to life, the best options and opportunities. We are supposed to protect our kids from all bad things. We failed him. Twice.And it is that there is just something so darn sad about this last official stamp.

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And the shoes keep dropping

Amongst the million of things that could, and did, go wrong over the last few months, everything relating to Yon was, like always, front and center. It is amazing how much un-static a static condition can be, I mean, every time I think that we can just close our eyes and rest a bit another shoe drops.
And for some reason the shoes are like dominos, when one drops you really can't stop the rest from toppling over.

It all started in April with the freakiest eye test result we've had for a long while. Whenever anyone asks me about eye problems with kids I always tell them my first two rules - always go to the doctors expecting the worse and kids eye tests are highly unreliable.
But ocular albinism, and this is a well known fact, is a static condition, so rule number two shouldn't apply, right? Wrong. The fact that it is static is the only good part about it - you can't lose whatever eyesight you have. Why is it good? Because after you spend three years fearing for your child's vision, after you spend three years of patching and looking and expecting every eye test to discover that he lost one eye, hearing that it won't happen is a good thing.
Discovering that his left eye has deteriorated over the past six months and he has lost another line on the eye-test, is not a good thing.
Hearing that oops we might have been wrong and he might lose the vision in that eye is not a good thing.
Going back to three months between visits to the hospital instead of six because we have to make sure his vision isn't still deteriorating is not a good thing.
Living with yet more guilt because we didn't notice he has difficulties with his left eye is not a good thing.

Then came the DLA situation. Living in the UK and reading the papers you might think getting benefits is oh so easy. Trying to claim a disability benefit for Yon made me feel that not only is it not "easy", it is darn near impossible because the hurdles and hoops you have to jump through are there just to make you give up. First they lost our papers. Lost it. The forms it took me weeks to fill, and were sent in the special envelope attached in the pack we received from them, were lost. The forms I agonised over, and cried over and filled my heart with despair over my child's future were lost. It is not such a big deal. It happens all the time. That is what the helpline advisor (or whatever the correct role description is) said, just fill it again.
Not a big deal. Sure. I guess the forms that asks for your child to be legally and publicly declared as disabled is just like the form for... I don't know... Enrolling your child in an after-school activity. After all, in both of them you write the child's name and your phone number.
Of course I had a copy of everything I sent, I have been in this "we lost all your documents" story before (though in another branch of the government) so it was just a matter of photocopying it all again and sending it to the right address (not such an easy thing when the address on the form and the address we got on the phone are not the same). It still took me 24 hours to manage it. But hey, not a big deal.
Then I got a letter saying I need to send in my passport and fill in lots of information I have already filled in the first form about where we are from. Send my passport. To the people who already lost my forms. Not bloody likely. So we went to a Job Centre to send "verified copies" which means the information guy at the entrance signed the copies I've made at home. Actually we had to go to two Job Centres because apparently that very difficult procedure of signing your name isn't done everywhere.
Then they lost my forms again.
Then, after I explained I am holding in my hand a verification from the post office that someone there signed for my letter, they apparently found my documents, but informed me that because I have not asked to get child benefits for Yon (which I didn't know I was supposed to do) I can't get the disability benefits for him.
Then they called again to ask me again the same questions I already answered twice.
It is more than four months since we sent in the claim form. The claim form that uses Yon's case (a five years old who is sight impaired) as an example of someone entitled to DLA. And we are still waiting. Now, after the third time in which I gave my NI number and assured everyone that I am indeed a tax paying self-employed citizen, it seems we are waiting "for a decision".

Then came the Islington council people and announced that though we have been waiting for six months for Yon's sight-impaired registration card, it seems that the problem is that... How did she put it on the phone? That they didn't do their job and our "case" is just sitting there on someone's desk waiting. For what? Probably for Yon to be old enough to be moved to the grown-ups team.
This phone call is the sixth one we've had with them since the hospital sent them the papers in December. And it comes after the obligatory "we lost your papers", the very entertaining "we don't do these kind of things", and the hilarious "we are now in the process of reviewing the process. It is going to take an undetermined number of months in which we will be unable to do anything with your claim".
And you know what the saddest part of it all really is? I didn't even want to register him. I hate the idea of registering Yon in some big book of "defected" people, as if he needs to be branded, as if he should have a permanent sign on his forehead. But I am doing it anyway, because when you go to the theatre and you need to prove he is really half blind, so you'll get the seat where he could actually see something, you need that plastic card.

Then there is the school, where everything is fine and we are just exaggerating, where there isn't an ability to get Yon large print books, where it is our fault we don't have a statement for him yet, where it is not really sure how we transition Yon to year one because "all kids have a hard time and he'll be fine".

And lastly we have the developmental and behavioural assessment (CDAT) we have been waiting for for 14 months. Because, who wants to guess? Yes. They, too, have lost our papers. We have now had the school visit (where our teacher told them that everything is fine and we are just exaggerating) and the home visit where Hidai & I spent an hour and a half answering questions about any and every aspect of living with Yon. They have added a formal speech assessment, which to my way of thinking reaffirms what I have been thinking and fearing and telling the school - Yon has a speech delay that can't be explained away by my being over hysterical or his being bilingual. Then we also have the clinical observation session and the "let us tell you what is wrong with your child" session.
The always go to the doctors expecting the worse rule dictates that I should prepare myself to hearing that Yon has an additional problem. Besides the vision, and the speech that is.

So what do you do when the shoes just keep dropping, you ask? what is the lesson here, you wonder? Now that is an easy question. The lesson is, never stand next to scissors. Because you might get annoyed with your hair and it being in your eyes all the time and think that the day the people from the CDAT are coming over is the best day to "just straighten it a little".
Trust me, it does not end well.
And no, there will be no photo of that.

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Taking that next step

For Jewish people Tuesday is a lucky day. It is supposed to be doubly-good (I really have no better way to translate it). I wish my Tuesdays would get the memo. I had a horrible day, where things continued to overwhelm me and I was looking at all the tables in our house trying to find one I could crawl under. In an attempt to relax and take my mind off things I did laundry. How pathetic is that? Obviously it didn't help but at least everyone has clean sheets and I had the perfect hiding place - under the laundry. 

But you know what they say about finding the silver lining and all that so this is not another dark hopeless post but one about the pots of gold I found today.

The first one was all those comments I got which, together with massive amounts of chocolate (I ran out of cake) got me through the morning. 

When I wrote on Monday about my anxiety attack and how bad I was feeling these past few weeks, for the first time since I started my blog I hesitated before pressing the "Publish" button. I know it's weird coming from someone whose blog is all about the most intimate things that happens in all our lives, but somehow that post felt so much more personal and private and publishing it felt like bearing my soul. I was worried people would laugh at me or belittle my feelings or just look at my post and say "oh, grow up already. Life is tough and it's past time you learnt it". To be honest, I am not really used to having people aside from Hidai and my parents who worry about me, and I was totally unprepared for the amount of positive feedback I got, and all the people who commented and wrote and worried about me. It helped so much, so I just wanted to say a gigantic thank you to everyone.

The second was Ron. Last week was a rough week for him in school with his one-on-one talk with his teacher going from bad to worse and our understanding that it is time to take him for a formal gifted-kids-assessment (also known as an IQ test) if we want to stop being "those parents". We had a talk with his head-teacher on Thursday about letting him go even more forward, and letting him prove what his limits are and fixing the fact that he got the impression the school doesn't care about him. I know it is going to sound silly, but we worry constantly about Ron's education. To be honest the school system isn't very helpful in that and gifted kids rarely get treated like SEN kids, though they are, and they don't get ELPs or professional advisors and meetings to discuss their progress. It is so hard to find teachers who understand gifted kids, who thinks of them as needing extra help and attention, because it is so hard and so important to keep them challenged and interested and prevent them from becoming underachievers. We are very lucky that our head-teacher sees things eye-to-eye with us and she set to fix what needed to fixing. As a result Ron had what he considers the funnest day of school - he got to do some level 6 maths tests from 9:30am till 2pm and in between tests he talked to the head-teacher about his goals for the next half-term. Add to that he got to participate in a special maths course that is being given in a local secondary school, and they had some questions from the Junior Maths Challenge and he got them all correct. You have never seen such a happy boy.

The third was Yon. When Yon got diagnosed I didn't have time to think or to feel or to do anything but try to accumulate enough material to make sure we are giving him the best help we can. When your child is diagnosed with a disability you go through the process of grief, complete with all the trimmings and stages. I have no idea what stage we are at now, most days it's acceptance with a dash of denial I would guess. But the thing I found is that no matter what stage you are on, you always have that one thing that bother you most, some tiny fear or anger or sadness about something he will never be able to do. It could be that he'll never play sports, or that he could never drive, or that he might need a cane. For me, it is that he won't be able to read. I love books, always have. Books, and love of reading, were the one most important thing I wanted to give both my kids. Ron learned to read when he was two years old, not because he enjoyed reading but because he enjoyed the learning process and the patterns he discovered within. I wasn't the one who managed to convince him books that are not about football are interesting, that honour is reserved to his last year teacher to whom I will always be grateful. Since he discovered reading is fun, he has become a regular bookworm and is now stealing my Kindle every chance he gets.

But with Yon it is much more complicated. How do you teach a child with 40% vision to read? How do you teach him to enjoy a whole book when you are not sure he can read a sentence? How do you teach someone to read when the letters keep moving in front of their eyes and they need to read each letter individually? Yon didn't want to learn. He is so different from Ron, and learning through visual aids is not his thing at all. But reading requires visual learning. Add to that the fact that he doesn't like to be taught at all, or being told what to do, and you get a problem. Yon taught himself the letters and sounds from listening repeatedly to songs on YouTube, and then over the summer I convinced him "to be like Ron" and do some workbooks which were mostly doodling and made sure he was prepared for reception.

What I wasn't prepared for, was how good his reception teacher is with him, and how much he came to enjoy learning to read. Today he came home from school and was so extremely proud of himself because he got his new reading book. It was an Oxford Reading Tree level 4 book (a year 1 book) and a note saying he is the most advance reader in his class.

Sometimes there are days when you look around and you ask yourself how am I supposed to go on? How am I supposed to climb this new mountain? Then you open your eyes and see a nine years old conquer every new challenge you put in front of him and a tiny not even five years old overcome blindness without ever loosing his smile, and you see a world full of people who care, and suddenly it becomes a bit easier to take that next step.

I am linking this post with the wonderful Small Steps Amazing Achievements linky over at Ethan's Escapades because I've missed it, and the Siblings linky because of this photo of my two dudes :)

I hope you enjoyed reading the post :) I would really appreciate two minutes of your time and a vote in the writer or family categories in the BiB blog awards - Just press the photo and copy in my URL -
http://londondegani.blogspot.co.uk
Thank you very much!

  

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DLA - filling the disability forms

You might have noticed I wasn't here this past week. There were no new posts, no tweets, no Facebooking, no me anywhere around the web. You might think it was because it was half-term and I was busy doing all these wonderful educational but still fun activities with the boys, and really who am I to burst my image as one of those mums who uses every opportunity to have out door fun with their kids? An image I apparently have, judging by the fact that I was nominated as best family travel, innovative and crafty blogs. Me. But the sad truth is we left the house once this whole half-term and even that was so we could go to Yon's Outreach program half-term coffee morning and meet his advisor. Hidai and Ron left the house a second time to see the unveiling of Dennis Bergkamp statue at the Emirates and the match.

No, my week started with two sick kids, continued with benefits and disabilities, and ended with depression and anxieties. So I wasn't here. in fact I wasn't anywhere, I unplugged all electronic devices (except for playing endless rounds of Candy Crush and Pepper Panic), cancelled all calls or meeting people, and pretended like I can just hide under the covers for a week. Disappearing is my coping mechanism, it is what I do every time I feel the abyss closing in on me. It all started on Monday when both boys felt rather poorly and I decided to fill Yon's DLA forms. DLA is a disability benefit and choosing last Monday, the day of the Benefits Street big debate, to fill the forms might not have been such a good idea. Mine is not a political blog or one that thrives on controversy, and so I have not written my opinion on the war on benefits before, but I do have to say this, it feels awful. Filling this form was (still is as it's not yet finished) one of the hardest hurdles to go through. The form is divided into 3 parts - the details part, mobility part and care part. I started crying in the details part with the doctors and tests and diagnosis. The mobility part was all about how he needs help moving around because, you know, he doesn't see the around. But the care part, that one broke me. The point is to show how much assistance Yon needs during the day. You would think, like me, not much. He wakes up - goes to school - comes back - plays a little - goes to bed. Right? Not really as it seems. Because you start reading the questions - problems with moving around the house? yes; problems with food? yes; problems with noise? yes; problems with bath/toilet? yes; problems with clothes? yes; problem with speech? yes; problems with communicating? yes; needs supervision to make sure he is safe? yes; needs help with development? yes; needing extra help at school? yes; and of course, problems with vision? yes.
The only questions we answered with a "no" were to do with medicine.

Then you have to write, and explain why you answered yes to almost every question in the form, and then add all the documentation from the school, hospital, advisors, council, whatever you have.
Then we took it to our outreach advisor to go over it with us and see that we filled it correctly and wrote everything, and because you have to add a letter from someone who knows and treats the child. Because his parents aren't enough.
To get something between 20 and 40 pounds a week. Who in their right mind thinks that anyone will go through this if they don't really need it?
I get the point of view of the system, I get the need to put all kids on the same level and judge them on the same scale, I get the need to not make it easy for people to trick the system. But I think the truth is it deters the people who needs it and not the people who are heartless enough to claim disability benefits they are not entitled to. Filling forms like this one, or like the Arsenal one is having to beg for help, having to relive the worse parts of your days, having to shout out to whomever will listen "but he is! he really is disabled!". It is hard only when you have a disabled child.

The people at Arsenal Disability Team for example did not think Yon is disabled enough or that we are worthy enough to buy 4 tickets in the front row so Yon could actually see what is going on and not have to sit  in a crowded middle row next to the giant speakers. They sent me to look for teams that aren't doing so well, or wait to next year because they prefer to sell their tickets to real fans. But hey, they have a seeing-eye toilets around the stadium somewhere. Aren't you proud of them?
We eventually got the tickets, because we asked for help from people with more connections than us in the Arsenal headquarters, and we will be going to one of the matches in April. But it is still unthinkable to me that we will have to feel so bad and jump through so many hoops. It kills me that we have to get special treatment, that we have to beg for favours, that once and again we have to prove that Yon really doesn't see. It kills me that we are made to feel like beggars and thieves, like we have to stand and justify once and again Yon's needs and his entitlement to be able to live a full life. In a perfect world, society should help the weak, the Special, the defenceless. It should support and accept the different.
But it doesn't. It makes you fill forms that reduce your child to a burden and you to tears.




I hope you enjoyed reading the post :) I would really appreciate two minutes of your time and a vote for Best Writer (and best blog if you are so inclined) at the MAD blog awards -
Just press the photo and copy in my URL - http://londondegani.blogspot.co.uk
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How to explain disability to kids?

How do you talk about a disability? When is the right time to start explaining to your child that he has a disability? When is the right time to start explaining to your other child that his brother has a disability? What do kids understand when you try to explain away a disability? And how can you make sure they don't end up defining themselves through that explanation? I think these questions haunt every parent who has a Special child. Some day my child will come to me and ask me - why? Or worse, he will hear something from someone else and then will come to me and blame me for not telling him sooner, for not making sure he is ready.
I am not different here, why would I be? It is one of my biggest fears having Yon hear something about his Ocular Albinism from someone else. Having him subjected to the "albino" or "blind" or worse name calling, having him think he is less. And on the other hand the possibility that it will happen is so slim. He doesn't look albino, or blind. Just sometimes weird and funny. So why would I rush it? Am I not running the risk of doing more harm than good if I rush to explain to him things he isn't ready for and he doesn't understand?

For his part, Yon never asked us why he needs glasses. He has his glasses since he was about 10 months old, and always loved them. They are a part of him as any other body part, and never stopped him doing anything he wanted, so he never really questioned their presence. Lately they have even become his "special feature" - Ron has freckles (or spots, in Yon speak), I have glasses - which have made them even more desirable. We tried to ask him why he needs his glasses, and his answer was short and to the point - because I love them.
He seems happy enough with that explanation, and in fact refused to accept any other explanation for a long while. So are we wrong to leave it like this? We did try to explain to him that he needs them because he sees less well than Ron, and so the sun won't hurt his eyes. As a reply he told us that the sun warms his toes and he needs to take his socks off. Classic Yon for "I am not going to discuss this with you so all you will get are random sentences that will annoy the hell out of you".
We took him to meet other children with Albinism at our Outreach program, and he really was very happy there, but other than "he has glasses like me!" he didn't see any resemblance between him and the other kids, nor did he care why he is going there, or who they are. He just enjoyed playing games and running around.

But then there is Ron, and here is where the story becomes much more complicated. Because Ron needs the answers. He hears us talking, he goes with us to the Outreach program gatherings, he comes with us to hospital, he has the need to know everything anyway.
And so we explain some of it every time, but it is so hard for him to really understand, and we try to keep it on the "not really serious" side of things because he also has a tendency to worry too much and whenever Yon hears his name in the conversation he has to start talking, mostly about unrelated things, so it makes having a serious conversation a tad harder.
Then we sat down to eat and Ron heard us talking about wanting to take Yon to watch a football match and needing to find tickets in the first row, and our letter to the disability team at Arsenal to get that, and he started asking us questions about Yon's eyes, and what disability is, and he was really intent about it and about the fact that Yon won't get any better. He is studying about the body and so he wanted to understand the mechanics behind Yon's condition and its name and he found it really baffling. I understand why it is weird to comprehend the fact that Yon really doesn't see well because he isn't accident prone and he doesn't let you feel that he has a problem or difficulty. And why it is tough to understand how his glasses don't really help him, or what 40% vision means.
So we told him he really doesn't need to worry about all this, and that it is fine to not really understand everything, and he looked at us and said "I want to understand more about Yon's eyes because I want to be able to help him".
And melted our hearts.

I hope you enjoyed reading the post :) I would really appreciate two minutes of your time and a vote for Best Writer (and best blog if you are so inclined) at the MAD blog awards -
Just press the photo and copy in my URL - http://londondegani.blogspot.co.uk
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The Other Breeds of Guide Dog: Assistance and Companion Dogs

Guide dogs are a subject very close to my heart, first of all because when I was young we had a beautiful labrador who didn't quite make the cut for being a guide dog, but was the gentlest soul I had ever known. He was the kindest, nicest, most loving being on earth, and was so much more than "just a dog" for me. For the first time I understood the what these dogs can give people, and it is so much more than just eyes. He died more than fourteen years ago from cancer and left us all heartbroken. Lately he has been on my mind, because of Yon. I am known to worry mire than I should, and also well in advance, but I look at Yon and I have no idea how to teach him to cross the road safely, how will he be able to walk alone at night, or in places he doesn't know well, or go on the right bus... All these questions have been haunting me for quite some time, and lat month we had a conversation with Yon's advisor and she said he might need some visual aids for these things. She meant a cane. Or a dog. To be honest, I hope he doesn't. But he might, and between those two options I thought I prefer a cane. It's easy, it's portable, It's foldable. It's so much less conspicuous.
The thing is, a dog is so much more than a cane, and the help it gives you does not end when you get home safely. I have no idea how it feels having to depend on someone or something else in this way, I  really hope Yon won't need to learn how to either.
But after that conversation I did some checking on guide dogs, and when Bolt Burdon Kemp contacted me and offered to write a guest post to explain about all the good guide dogs can do and the wonderful ways in which they can help, of course I said yes.

Guide dogs aren’t the only type of man’s best friend that can provide aid, support and relief to those who need a helping hand. Increasingly, specially-trained dogs are being used in cases beyond visual impairment, to work with people whose conditions may not even have overt physical symptoms. Instead, people who have suffered from traumatic brain injury, epilepsy or seizure victims, as well as those who need assistance with mobility, can also reap the benefits of having an assistance or companion dog at their side.For those who have experienced a traumatic brain injury, the side-effects can be extremely wide-ranging, and as such they may need both physical and emotional support. In these cases, assistant dogs are ideal, as they can be trained to not only perform routine tasks and assist with practical chores, but can also provide a level of emotional help as well as potentially, in the case of those at risk of seizures, alert their owners of an impending episode.

Traumatic brain injuries could result in the victim becoming wheelchair-bound due to reduced motor function. This in turn would require them to receive the same assistance as someone seeking a mobility assistance dog, and the dog's help could revolutionise their life. The dogs are rigorously trained to give practical help for the everyday lives of someone who is not as able to move around. For example, they may assist in small actions that we may take for granted - opening or closing doors, picking up dropped items and turning lights on and off. However, they can also help with more complex tasks such as dressing and undressing, and even loading and unloading the washing machine – making them invaluable for the tasks necessary to live an independent life. Physically instructing the dog with small movements can also help to develop coordination and muscle functions in a gentle way.A traumatic brain injury could also result in the victim being prone to fits, or epileptic seizures. Fortunately, some assistance dogs are also trained to support those with this condition, either as a result of a TBI or otherwise. It has been said that these dogs can alert their owner of an impending fit at least 10 minutes prior to it occurring, and can assist them in finding somewhere safe before it occurs. There are also dogs that are being trained specifically to alert diabetic people about the same issue. Finally, many people who have experienced a TBI will be left with emotional issues. An extreme head or brain injury can leave the victim feeling isolated and lonely, perhaps because they are self-conscious of the after-effects they may be experiencing (which may include speech difficulties, memory problems or a lack of concentration.) In these cases, a companion dog can make a world of difference by providing them with a loyal companion to help them overcome their loneliness.Having this company can also improve confidence and communication skills, as it provides an ice-breaker for conversations as well as the need to communicate with the dog to instruct and guide it, which all helps with developing speech. The presence of the dog can also be extremely calming for someone who may feel anxious or stressed during their recovery, and having them there can help to ease these feelings. Therefore, the after-effects or symptoms of disabilities, brain injuries or epilepsy diagnosis can be eased or improved as a result of the presence of these dedicated animals. Those who need support due to serious illness or injury, which can range from help with day to day activities or companionship and distraction from their condition, can benefit from an assistance or companion dog in a variety of ways.

Life isn't always what we expect. Sometimes it goes in ways we can't predict, and some times we find ourselves in places and roads we never thought existed. I know that for me, this road we walk on with Yon is one of those unexpected-never dreamed of roads. And one of the hardest lessons for me was to ask for help. Sometimes this help is in human form. Some times it can be a dog.




This post was written in collaboration with Bolt Burdon Kemp.

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The disability program conundrum

"Excuse me, do you perhaps have a disability discount?" Who said that? I look around, until I realise, hey, it was me. I can feel my cheeks beginning to glow bright red (yes, I know who Ron inherited his tendency to glow from). The shame creeping up, and I can't stop the words rushing out of my mouth "it's our youngest, he has a vision problem, he isn't really blind, I am sorry I asked, never mind". Once. I did it once at the apple store, and even though it has been a few weeks since, I still feel ashamed for it. I still feel as if I did something wrong.
Yon got his CVI (certificate of visual impairment) just before Christmas, and he is now officially disabled. The next step is his registration card from our local council, but it's just a formality really, because the CVI is what's important. It's where they state in nice large black letters that Yon is visually impaired, Which is the nice new name they gave to Partially Blind. Because we are always looking for nicer ways to call things so they will sound less severe, less scary. He has 40% vision, so he is only just above the limit of being legally blind. And when I say "just above" what I mean is one line in the eye-test. You know how you go to the eye doctor and you have this poster with all the letters? Yon can see about 3 or 4 lines from the top. Legally blind people can see 2.

And still when we asked our doctor about registering him as partially blind she said "why would you? After all you won't be able to claim any benefits for that" and made us feel like the worst people and parents and immigrants in the world. In the span of a second we fell into all the stereotypes - the middle class people who try and squeeze benefits they are not entitled to, people who use and abuse their child and the system, immigrants who just want to steal money from the UK.
I find I need to justify myself here, to explain how it wasn't for the benefits, how we've never even applied for child benefits. That we didn't even know we had any benefits to claim.
The reason we wanted the registration is because Yon's is an invisible disability. At least until you really look at him and start noticing all the little things, and then the bigger things. You would think he misbehaves, fearful, unfriendly, maybe even stupid and immature, if you know a little about special needs you would think "this child is on the spectrum for sure". You would look at us and think we baby him, or are too strict with him, or just plain bad parents. But unless you know what partially blind or albinism looks like, you will never think he doesn't see. And the saddest part of it is that even after you'll know the truth you won't remember it. Because "he doesn't look blind".
That piece of paper is our only way to prove to people, to teachers, to other parents, to ourselves, that as good as he is in deceiving and hiding it, he really doesn't see. That all those other things stem from that.
It was never intended for benefits, or discounts, or programs.
And there I was a few weeks ago at the Apple store asking about a disability discount.
And there I was today at the Arsenal website checking their disability membership.

Because I want to be able to go to a real football match as a family. Just for once. And I can't. We've been to an Under 21 match twice, but never to a real Premier League match. Because Yon has to sit at the first row, in the middle of the court or he doesn't see the match, and there is no way I can a mange to buy those tickets. Because he is afraid of the noise and the people screaming every time there is a goal, because he is terrified of the guunnosaur, because I can't be sure he won't start crying. Or screaming. Because I have no idea how or if anyone else in our row, and especially Ron, would be able to enjoy it. So I need a disability program.
Because when I take Yon to the movies I have to take him to the ones I know don't shut the lights completely, where he knows the place, where the loo is close, where I can get tickets in the middle row near the exit, where I can sit comfortably with him in my arms whispering "it's ok, it's ok" throughout the movie.
Because when I go with Yon to LegoLand I need to make sure there aren't too many people cramped together, I have to make sure I am allowed with him on all the rides, I have to make sure he doesn't have to wait too long in the queues.
Because wherever I take Yon I have to make sure it's stress free for him.

So I printed out the Arsenal forms. Four forms telling me how I have to prove this and that and provide copies of this and that, and be careful not to abuse his membership and how it's all very complicated and difficult to get to see a match. How much I should be grateful that they will consider me for a disability membership. None of these forms explains what the disability membership really means.
I didm't fill the forms. They are sitting next to me, staring at me, for the last few hours, and still I couldn't. Because these forms, in their language and their questions, make me feel like a fraud. They make me feel like every one of those stereotypes is true. They make me feel like I am using and abusing my son to get a discount that I don't deserve. They make me feel like a terrible person and a terrible mum.
I can't stop thinking how those seats are for "really disabled" people who deserve and need them, not people like us who use them to make their lives easier. I can't stop the questions from running around in my head. How can you do that? How can you trade on your child's disability? How can you fill a form that will get you access you won't have otherwise? How can you justify that to yourself?
I can't.
But I really want to take him to a real football match and have him and us enjoy it, and I can't do that without those forms.

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Letting go and letting grow

I don't remember being a young mum. I blocked that first year with Ron completely because the only thing I do remember is the feeling that it will never end. The only thing I remember is how much I felt that it will never change. That when people told me that when he is three I won't remember, when they looked at me and said that babies grow up, when they promised it will all be ok - I didn't believe them. In my mind then it seemed as if even when he does grow up eventually and is no longer a baby, it will still be the same - that endless cycle of misery. Bit by bit he grew up and I regained some sanity and the ability to leave the house without taking half the house with me, and bit by bit I blocked it all until I was willing to give up everything I gained back in order to have Yon.
Yon was our "easy" baby (though compared to Ron all other babies are easy), and still if you ask me now how I got them to sleep through the night, or how I potty-trained them or how I weaned them, I will have no answers to give you. I don't remember any of it. As far as I'm concerned it just happened and I didn't do anything to facilitate it. It's all the boys by themselves.

Yon is also our last child. Hidai and I reached that decision a while back and never looked back. I am not sorry for that decision (on the contrary) but it does mean Yon can stay in his favourite position in the family - the baby. Ron was always the classic firstborn, and I was eager for him to grow up which worked very well with his wish to grow up, so he always gives you the feeling that you can really talk to him, like you would explain things to an another adult. Yon is a classic second (or last) child - he does not want any responsibility, he lives for attention and laughs, he is a notorious drama-queen, and he wants to stay a baby. He wants his nickname to stay "Baby Yon", he wants to be cuddled and kissed and hugged, he wants to be "tiny".
As it happens he wants all these things but without actually giving up his ability to do everything he wants "by myself!" so his wanting to stay small is more theoretical than anything else. The problem is that I sometimes stop and realise I forgot again. I forgot he isn't a baby anymore, he isn't even a toddler anymore. He is four and a half. But between him saying he is tiny, his being the youngest, my tendency to forget (who knows what 4 years old are supposed to be like?), my unwillingness to compare him to Ron (unfair to any other child anyway) and his Ocular Albinism and special needs - it is easy to forget and "baby" him.

With Yon, it's easy to look at him and not really see who he is or what he can do. Mainly because you don't really believe he can. As easy a baby as he was, he was a very tough to handle toddler. The last couple of years (up until this July when he turned 4), saw us battling behaviours and habits and roadblocks we never imagined we would have to.
To my untrained eyes, it looks as though Yon had some developmental delays, mainly because of side-afffects of his Ocular Albinism. We are still worried about his speech, and eating habits, and his learning abilities. But this past 6 months he made such a big improvement in everything, and really closed the gaps. And still sometimes you forget that he can, that he should, that he needs to be challenged.
It is a constant battle the believing he needs to be challenged and us wanting to teach him he can do anything and everything on the one hand, and not over protecting him on the other. We are over protective anyway, and with Yon it is even stronger, that need to keep him close and away from any harm.

This is how we found ourselves a couple of weeks ago at Winter Wonderland standing in front of the rides intended for younger children looking a bit baffled. Yon wanted to go on the flying airplanes one. Ron wasn't feeling very well and though he wasn't really sick I didn't want to take the chance that all the spinning will cause him to feel worse and throw up in the middle of the fair. The airplanes did not have seats big enough for adults to accompany the kids. Yon was insisting he wants up.
What do you do?
We stood there a while, letting him see the ride in action, trying to gauge if he understands what it means. He doesn't like to be "up" usually. He feels less secure and after a few seconds he always wants to "go down" and feel the ground underneath him. He never went on any ride by himself. He was really insisting by that time that he wants to get on. What do you do?
We let him do it.

We let him grow, and stretch his wings.
And he did.

I am linking this with Jane's Small Steps Amazing Achievements linky, which is meant to celebrate our children's achievements, though I really am not sure weather the achievement here was ours or Yon's.

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Christmas cards

I haven't really kept it a secret that I love Christmas. I mean I've written about six posts relating to the holidays, posted about twenty photos of various holiday activities, and talked about it non-stop. My house looks like a giant bauble full of glitter has exploded all over it, I've been munching Christmas treats all day long, and the concierge at our building knows me, my apartment number and how many packages I got today when I just enter the reception area. And with about 700 apartments to look after I think that's saying something (no, contrary to popular opinion around here it does not mean I should stop buying things). But bit by bit I feel the "holiday anxiety" starting to creep up. You see, the truth is I don't like holidays that much. Ok I don't like holidays at all. They are too intense, to stressful, too full of people I rarely like, too... Too suffocating. For me, one of the main perks about living abroad with no family in sight was never having to go through another of those holidays again. Or so I thought. Because as the kids are getting older holidays are becoming much more important. Holidays, after all, are about forming traditions and connections. For many people this connection is with God, for some it's with their country, but for me it's about my boys. By choosing to raise my kids in a different culture, language, environment than I grew up in, I lost something that I couldn't fully appreciate up to that point - I lost the continuity thread that runs through the generations. They don't sing the same songs, read the same stories, or even learn the same history of the world as me. Their view of the world is different to mine and is build on different foundations. And that is exactly what I want for them, but it also makes finding that connection and traditions that much harder. It all depends on me. And I don't really like holidays.
I've adapted, as one does, and over the last four years we created our own traditions and I made my peace with the holidays. But then you have Christmas. And Christmas is not just any old holiday, it's The Holiday, and it comes hand in hand with a gigantic Christmas dinner, what feels like 1,000 presents, two weeks off school and work, and my parents. And the key to the success of what is starting to feel like Mission Impossible 7 is me. And I don't like holidays.

I do, however, like lists. I have a very complex Excel file to organise all the gifts (due to various family issues, I buy all my kids gifts and give them out under different names. Don't ask. It's as absurd as it sounds, and causes me distress to talk about). This file is my saviour, as I have to have the exact same number of gifts per child from each family member, and trying to keep track on what's been ordered, what's arrived, and what is yet to be wrapped is a sure way to go crazy. But it doesn't end here, because you have the teachers presents, the building presents (you know - cleaners, concierge, etc.), our presents, guests presents... Unrelated to that I have the holiday-visit-schedule because past lessons have taught us that six people do not fit well inside a tiny shoebox for long, so I set out to arrange a list of activities that takes into accounts 2 grandparents who don't like the cold, 2 parents who are very tired and 2 kids in different ages who like very different things, and one of them has special needs. Easy peasy. And lastly who can forget the Christmas dinner? Now, I've read all the magazines, and I've eaten 2 traditional Christmas meals, one of them last year we made ourselves. BUT this year we are hosting, and that is completely different because according to Jewish law if you are hosting one person it's as if you have invited a hungry platoon. You are required to make enough food to feed three times the amount of guests you have for at least three days (plus ten precent extra just in case). It's not just when you are talking holidays, it's every meal. But when it's a holiday? it's unforgivable if you don't. There is nothing worse for a Jewish hostess than no leftovers. The saying is, if everything you made got eaten and you don't have any leftovers than you haven't made enough food. Try harder next year. If anyone will be willing to come over again. Bad hostess. So you'll understand when I tell you that I have been stressing over the menu for two weeks now, and having endless conversations with my mum about how many types of pre-dinner nibbles is acceptable, and why I am not going to serve soup. How can you have a holiday dinner with no soup??!

I am having trouble sleeping. The stress of having a perfect (or at least acceptable) Christmas is getting to me, and as it's on top of a less than stellar time, I am starting to crack. I know I am over-reacting, but the last couple of Christmases were a bit on the tight end, and last year was six months after we moved here, so I really want this year's to be perfect for everyone. And last week I started to feel like I'm crumbling under the pressure of all that needs to be done. I really am a very organised person usually (ok I'm obsessive compulsive), and when I am under stress I tend to clean, clear and organise everything I see, but somehow this Christmas became like one of those monster-projects that you just can't defeat, you know the ones - every time you finish one task three jumps up and threaten to bury you underneath a new pile of "have to do's".

This is how I found myself in BHS last week looking for Christmas cards, without being sure even how many I need. Because I forgot to buy them. Ron loves writing Christmas cards to all the kids in his class. I have no idea how many of them actually celebrate Christmas, but since I couldn't find a box with 25 "season greetings" cards they got generic ones (and I also bought a giant dog for Yon. Or maybe it was for me. It looks exactly like a real one and it's fur is so fluffy and cuddly. I need cuddly). He got into the habit when we were in Gibraltar, where everyone give out Christmas cards every year. I think it's a lovely tradition and he enjoys it and doesn't seem to mind that it's less common in our school here. And on top of everything this year we had Yon joining the party. Last year I wrote his cards, but this year I wasn't sure what to do. Should I let him write his own cards or not? I hate these dilemmas, I never know what the right answer is, and I have no basis for comparison. As a rule of thumb I try not to compare Yon to Ron, because I know Ron is not a good indication of what a child is expected to do, after all not all kids know how to write in two languages when they are three.

This is how I found myself on Monday afternoon not really sure what to do, but Yon is going through an "I want to be Ron" period, and he wants to do everything Ron does. He really wanted to do those cards. In the end what I did was write each child's name on the envelope and he copied it to the card and added a JonJon at the bottom (that's his real name - Jonathan. But no one calls him that, because it's too serious, so it's JonJon to everyone except me. And you). He wrote 25 cards, most of them were even legible. It is an incredible achievement for him to be able to copy from a different paper without making a mistake and without getting tired. On Tuesday morning we took the cards to school to hand them out. I thought he would want me to do it, but I was wrong. He was so proud of them, he told every child he saw, he showed the teacher, and he handed them all out by himself.
It always amazes me how much inspiration we can get from our children. How much better they are than us at dealing with difficulties (most of the times), and with Yon, how he doesn't let anything stop him doing exactly what he wants.

I now have three lists ready, one food order for the 21, a complete schedule including Google-Calendar invitations, and a set menu for dinner. And all I am missing is one gift that is on its way and 2 books for Ron.
Because if Yon can do it, I can do it too.

I am linking it for the last time this year (!) to the wonderful Small Steps Amazing Achievements at Ethan's Escapade. Have a wonderful Christmas Jane :)
To the equally lovely Motivational Monday at Pinkoddy, who is always inspiring me to do better :)
To Victoria's wonderful #PoCoLo. Have a very merry Christmas!
And to Jaime's Magic Moments over at The Oliver's Madhouse. Merry Christmas :)


 

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