How much is the right amount of disabled?

How much is the right amount of disabled?

posted in: Special Needs Kids | 9

In the past three weeks I was bullied online, threw out my back, had an inflammation in my bad knee, and had the flu.

And I got an email from the head-teacher at the new school that “we need to talk”.

I have no idea how normal people react to an email from school, I reacted in my regular way – calling Hidai and sobbing hysterically on the phone. I think it’s a perfectly acceptable reaction to an email, especially when you have been on really strong pain-meds for a week. We immediately sent them an email back, saying of course we’ll come, but why do we have to? Is there a problem? Apparently this school is not yet accustomed to dealing with really anxious parents, so they don’t know to open every email with “everything is ok, we just….”, so they had to send us a second email saying it’s ok.

But it wasn’t. We arrived at the school an hour before our meeting because we have a very bad track record of being late in this school, and sat down for some hot tea and miserable self pity in the cafe next door. The head-teacher was 20 minutes late and in a very bad mood when she met us. At least the kids stayed outside and it was just Hidai and myself in the room, having to sit down through half an hour of a “you are bad parents” talk. I love these talks. I missed them so much when we were on the road and Yon was in homeschool that I tried to give myself one every other week. Without a doubt it’s one of the best parts of having a special needs child.

I don’t know why I didn’t see it coming. The kids did their tests for the school, and both of them passed with flying colours, but all we got was a “Ron did fine”. Sure, because they came in after a year of homeschooling with no formal tests and set for your test without getting a list of the material in advance or a chance to revise, in a noisy office with people constantly go in and out. Plus, for Yon, he left Berlin towards the end of year 1 and got the final test for year 3. And they both got more then 90% correct on their tests, but all it’s worth is a “fine”. Because, it doesn’t matter that Yon solved his maths, spelled everything correctly or gave correct and neat answers to most of his work. What mattered was that his handwriting (not the content, just the handwriting) in his essay was bad. And it was. I can’t defend his handwriting there, it was really bad, because when he doesn’t pay attention and really concentrate his handwriting is horrible, and he really didn’t want to write the essay so it was one of the worst example of it you could get (and it is still better than Hidai’s, and quite close to Ron’s when he was that age). On the other hand the rest of the test was written nicely and cleanly, but nobody cares about that. The handwriting in the essay had led to the whole test being “a problem” and the fact that the teacher (at least we think she is a teacher, her qualifications were unclear) who went in the room a few times “saw that he was finding it hard to deal with frustration, and banging his hand and head in the air” led again to him having “a problem”, which the head-teacher of course saw immediately when we walked in the room for our first meeting and is something we have been unaware of and should deal with as quickly as possible.

So my child, who is partially blind, who has Asperger, who no one believed could ever read or write properly and will only be able to work through typing, who speaks three languages fluently (and the basics of a couple more), who can play two instruments, who have had friends wherever we were, who has learned the material for two and a half school years by himself, who just moved a country and a house for the millionth time, who was (and still is) under an enormous amount of stress and anxiety, who has only done one real school test his whole life, who you only seen for 30 minutes in an office meeting, who just passed your test, has, or is (depending on how nice you want to be), a problem. Which we, as his parents, have neglected and are refusing to admit.

I don’t know why I was even surprised. His whole life we are fighting for Yon because he is never “the right amount of disabled”, he is usually “not autistic enough” and “can see everything” because he goes to a regular school, doesn’t have a special aid, goes on trips, rides a bike, moves countries, you name it we heard how “real autistic kids” can’t do it, which means we are either imagining or amplifying his problems, or the more usual – it is all a result of bad parenting. And on the other hand we have the “he is too autistic” and “too blind” for a regular school, for understanding what is going on around him, for playing outside, for anything and everything. The nice people on this side of the map look at us as if we are not giving him the treatments he needs, don’t care about his emotional state, don’t parent according to how you should parent an autistic child (not one of them really knows how you are supposed to raise a blind child, but I am sure if they did we would be doing that wrong too), and don’t want to acknowledge that we are raising a disabled child. You know, bad parents.

No one cares about the amount of time and efforts and thought that goes into everything we do with him or for him, but even more infuriatingly, no one cares about how much time and effort Yon puts into everything he does, how hard he works to accomplish things that we think are so easy and mundane. Maybe other people shouldn’t care, I don’t know. It is a fine line we walk on between giving him special treatment because of his disabilities and demanding that he be like everyone else, and if it’s hard for us to always find the balance maybe it’s unfair to demand it of others, but where does that leaves us? Always having to fight for him between the not autistic enough or too autistic labels.

We made a conscious decision not to look at him through his disability, not to raise him to see only what he can’t do but instead to believe he can do anything he puts him mind to. It’s a coping mechanism that saved us from having to constantly live in the depression and heartache that comes with the DLA forms, the endless doctor visits, the school meetings, the people who take a step back when you tell them. I have no idea if this method will prove itself wrong when he is older, I have no idea if the gap will grow bigger as he grows older, but I do know that for our sanity and his, for our ability to live as a family, I can’t do it differently.

Yet we have to sit in so many of these meetings and hear other people belittle us and Yon, trying to take away his independence and everything we all worked so hard to achieve, because you know how it is – you are only the really horrible parents, what can you possibly know? Let the professionals tell you what is best for your child. After all, unlike us, they know best, and only has the best interest of the child in front of them. That is why the answer to Yon’s handwriting and frustration situation is a one-on-one aid. A private one-on-one aid of course, who will help Yon and also the rest of the class, because after all he doesn’t need her all the time, so why not make the life of all the other students and teachers so much easier. But she is not at all trying to make us pay for a teacher’s-aid. No, it’s just that if Yon gets distracted in class, as she is sure will happen (how? how can she be sure?) there will be someone to say “Yon, pay attention”. Because you know how it is, the teacher can’t be expected to really focus on each of the 20 kids in the class. And if he isn’t distracted? If he is able to follow instructions? Oh well, then she can help all the other kids whose parents were not required to get them a special helper. A win-win situation. What you don’t think so? Well that’s because you are bad parents who refuse to see their child’s problems and don’t want to fork out the money that can only benefit him. Because she is only thinking of him, and we are only thinking about our money and about burying our heads in the sand.

We ended up with buying a special book for kids with learning disabilities to work on the handwriting (how much help it is with his handwriting, I am not sure, but he likes it at least so it’s not too bad) and an agreement to take him to do a new Asperger diagnosis, from a Maltese educational-psychologist whom she trusts, that will say Yon is not too autistic to go to school, but will recommend a one-on-one aid (how did she put it – go and see, she might say differently, but I am sure he needs one).

I don’t know why it affected me so much, this unpleasant talk with the head-teacher. I left the school shaking and shaken, and still had to explain to the kids what we talked about, how their tests were and what we have to do now. I barely managed to keep it together until we got home before I fell apart completely. It might be the pain killers (I have been taking a lot of drugs these past three weeks), or the fact that she is making me look at him in that way again, or that she is so quick to judge him and us, or that she is stripping away everything we have achieved for a couple of things that still needs work, or that she is throwing me back five years to one of the hardest, darkest, loneliest times of our lives.

It really doesn’t matter what it is that makes it so hard.

I have no idea why I didn’t see it coming, it isn’t as if any other school treated us better – in Berlin we were constantly on probation, in London we had these meetings every two weeks or so. And the truth is, we wanted to update Yon’s diagnosis anyway (not because we think they will reach a different conclusion, just because we did it four years ago and a lot has changed), and even though it is never fun to hear, it is not as if it will be the shock it was last time. What can they tell us that we don’t already know? Already dealing with? Already losing sleep over? And besides, the educational-psychologist sounded very nice on the phone and I am sure she won’t recommend anything without doing a few school (and class) observations of Yon.

It really doesn’t matter what it is that makes it so hard. It just matters that it is. So damm hard.

Oh yeah, and happy birthday to me.

Follow Orli:

Orli D., wife, mum, blogger. Not always in that order. Loves my family, writing, and chocolate. Not always in that order. Blog incessantly and honestly about SEN, Ocular Albinism, Vision Impairment, Gifted kids, my kids, parenting and anything else that crosses my mind. Lives life as an expat in Malta, and trying to find my way in this modern life.

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9 Responses

  1. mara

    Do not allow judgemental comments about your son and you as parents pull you back. You know yourself and your family better than anybody else. You are a wonderful family and you have beautiful boys.. I have followed your journey through your blog and you amaze me.
    Keep your head high.. it may be hard at the moment but you will get by.
    Happy Birthday!

    • Orli

      Thank you Mara for so many things – for taking the time to read my post, for following our journey, for the kind words and for reminding me that to hold my head high and not let anything or anyone drag me down.

  2. Maia Blank

    I still remember you well. And I knew you good enough to say that you are a beautiful person. I loved talking to you. And I don’t talk much (I find most people quite borring). I also know that you are a great mother. And I have a question also: don’t all we have our special needs? Aren’t we all a special needs person?

    • Orli

      Thank you Maia, for all your kind words and lovely memories you brought back to me of all our afternoon talks 🙂

  3. Sara Schultz

    Olá (Hi), Orli! Happy Birthday. All the best!
    Well, I would like to share the experience I had with a boy I met in India when we lived there for 2,5 years. I’m Brazilian and my husband German. We have a daughter in school now in Brazil. We lived twice in Germany and India.
    We met a very nice Brazilian family in India with 2 children: one girl and the boy-who was diagnosed with Asperger. The mother (my friend till today) had lots, I mean lots of problems with him in schoolS. Changed at least 3times during their period in India. Besides relationship problems with his friends in our small expat community.
    Summarizing, today his a handsome, gentle young man, living alone in a city nearby his home, studying in a good university of his choice, which he passed a very difficult and disputed test.
    So, now things look hard and heavy, sure, but take it easy. Follow your feelings as mother. Help in what you can, of course, but don’t take these opinions too seriously. Only you and your family know better what he needs.
    Good Luck!
    Cheering for you guys!

    • Orli

      Olá Sara! Thank you so much for taking the time to write you amazing comment.You have no idea how much I appreciate your it. It’s stories like this that give me the strength to keep going and keep hoping it will all be worth it in the end.

      • Sara


  4. Ali

    Happy Birthday Orli

    • Orli

      Thanks Ali!