Why a diagnosis?

I've been thinking about this alot. Why do we need to diagnose Boeboe with anything? When she had progressing incontinence, I needed a diagnosis because it would lead to an operation and hopefully improvement before it became a permanent dissability. So I chased the diagnosis. I wanted it, I needed it, and it meant the world to me when I got it. We got her operation and we got the improvements and stabalising of her symptoms that we needed.

So why do we need another diagnosis? Would it really mean anything to us? To her? Would it help with anything? What difference would it make, in my or her world, whether she has a label or not?

A few days ago, my son wanted to know what is Down Syndrome (there's a child in their school with it). I tried to explain to him, and told him exactly what it is. Trisomy 21. Genes that's duplicated. Genes that causes some things to be just a little different in some children. And I told him we suspect that Boeboe's problem is based on similar problems with some of her genes.

And I realised. That's why I needed a diagnosis. Because of understanding. Because of ME understanding her better. Because of her siblings understanding her better. Her teachers. Her extended family. Her friends. Mr N has so many times looked at her in frustration, because she doesn't act her age, doesn't understand simple concepts sometimes even after it was explained to her, or doesn't speak in full sentences (this one has always baffled me). He needs to know that we should handle her issues with kindness, not frustration, because it isn't she. She doesn't chose to talk in half a sentence, expecting us to understand her. It's because she has limitations. The number of times I've gotten angry.... because she would say something like "Mommy, today in school jumped". That's it. Then I have to try and figure it out, drag any more words or explanations out of her, while dealing with her frustration because mommy doesn't understand and her inability to comprehend the fact that she hasn't used a complete, sensical sentence. It was always OUR fault, me, daddy, Mr N or whoever's fault for not understanding her. She never realised it's because she left out some words. For example, she might've wanted to say "Mommy, today in school Jan jumped on my toe." Or "Mommy, today in school we jumped rope and I loved it." So whatever you assume, could be totally off the mark and that frustrated her to no end. For the first sentence, I would react with sympathy, causing her to be totally confused if she meant the 2nd. Why would mommy be sad that I could jump rope? For the 2nd sentence, I would've acted happy and proud of her. Which would've frustrated and angered her for my apparent lack of sympathy that Jan jumped on her toe! And for some reason, you very, very rarely could get any MORE words out of her to complete the sentence. It's as if whatever block caused her to leave them out, stays in place doesn't matter how you prompt or guide her to an answer. And she would just not see what we see. She will not realise that she's left out words. It frustrated me and Mr N to no end. It usually happens in the car after school, which is why Mr N formed part of this. He always tried to help me make her see that her sentence is incomplete. So maybe, with a diagnosis, will come understanding. For me, Mr N, daddy and whoever has to deal with her. Understanding, and sympathy.

When we had no diagnosis before her tethered cord operation, I was impatient with her. I couldn't handle her or the symptoms. Once we had the diagnosis, I had all the patience and sympathy in the world. We tackled every day best we could, without forever waiting for that magical "improvement" to happen. For that magical light that'll switch on in her head/body to signal to her how to control functions that should be controlled. The frustrations of daily life was much, much better, because I didn't wait for it to get better any longer. Until, of course, after the operation.

Now, we're back in the same boat. Well, almost. We're looking for a comprehensive diagnosis that can explain Boeboe's learning dissabilities, her speech problems, her physical problems and her psychiatric problems. Something that can encompass all of that. Just like the tethered cord explained her feet and leg symptoms, her bladder symptoms, her colon problems and her incontinence problems. It explained everything that we wanted answers for at that stage.

So why else would I need a diagnosis?

To know if we should expect so much from her. It's back to that post I wrote, long long ago, about the ballet. (Here) If you KNOW what's wrong, do you expect as much of your child? Like you would've expected from a child who did NOT have the same problem? Before we knew Boeboe had a tethered cord, we expected her to suck it up and cope with the pain ballet brought her. If we had known she had a tethered cord, at the VERY least, I would've gone to the teacher and explain the situation to her. Because she was forcing Boeboe to do things even when it physically hurt her. Was this fair? Should you expect the same from a disabled child, than what you would from an abled child? No, I don't think so. It's not fair towards that child. Yes, of course you should still have high expectations, and of course you shouldn't molly-coddle your disabled child, and make her situation even worse by letting her know you have zero confidence in her abilities.

But how fair is it to expect the impossible from your child? And when she fails (you), she feels even worse? Shouldn't you lower your expectations to what's in her reach? Still expect her to do her best, to try out everything she wants to. But not expect the impossible from her? Certainly, you won't expect a child in a wheelchair to participate in the school's 60m running contest? Or expect a child on the autism spectrum to deliver a speech in front of the class?

If I know that Boeboe has a syndrome that's influencing her mental capabilities, I will stop expecting her to be a normal, average child in school. I will go to the teachers, and I will tell them to lower their expectations, to boost her more, to be proud of what they achieve with her. Just like I will be proud of all her achievements, and not feel like she's failing (even when she does compared to the other children). Because it won't be about passing and failing for me anymore. It will be about accomplishing. I'd be grateful for every bit of progress. I will still be driving her to do her best. I will still work my *ss off to provide her with every opportunity to do her best. I will still expect her to work every bit as hard as she does now. But then I'd sit back, and I'd marvel at what heights she achieve. While at the moment, once we've worked our butts off, I sit back, and I despair at how little difference it has made. Or how hard we had to work to achieve what comes seemingly natural to other kids (Mr N included). It's not easy, to feel like she's failing. When in fact, she might be accomplishing so so much. It's a mindset change, and it's unfair that I need a diagnosis to do the mindset change. But until you're in this situation, you won't realise how difficult it is, to lower your expectations of a child, when there's no diagnosis telling you if it's necessary or not. If I lower my expectations, when there's no reason, wouldn't that tell her she shouldn't achieve anything much, because mommy isn't expecting it? But if I don't lower my expectations when there's ample reason, won't she always feel like a failure, never ahieving what's expected?

Another very important reason why I would want a diagnosis, is also 2-fold. The genetics behind it. A diagnosis could influence the health of my other kids. Or rather, the treatment of the other kids. Like Monkeyman's heart problems. What if it has a genetic cause? Answers for Boeboe might help with answers for Monkeyman. I still have the "why" in the back of my mind. WHY would one average, normal family with no apparent issues have 4 seemingly normal, healthy kids, of which 3 of them then has been diagnosed at age 5 with a problem. Every time a different problem. But every time at age 5, and every time it was a big deal problem. Not something minor. Why why why? Could there be so much coincidence? I don't think so...

And similarly, what if Boeboe has a syndrome, that could be carried over to her children? What if a diagnosis can help her be proactive when she herself wants to become a mommy? This reason is one of the most important ones.

Do I believe there's a cause? Do I believe there's still an underlying, undiagnosed problem? A syndrome or something? Yes. I do. Without a doubt. If they can't find it, I'd still believe it's there. I'm convinced of it. I feel it. I instinctively know it. I've always known it. When she didn't do well during pregnancy. When she didn't grow as she was supposed to. Didn't move as she was supposed to. Didn't react like she was supposed to (like triggering labour when she was unable to get full nutrition from the placenta as the gynae said she would). When she was on the verge of going downhill fast after birth, and reacting like a 34-weeker baby, and not a 37-weeker. When she had sleep apnea as a tiny 2-month old baby. What "normal" baby stops breathing for no apparent reason night after night?? For months? When she didn't smile at us at the normal, expected time of 6 weeks. Not even at 8 weeks. Not even at 9 weeks. I knew it. Then.

When she never registered or reacted to her environment as a baby until 4 months. I knew it. My sister knew it. She voiced it. I shrugged her off. When Boeboe didn't sit at 7 months, I knew it. That was my limit. That's when I took her to the OT. Not for a diagnosis, but at least acknowledging we needed help. When she didn't talk at age 1 or even age 2. Or was unable to make people understand what she said at age 3-4. When she refused to speak at school. To her teachers, to her friends. I knew it then. The teacher knew it.

When she threw those horribly abnormal tantrums for hours and hours. When she would throw her body down on the floor, caught up in her violent anger and unable to feel the pain she inflicts on herself, on her brother, on her parents. When she didn't cry any tears. When her face was all screwed up from her pain, when she would rub her eyes furiously as if the buildup of the non-existing tears is too much, when she would look at me with her eyes shining from a wet film, but no tears would roll down her cheeks. I knew it. Then. When she had absolutely no embarressment because of her accidents. No clue that her friends might/will realise. When she chose to play on at home in wet pants, rather than loose even a minute of play to go and change. Even at an age appropriate for such things. I knew then.

When she would not learn from her own mistakes. When we asked the OT why she would jump off the couch, hurt herself, cry bitterly (without tears!), and then just climb right back up. Jumping off again, hurting herself, cry, and then, AGAIN just climb back up, jump off, hurt herself and cry. Until I step in and tell her off for doing something that causes her physical pain. I knew then.

When she would act abnormal to certain situations. When she acted illogical. When me and daddy looked at each other in exasperation, shaking our heads in our surprise, at each other. When we gave each other a knowing look, a knowing smile, because of Boeboe's idiosyncronies. We knew. We've always known. We always said "she's abnormal". It's a horrible, horrible thing to say of your child, and when people queried us, or berated us for being so mean about our own child, we'd say "but it's true. What else can you say about this?". Because her behaviour, he remarks, her attitude, her reactions, sometimes they were nothing other than "abnormal".

When we had her evaluted for a personality disorder, because she's such a Dr Jackal and Mr Hyde. She didn't have a personality disorder, then. But we knew she had something. We knew it all along, but we had no resources, no reserves and sometimes no stamina to face it. After the uphill battle we faced getting her tethered cord diagnosed, we couldn't face anything anymore. We were done. We just wanted to get on with life and ignore all of this. For once, we just wanted to feel that she's normal. That she just reacted strangely all of these years, due to the tethered cord and the way her bladder/feet made her feel/react. We just wanted to believe everything will turn out okay for her. That she'll be a teacher one day, marry a good man, live on a farm filled with animals, and have 2 little boys and 2 little twin-girls of her own. That's all she wants out of life. And we were determined to give her that.