Family Friday Update

We saw the pediatric pulmonologist who specialises in bio-transformation something. I like her. A lot. Firstly, not only did she NOT make any comment, least of all negative, assuming or patronising, about the fact that we took Monkeyman to 3 cardiologists. No, instead, she asked us to take him to a fourth!!! Now, if you've been in my/our shoes, you'd know that going to the 2nd was very difficult for me to do. Going to a 3rd was really against my grain. And for that decision, I've had to take ALOT of flack. From online friends/communities, from family, and the worst comments and looks - from doctors and others in the medical community. I am honestly sooooooo tired of people doubting the way I go about all of this, and the necessaty of it. Why do people find it strange that we would want to know what's wrong with our child after six years? Is it really so strange to believe that we found 6 years LONG ENOUGH to see if it'll get better on its own? Or if it's really such a big deal? Or if it's not just a personality thing? Do you know that my child has a little blue vein, that appeared out of the blue one day, almost a year ago, that goes light blue, almost dissapearing when he feels good? And that when he feels tired, it becomes very obvious and darker and more prominent? And when he's really tired, it's like someone draw on his face (from the corner of his mouth to his chin) with a dark blue marker?

Do you know that when he is active, he turns pale? Pale enough that you can see how much the skin color on his face differs from his neck and chest? Even the doctor noticed it today! Do you know that when he tires, his face changes from a happy, smiling little boy boy with large, open eyes, to a boy with a withdrawn face, eyes half-mast (half-closed, as if it's too difficult to keep them open)? Do you know that his mouth contracts to a little button hole, about half the size, from the effort to keep going? Do you know that his eyes are downcast about 50% of the time when he's tired, unlike when he's not?
Do you know that when he's tired, he sighs with almost every sentence he speaks, unlike when he's NOT tired, when he NEVER sighs (so it's not a put-on thing that's part of the way he speaks). Do you know that he walks erect when he's not tired, but when he is, his shoulders hunches forward?

Well, I do. I know it. Intimitaly. I see it. On a daily basis. I know and recognise the signs without even being conscious of it anymore. I've been recognising the signs ALL OF HIS LIFE. I have had 2 other children, and now again another one after him. None that were like him. I can see the difference. It's there. It's real.

You may not see it. I get that. I understand that. You may look at him, and you will miss the hunched shoulders, the sigh in his voice, the monotone, the dragging of the feet, the half-lid eyes. I understand, To you, he might look like a normal, happy little boy playing. You might not notice him sitting down while playing. Or be present when he tells you that he didn't play with a certain friend that day at school, because the friend was playing too actively and he couldn't keep up. You might miss seeing him crash after a visit, or when he needs to recover from something like anaesthesia or an illness.

I'm his mother. I know him. No one knows him as well as I do, except his dad. We see it. We feel it. We live it. Why doubt us? It's not me deciding, oh, he's tired, let's chase in circles around doctors. We're his parents. He's our responsibility. And we take that very, very seriously. Don't you?

So, if you can accept that we KNOW it. Do you really believe it's okay for us to leave it? Do you really think you would've left it for longer than what we did (6 years)? When you see your child suffer at school, and from being at school, would you leave it? For how long? Until he really can't cope anymore with the workload that comes with the higher grades? When will you decide your child needs your help? Can you accept that we've decided that ours needs our help NOW. Not next year or in another 5 years? But now. And understand that we're doing the best we can. We're NOT running from one doctor to the next like headless chicken, even if it might appear that way. We're making conscious, thought-out decisions, together, as husband and wife, as parents. And 90% of the time, the doctor we go to, was REFERED by another doctor. Like the pediatrician that said something to this effect: "I really, really urge you to go to this pediatric pulmonologist. I want you to go to her. I believe she may be able to help your son."

Would you ignore such a request from your child's pediatrician? So why is it so hard to accept that we need to do this?

Sorry, I went on a looooong tangent there. Back to the appointment. So yes, she wants us to go to a 4th cardiologist. The irony, LOL. Anyway, this one specialises in Pompe disease. And such things. But for now, I don't think we're going to go down that route. I'll keep it in mind, but honestly, to go to a 4th, pay another almost R4000 ($400) to see someone about a specific syndrome...I don't know. I don't believe it's necessary at this moment. I might research it in the meantime. ;-)

Basically, the doctor said some good things today, and some worrying things. Firstly, she does not believe her bio-transformation medication will help Monkeyman at all, and it may even harm him. Because from the picture she got after asking us A LOT of questions (we were there for 3 hours!), she's pretty sure that he has a mitochondrial disease. Exactly as the (2nd) cardiologist believed. She referred us to the exact same specialist and said she'll take her own child to that doctor if he had these symptoms. So, it seems like we can expect one of 3 outcomes in the end. One is that they can pinpoint the problem, and treat it by medication, diet, etc. Second is that they cannot pinpoint the problem, because there's a long list of mitochondrial problems that doctors just haven't mapped and being able to get to the cause just yet. Maybe then they'll find it 5 years down the line, or even 10 years down the line. If we're lucky.

Lastly, and most scary of all, is that they could find the problem, and it's not treatable. Like ALS (what Joost van der Westhuizen is suffering from). She says the little cells in the body dies because it doesn't get the energy from the mitochondria that it should get. So basically, that's what he has. Now she's not saying that Monkeyman has ALS or something similar. Not at all. Just that that could be the devastating effect of a mitochondrial disease. And Monkeyman already shows signs of deterioration, like the fact that the heart took strain, and the fact that his liver tooks strain (it's a bit enlarged and palpitating it made her worry). She wants to take a biopsy from his muscles, but says that we first need to see the mitochondrial specialist, because it's easy to screw these biopsies up if you don't know exactly what you need. And she doesn't want to put Monkeyman through anaesthesia twice. Especially since the fact that anaesthesia always throws him for a loop, is a mitochondrial sign. Apparently, it's a blazing, neon-lighted sign. :-( Who knew? At least now we understand why anaesthesia is so very, very hard on Monkeyman. Why it took him 2 WEEKS to recover from it the last time, when he only got less than 30 minutes of anaesthesia for the adenoidectomy. Apparently the anaethesia medication is processed through the liver, and his liver is suffering, so it has an adverse effect on the body and its energy generators, the mitochondria.

OK, that was a mouthful. Basically, she confirmed the fact that there indeed is something wrong with our little boy. And it has started to attack/damage his liver. So yes, our intuition WAS NOT WRONG. But I wish it were. :-( I would much rather be wrong, aspergers or not (apparently aspergers people hates being wrong, just like I do, :-p). In this case, I really wish it was nothing. But it isn't.  When my husband asked her how far and long do you keep on searching for answers, she said something to the effect of as long as it takes, but that this next specialist really will bring at least some answers and we have to go.

The other bad news, is that she too, says that it's obvious that we're dealing with a whole family with a common underlying condition. And she wants us to take Boeboe along to the mitochondrial specialist, because she believes that Boeboe might be the perfect "test subject". I can say and write that objectively, until I realise - that's my DAUGHTER you're talking about. Then I just want to cry. But I see her point. Boeboe obviously got hit the hardest, with whatever is wrong with us/our children. She manifests the most symptoms and birth defects, so it makes sense that it should be easiest to find the problem in her. Oh man, I don't want any of my children to be test subjects. :-( They're just little kids!! I just want to grab them, hug them and close my eyes and forget about this whole darn issue.

But I can't. She said that chances are very good that Peanut has the same problem (sniff sniff, now I'm really crying). Because of a number of things - the fact that she couldn't achieve good neck control for 4-5 months after birth. The fact that she couldn't bear weight on her legs when she should've. And most of all, the fact that she refused to move in my pregnancy. She was active from 18-25 weeks. Very active. And seemingly overnight, she stopped. She didn't move 10x a day. If she didn't get hickups every day, I might not have felt her at all on some days. The gynae even once told me that I'll have to prepare myself that we might only find out why after the pregnancy. At birth, and that it might even be something like her being paralysed in the legs. Because she did not do any somersaults, kicked out, stretched or turned except the once when she moved into the head-down position. For about 12 weeks she layed with her head tucked underneath my liver, her legs curled up towards my left hip/side, and she didn't move apart from moving her arms and small movements of her body and head. I was sooooo happy at her birth when she kicked out and moved her legs. Aparently, this is another huge, glaring, neon-sign about mitochondrial disease. Again...Who knew?!

So the doctor today said that maybe if we find out what's wrong with Monkeyman and Boeboe, we might be able to help and support Peanut from early on since she's still so young. So we might be able to prevent some damage from being done, who knows. But it's worth our effort and money, to find the answers to the "what's wrong" questions. Even if only to help Peanut.

Now, I'm not yet at the point where I want to believe there IS something wrong with Peanut. NOT AT ALL. I can't face that. Not yet. So for now, I'm ignoring that possibility and concentrating on only Boeboe and Monkeyman. I need to be able to stand upright, and believing that at least three, possibly all my kids have something that could be devastating to their health...it really is just to much to bear. So I'm not going there.

To the easier parts of the appointment. She says that we must definitely do a sleepstudy. Something we've been asking for for a YEAR. We asked his pediatrician, she said he would've snored. We asked the cardiologist, she said it's traumatic to the children. We asked the ENT, he said it's difficult to do in such young children, and besides, the pulmonary hypertension would not have reversed, if he still had obstructive sleep apnea. So we stopped asking. This doctor says she'd rather sit with a "there's nothing wrong" sleep study report in her hands, than a "we don't know". Precisely how we feel!! She says one parent stays with the child all night, so it's not that traumatic, and the medical aid covers it. Also, they look at his oxygen levels all night, and take a partial (not complete) EEG, which might also be good to have with his older brother's history of epilepsy. She already emailed the doctor working with that, and her people has phoned us. Wow. That's quick. So we just need to confirm a date and voila. Impressive.

The second thing she picked up, was that she heard "damage" or something in his right lung. She says that it's a typical sound and pattern of inhaled reflux. Aspiration. Wow. Another lightbulb moment for me. Of course! She confirmed it with the x-rays taken over 6 months by the other cardiologist, as well as his baby one, and said it's clear on them, especially on the right lung. And that's what the cardiologist picked up on on his lungs, but couldn't tell us what was wrong! She says his GERD is much worse than what we believed. She has upped his dossage to another 10mg, given in the morning. So he's on meds twice a day for it now. And if that doesn't work, she's going to prescribe a low-dossage cortisone pump. She explained that his little airways contracts because of the inflammation damage of the aspiration. She administered cortisone after his first lung function test, and then did another one. The cortisone made a 17% difference to the oxygen level or something like that (I didn't understand all the values she showed us). It did, fortunately, seems to show that he doesn't have asthma. Which is a relief knowing for sure, because it did play on my mind once or twice, because the cardiologist thought there's something on his x-rays, and we have a family history of asthma.

So after waiting almost a year, we now know what's up with his lungs. It's a relief to know. So at least that's a "good" thing of this appointment. Actually, I'm really glad we went. This doctor seems like a do-er. she tackles the problems and organises what's needed. So asthma is excluded, his lung problem is diagnosed, she picked up the fact that his liver is suffering, she organised a sleep study and she's going to talk to the mitochondrial specialist herself (turns out they're really good collegues and knows each other well, and even works together in the same clinic in the same state-funded hospital every couple of months). I'm grateful the pead stumbled across this doctor, and urged us to go. It feels like we made huge leaps of progress, in just one visit. Instead of with the cardiologist who saw us for 6 months and just kept on taking bloods, x-rays and doing a heart sonar (which was needed, and I'm grateful, but we needed action).

Just a last thought. Having this Aspergers (probably, but really, I'm not going to put that everytime as a "disclaimer". I have not been definitely diagnosed, but I have a psychiatrist who believes that I'm right, and that's good enough for me, I don't need a formal diagnosis when it fits me like a glove, and when I did the same tests that would be done by the psychiatrist). So, having aspergers is still "new" to me. The dr asked our whole family's history, and while listing to all that's wrong with me (glaucoma, gilbert's, etc.), I admitted to maybe having aspergers. She nodded her head, without even flinching or smiling condescendingly. She acknowledged and accepted it without telling me "but..." (fill that in with - "you can look me in the eye", "you look so normal", "you can speak and socialise normally", blah blah blah). I'm grateful that the first few people I've told about this, has accepted it without making me feel worse than what I already do. The psychiatrist agrees, my sister agrees (with emphasys, hahahaha, she's so sweet). My husband seems to agree, my best friend was supersurprised, but also accepted it within minutes. Wow. I might be more clearly "autistic" than what I thought. My friend, like the psychiatrist, did say that I must be very high functioning. Yep, clearly, I am. Thankfully so.

 My brother touched on an interesting point tonight. He wondered whose way is the best (so to speak). My way of trying to find answers and labels for everything that's wrong with me/the kids (can someone say aspergers?? LOL), or my mom's where she just solidly ignored every issue in her children. I'm gonna have to think about this one to be able to reach my conclusion. But I do believe that my children's issues are worse and more life-threatening, than what my mom had to face, which makes all the difference in the world. When you've picked up your 2-month old's lifeless body, face grey, mouth and lips going blue, then you can't ignore their issues anymore. It changed me, those few awful months when Boeboe stopped breathing so many, many times. I don't know how it does not change a parent. As I said before, that's the day I started to take my children's health more seriously than what my mom ever did. Anyway, I'll get back to this point. At this moment though, I'm glad we found out about Monkeyman's lungs, because the dr said it would most definitely have lead to more and permanent damage, and I'm grateful that she picked up his liver isn't doing well, because that could in itself be life threatening. It's not something I would've wanted to take any chance on.

Wednesday Warmer (?)

I need to offload a bit, but it's not really fit to be classified as a warmer - hence the question mark.

I took Boeboe for her checkup at the psychiatrist today. It's always a good visit, to go there. I feel like she understands me and especially Boeboe. She seems to know what questions to ask, and I believe Boeboe answers her honestly and truthfully. Which is excellent, given the fact that one of the autistic traits Boeboe does NOT have, is the complete honesty, LOL.

Well, our daughter's medication is increased again. I feel a bit disheartened about it. Even if I knew that would be the outcome. And I know it's the right thing to do. Still, I wish she could stay on the lowest dose. So, for this exam, her risperlet is now on 1mg. If we feel it's not enough, we also got a script to increase the serta to 50mg (I think). If it works well, we can if we want to, decrease her back to the current dossage after the exam. I'm pretty sure this is going to help alot. Last exam started good, but within a week she was a raging bull destroying everyone in her path, and then sat crying in her room because nobody loved her. It was taxing on us. But what made me realise she needed a bit more help, was the fact that it took her 5 WEEKS to go back to "normal". To what she was before the exam. It wasn't fair to her, us or the other children. So we're hoping to prevent that backlash this exam. I see Mr N avoiding her when she gets like that, while he plays more with her when she's stable. Which is a lovely boost to her self confidence.

Interesting enough, she spoke to the Professor earlier today, and they discussed Boeboe! Always surprises me, though I don't know why, when specialists discuss my children. I find it comforting, in an odd way? That they're not just a number to them. Anyway, both of them are really curious about what is wrong with our children. Both believe it's something that runs in the family, and that there indeed is something. Sad, in a way, but it just affirm my own feelings. Both are still surprised that it wasn't VCFS. Clearly, it must be something really similar, for them to think like that.

The psychiatrist supports the geneticist's idea of rather doing a whole genome sequence than just a microarray. She believes it's really worth knowing, and I got the impression that she's curious and would love to know sooner rather than later, LOL. Though, she understands why we've decided to only look at it end of the year again.

I decided beforehand not to discuss my own issues, even though I believe it might shed light on everything regarding the kids. Firstly, I didn't want to make the visit about me, and secondly, I'm just soooo tired over the years of doctors looking at me strangely because I'm "trying" to diagnose the children (or myself in this case) with something. Basically, I was too shy/embarressed. But then we were discussing the fact that all of us (me, the psychiatrist, the cardiologist, the professor, the pead, etc.) believes it's most likely a family problem that's rearing its ugly head within the kids, so I explained to her what led me to research Aspergers, and how I realised that it describes me. I told her about the tests I took, and the scores I got. She didn't seem surprise about the fact that I believe I have Aspergers, but she did lift her eyebrows in surprise by how high the scores were. So we discussed everything for a bit, and what I took from my conversation with her, is that she believes I may indeed have Aspergers, that I've compensated very well (probably thanks to my mom that was a teacher and knew what to do), that I've learned techniques to "fit in" and compromise and follow social cues and norms (though she laughed at me still interrupting people, LOL) and that she doesn't believe getting a formal diagnosis is necessary in my case, since I function very well. (Just a disclaimer: I'm 40. She does encourage younger patients/people that might have Aspergers, to seek therapy since it can help teach the social cues and conversation techniques that I most likely got from my mom). Wish I could hug my mom and tell her Thank You. I hope I'll be able to do the same for my kids... help and support them turn into functional human beings.

Anyway, so that's my off-load. I wasn't on a goosehunt, imagining things that doesn't exist or looking to find things wrong. I most likely do have aspergers. I feel a bit relieved, because she didn't laugh at me, dismissed me, not believed me or discouraged me. Instead, she encouraged me to use this knowledge to understand myself better.

The second thing weighing on my mind, is that my daughter's medication needed adjustment, and the third (and worst of all) is that our family has something going on that scares me. Mostly for Monkeyman's sake. What will Friday's doctor visit bring? For some reason, it makes me nervous. It's as if we're coming close to answers, and the closer we come, the less I want to know. :-( He's just my baby boy. Our fun, happy, clever, quiet and calm little boy. Our contend little boy. Just happy with life. He just wants to be loved. I feel like I'm loosing him, and it terrifies me. I know, it's just tiredness talking, but it scares me. What is wrong with my little boy?

Onto a better part of Wednesday, some pics of the kids.




Look at our handsome little "doctor"! They
had a "plaster" day at school, to support
a children's hospital.

 

Even battered, she's still beautiful.



She did it all by herself. Just love her
blue eye!



Looks more like a pirate, than an accident
victim, LOL. He fished torn pants and
a shirt that met with a too-hot iron from
who-knows-where out of his cupboard.



They played with the ice in the ice bucket after my little
birthday party. Isn't this pic the cutest?

Beautiful baby girl, with the exact same curly hair that Boeboe
had at age 2-4.

Monkeyman was a bit ill with a tummy bug. He stayed at
home today, and I'm keeping him tomorrow as well.

Medical Monday

I know it should be a "proper" medical Monday today, but I just don't have time to research something thoroughly at the moment. And if I can't do it right, I prefer not to do it. So before getting to a short Medical Monday, first an update on the kids.

It's exam time again. :-( Gosh, feels like yesterday we did last term's exam. So I'm in over my head with summarising. This time not only for Boeboe, but for Mr N as well. He's never learned to properly summarises, and struggles with it. So now I'm doing it, so that he can see how. Next term I'll do it with him, and last term he better do it on his own. This is hard work!! I need to concentrate on Boeboe, but she's done so well last term en Mr N so badly, that I find myself concentrating on him. Not sure if it's the right thing to do. I'd hate for Boeboe to fall through the cracks while I try to help Mr N when he technically shouldn't need assistance. Isn't it just crazy that the work is SO much, and SO difficult, that a very intelligent (most definitely way above average) boy needs parental help and support at age 13 just to PASS??? I just don't get it. Honestly, there's something very very wrong with our educational system. And (or) with our school.

End of this week we're seeing a pediatric pulmonologist who on the side, has an interest in bio-transformer markers (or something like that?!). According to the peadiatrician that referred us, this is our best option because they (she and a few collegues) believes that Monkeyman has something going on at cellular level. So we'll see. Of course, my tummy is already in knots about it, and I feel nauseous. Gosh, I hate appointments! And on Wednesday is Boeboe's check-up with the psychiatrist, and again my tummy's aching because we feel that her medication needs adjusting and I absolutely hate that idea. At this moment, she's "okay". But she had a big dip during last exam, which only got better 2 months later! So if that happens again this time (and I'm already seeing signs less than a week into studying), we're going to face an awful June and July. Sigh. Feels so WRONG to medicate my child so that we can cope with her behaviour! But I also see how much happier she is when she's stable on the meds and not flying off the handle every day. She feels like her brothers hates her, because she gets angry at the smallest things and then blame them. A vicious cycle then ensues. Maybe the psychiatrist can just give us something to tie her over during exam times so that she doesn't have that dip due to the stress and anxiety. Ai.

I turned 40! Maybe that should be my Medical Monday. What happens when you turn 40.... LOL. Well, I don't feel any different. It does make me long for my mom, but that's more because I'm always sad, and when I'm sad, I want my mommy. I wish I could throw this sadness off, but how? When your child may have something fundamentally wrong on the lowest of levels in his body, wouldn't that scare and sadden anyone? I know there's something wrong. I can see it. I'm not a very observant person in general, at all, but I am very good at observing people's signs, especially my children. I won't be able to tell you what someone had on yesterday, but I'd be able to tell you what mood they were in and what signs I saw in them (if they looked ill, sad, happy, etc.)

Same with my children. I know when something's up. I've never been wrong before. I would love to be wrong this time, but I know that there's something that Monkeyman has either been born with, or developed in his first 6 months of life. I can see when he has an off day. Yesterday was such a one again. I wish I could describe it, but I'm pretty sure eveyone's reaction would be "but that's normal for a child", or "maybe he just didn't sleep enough?" or "maybe that's just who he is?", etc. Believe me, I've heard it a 1001 times from family, friends and other people involved in his life. Including doctors. At least we now have the peadiatrician on our side. I'm pretty sure she also believes there's something wrong. The way she structured her phone message. And I doubt if she would've gone through so much trouble, talking to other doctors and searching for what we can and should do next, if she too didn't believe something's up. Anyway, I want answers, and I'll fight for them as long as it takes to get them. Just as I did with Boeboe. But it's NOT easy. It makes me so scared, and so sad. So yes, I'm always sad. And I don't know how to throw it off. I know I need to see someone, but money is a bit tight with all our other expenses.

Anyway, back to yesterday. Monkeyman was really tired. His eyelids hang half-mast all day, he only played for short stints with his visiting cousin (taking a break every now and then to go and sit where Mr N was playing games on the computer, or playing on his tablet). He was pale, he sighed alot, his voice was monotone, his mouth withrawn and tight, and his shoulders hanging. All of the signs that appears when he's tired. He slept for 10-11 hours the night before, like most nights, so it's not that. We didn't give him the vitathion over the weekend, and ontop of that, he stepped on a honeybee earlier the week. I believe it was on Tuesday?! He cried just a little bit, and then lied down to watch a movie. There after he was fine. We gave antihystamine and pain meds. His foot/toe didn't even swell or turn red. Until yesterday! About 5 days after being stung. What's up with that?! The top of his foot is red and clearly swollen. Maybe that also influenced him being tired yesterday. The cardiologist once said that it seems to her like when his body has something out of the ordinary to deal with, his heart struggles and takes a dip in function. Maybe that's it? She speculated that it's because of mitochondrial problems. Urgh, no wonder I'm always sad and worried!!

For interest sake, I'm going to explain how our country's medical support works, for today's Medical Monday. There's more people from the rest of the world reading here, than in SA, and I know it must be confusing to them. Especially as "Medical Aid" in our country is similar to "Insurance" in America, and people in Canada and England won't understand how we can get into a specialist within days or without referral.

Due to our long, awful history of Apartheid, our country is basically split into two distinct groups. The haves, and the have-nots. Those with money, and those without. For those without, the state provides hospitals, clinics, medications and doctors. But, like everything else, the state isn't very good at running things. So state hospitals are renowned for the mistakes they make (basic mistakes, costing peoples' lives), for looooong queues, for looooong waiting periods for things like surgery or scans, and for sometimes not providing all the necessary medication (like pain medication to burn victims - WTF????). So the conditions aren't the best in most state hospitals, as you can imagine. We're not as bad off as some of our Northern countries. And at some things, like trauma, we excell. So much so, that some European doctors come here for training and experience. I guess here they get more than enough chance to see people with knife wounds, bullet wounds, car-crash victims, etc. Sad really.

So, to be able to get better care than that, we have a medical insurance scheme in the private sector. This is called Medical Aid, and there's a number of schemes competing with each other for the millions of members able to afford this care. They all have different options, which you can choose from. The higher level option, the more expensive it is, but the better coverage you get. The lowest option usually only afford the member (and his family, if he pays for them too) private hospital care. Then you can go to a private hospital if you need to be admitted for any reason (illness, surgery or trauma). Private hospitals are clean, well-run (it's a financial business) and has enough theatres, medication and doctors to do all care for any procedure needed. Some is a little more busy than we'd like, for example, to see our "local" pediatric neurologist at our closest private hospital, you need to book an appointment about 4-6 months in advance! Others, like our pediatrician, can be seen within a few hours to a few days (depending on the urgency of the reason).

If you can afford better than just a hospital plan, you get a higher option on your medical aid. This include GP visits (general practitioners). So you don't need to go and sit in the queue at a state clinic or hospital, to see a doctor when you have the flu or strep throat. You can go to any GP anywhere in the country, who is in private care. The medical aid will pay his bill as well as the medications he gives, as long as it's not just vitamins or such (those you pay for yourself). So we can go to our GP (ours is a few km's from our house) any time for any reason. I just phone them, and usually get an appointment within 24hrs or less. We've seen this same GP for 16 years now. It's fabulous, because he knows EVERYTHING about my family. Exactly like I believe a family phycisian should be.

If you can afford a little more, you get the Medical Aid option that allows you to not only get hospital care, and GP care, but also specialist care. This option allows you to go and see any specialist you need to, at any time. Thus, you have neurosurgeons, neurologists, orthopeadic surgeons, geneticists, peadiatricians, pulmonologists, pshychiatrists, psychologists, specialist phicisians, ENT's, Occupational and physical and speech therapysts, etc. at the tip of your fingers. You just call whoever you want to see, and their receptionist will make you an appointment. Most of these specialists, especially in the part of the country where I live in, is the best of the best. The best our country can offer. And probably comparing very well with their peers in the rest of the world. Unfortunately, they come at a price. A very steep price. On Friday, our appointment with the pediatric pulmonologist will cost us R1400 (which is about $140). For comparison - a GP visit costs about $30, a Big Mac is about $3 or $4 (I don't eat it, so I don't really know), a liter of coke $1 and an entry level laptop about $300.

The Medical Aid will reimburse you for these specialists and any tests they order, as long as it's within reason. If you go to a specialist that asks $200 where-as it should be around $140, they only pay the $140. The rest comes out of your own pocket, as it is your "choice" to go to that specialist. I put it in quotes, because sometimes it isn't really. You get referred by another doctor, or it may be your only choice within reasonable distance from your house, etc. But, they're in private care, they can ask whatever they want. Some (most) are reasonable though, and charge what the medical aids will reimburse you. Others charge double or even more than what you'll get back from your medical aid.

The Medical Aid will also pay for all tests, within reason again. Like only 1 MRI per person per year. And only dentistry that's really necessary, not just cosmetic. Most bloodtests. Endoscopic procedures will be fully covered, but you need to pay the first $100-$200 out of your pocket. Etc.

Unfortunately, the Medical Aid also isn't unlimited. Once you reach some set limits, they expect you to pay. Either for up to a certain amount, or for everything the rest of the year (except hospital care, which they'll always cover). Once you have paid for the set certain amount, some will start paying again. Unfortunately, only the highest plans gives unlimited funds then, ours don't. So how ours work is that the first x-amount they pay. Then we pay y-amount. Then they pay z-amount. When x,y and z are all depleted, we have only hospital cover, as well as unlimited GP visits. No specialists, tests or medication gets paid.

So, for this year, we have already spent our x-amount, and we're almost through paying for our y-amount. Then, we have our z-amount left. If I'm not mistaken, this year our z-amount is about R20 000 (about $2000). Not alot. After that, we're on hospital plan. Scary thought, with 2 children needing so many tests and things. And just our chronic medications (Boeboe's, my heart pills and all our reflux meds) amounts to R1500 (about $150) per MONTH. So 20k won't last us very long. And more than half the year is still ahead of us! And of course, the care we get, costs an arm and a leg every month (for our family, it's about $600 per month). Add to that the extra expenses coming out of your own pocket (vitamins and such medications), top-up amounts the medical aid didn't cover for specialists, medication or tests, and you end up paying a huge chunk of your salary per month just to keep your family healthy.

Hope all of this made sense. So that's why we've decided to leave Boeboe's testing be for now, and concentrate on Monkeyman. We don't know how many more tests he'll need to undergo, and how many thousands it's going to be. His last bloodtests were R3000! So goodness knows how much it'll be for this specialist on Friday if she wants bloods. Sigh. The sad thing is that Boeboe really should go for another evaluation with a speech therapyst, and probably some weekly therapy, and preferable with an Occupation therapyst as well. She also desperately needs to see the psychologist, but at $80 a week we just simply can't afford that now. The neurosurgeon also asked us to bring her back and have an MRI taken of her back when she's 11 (apparently girls have a growthspurt between 11 and 13). That's in 3 months' time! We'll probably let that stand over until the new year as well. An MRI costs around R7000 ($700)!

So you can see why I know I need to see someone for my own sake, but won't go. Because of medical finances. I can't spend money we might need for our son later on in the year. So for now, I'm keeping an eye on myself. I know that a mommy that's not well, is not helping a family. So if I see that it's getting too bad, I'll go. But until that point, I'm just hanging in there for now. :-)

Medical Monday

(I've been writing this post for weeks. It's extremely long.)

I hinted at some point that there's some things I've been mulling over in my head, and that I'll discuss it in a Medical Monday post. I finished it yesterday, but lacked the courage to post it. :-( So I'm a day late, sorry. I'm really scared of the backlash this might cause. I'm not sure if I'm up to it. I'm scared, and I'm embarressed. Admitting to something so severe is extremely difficult.

I've come to the conclusion that I most likely have Aspergers Disorder.

I've been "jokingly" telling people over the years that I must have autism traits (don't we all, I thought!), but I never realised that I might actually be autistic. I thought it's quite "obvious" in all people. Until some months ago when in my research about chromosome defects, I ended up with alot of information about autism (it goes hand in hand with defects on the chromosomes). Since Boeboe has autistic traits, I didn't discard the information, but built on it. My conclusion was that Boeboe indeed does not have autism, just like the psychologist believes. Only displays traits. Instead, I got this niggly little voice in the back of my head that screamed something else. That it wasn't Boeboe, but me.

I ignored it, because I was focussed on Boeboe and Monkeyman's issues, and really didn't think I needed such a diagnosis at almost 40 years of age. I also didn't realise that someone can have autism, when they're as high functioning as I am (being able to make a couple of good friends, cope with most social situations, marry someone and raise 4 kids successfully). So I ignored the little voice telling me that I can answer "yes" to everything they list when Aspergers comes up in my research for answers on Boeboe. Until a few weeks ago when me and someone close to me sat talking about the children, and we discussed one of them having Aspergers. I told her that it's not a death sentence, that I most likely have it too and look where I am today.

I said I'll look into it a bit more, and well, there I found myself researching Aspergers as much as with having that child in mind, as having myself in mind. I found the way they (the psychiatrists) test adults. Because see, Aspergers have only been diagnosed as such since 1994. Until then, children (especially girls with it) were just.... different. Or difficult. Parents just had to cope and bite down and raise their kids with whatever issues they had. I turned adult in 1992. So long before Aspergers became a known issue. My mom wasn't the type in any case to look for ANY diagnosis or label AT ALL. She totally ignored teachers when they showed concern about any of her children, she ignored medical issues in her children until they either went away, got better or worse. Only when worse, would she take us to the dr. She herself was a teacher, and a darn good one, so I get it. I understand why she would think - oh well, all kids have issues. Why would she need to label her one child with this or her other child with that? It's not like in our country a diagnosis of something like autism gave you social grants or anything much. So what would the use be? Besides, like I said, Aspergers were an unknown diagnosis, especially in girls, and being autistic usually meant a non-verbal child. Today, there's support, understanding and help. In those days, not so much. Especially not in the country side where I grew up. A label may not have changed life for me much. Except maybe understanding from other family members. Something I did miss and would've appreciated. I'm sure my mom too, she had to defend me and her parenting of me quite often.

Throughout the years, especially while I was little, my poor mother just ignored what other people (teachers, family, friends) said of me, and she just loved me and moulded me into a good and functioning human being. Despite not having a label or support or all the information in those days, she knew exactly how to reach me, and direct me. She was an exceptional mother and teacher. Not only did she most likely raised an Aspergers child, she also raised a most likely severely ADHD child (not me), multiple children with severe sensory defects, multiple children with anxieties and depression, etc. Four of us, all born within 5 years, and all of us with so many "issues". What an amazing mother I had. If I can only be half the mother and person she was...

I grew up being an extremely difficult child. I had many, many tantrums (or meltdowns). One of the reasons why we never took Boeboe to many specialists for her tantrums. We just assumed because I was so bad, she got it from me. So yes, I completely fit the bill for that part of being autistic. I was already in highschool when I at long last got a better hold on my rage, anger and frustrations. Until then, I blew my top probably about once a day. Screaming at my mom and siblings. Stamping my foot. Throwing my body down. Crying for hours in my room. Despairing at how they just don't understand. I was also violent. Reacting violently towards especially my one brother. I used to blame him. But now I'm beginning to wonder how much of it was actually me?

I am/was a very shy person. Like in extremely shy. The one hiding behind my mom's legs long, long after it was still considered normal. She understood, and protected me. My siblings said I was a spoiled brat. I didn't get along with them very much. Only my eldest brother, whom I adored. Only once I was an adult, did I bond with my sister. I was happiest when left alone in my room, to just read. I spent most of my free time (when not sleeping or at school) just reading. Being alone in my room. My mom complained alot during my childhood how I would just withdrew into my room. Sleeping late, reading all day in my room, barely spending any time with them. During weekends, holidays and even holidays home from univarcity. All I wanted to do, was being left alone and read. Escaping into another world. Away from all the stresses of the real world. Later on, with the advent of personal home computers, I started playing computer games. Another world I could escape into, and did so all hours of the day and night. I still do that.

I had friends though. Good friends. Not alot of them, but always one or two. I read that girls on the autistic spectrum do better than boys in this regard. They're better equiped to learn the necessary social expectations, norms and interactions. To copy what they don't understand, and learn to act normally and acceptable. I was also fortunate to be in an extremely small school, with very small classes, because of the small town we lived in. In matric for example, we were 12 children. Ten girls and two boys. :-) I'm sure this is why I was able to excell academically and learned to socialise in small groups successfully.

When I was 13, my mother left me alone in the care of my father and grandmother, for little more than a week. She and my 3 siblings went on a hike that she feared I wasn't strong enough to cope with. Afterwards, me and her spoke alot about why I found that week so exceptionally hard. I lost myself, that week. I went into a deep, deep depression. I was so sad, so lost, so desolate, without my mom. I didn't eat, didn't speak, didn't function really. I lied on my bed and read and cried. All day, every day. It shouldn't have been that hard, for only a week, at that age. But it was. I couldn't cope without her. It surprised both her and me, and should've raised red flags for her. It saddened her, and she felt guilty. The same happened when I was 18 and left school to go to univarcity. I had to stay in the hostel, because it was in the city, far away from my parents and home. Again, I was lost. I cried so much that first few months, wishing to drop out. But my mom made sure I knew it wasn't an option, doesn't matter how much I was suffering. So I stayed, bit through it, and after a year it got better. I would always be grateful to the one very good friend I made. Without her, I might not have survived. But I did, and I started to stand on my own feet and started to make my own decisions. My mom once said that she was really surprised how long it took me to reach that independance. Another red flag.

So while researching everything the past few weeks, I came across the tests that are used to determine if someone has Aspergers as an adult, after being missed as a child before 1994. Some of the tests are the same as is used in a clinical setting (with a psychologist or medical professional). I took as many of them as I could, some multiple times, and each and every one of them told me I most likely have Aspergers. None of them had any doubt, or even much tact in some. For example, the one said:

You scored 120 aloof, 123 rigid and 94 pragmatic

You scored above the cutoff on all three scales. Clearly, you are either autistic or on the broader autistic phenotype. You probably are not very social, and when you do interact with others, you come off as strange or rude without meaning to. You probably also like things to be familiar and predictable and don't like changes, especially unexpected ones.

I just love the way they say "Clearly, you are either autistic or on the broader autistic phenotype". Haha. Yes, clearly hey? Just took me 40 years to realise...

Here's another one:

You are very likely an Aspie

 To the point. I like that. Here's another:

Scores with a yellow background are above the test threshold values. If your total score is above the threshold it may be worth getting professionally assessed.

Much more tact, this one, LOL. All my scores had a yellow background, for every sub-category. And my total score was almost double of the threshold. Oops.

The one important score though, the one used by most psychiatrists, is what they call the AQ scored. There's a bit of controversy in the medical world about what the cut-off for this score should be. It's a count out of 50, and some say the cut-off should be 26 (I think it's the acceptable cut-off currently). While others say that it should be 32, because those between 26 and 32 may have some false positives (testing autistic when they're not really). And that only those with 32 and upwards, definitely have Aspergers. Well, my count was 36.

Another interesting, but not defining or medical-based test, but an extremely thorough and large one, has been the one that gives you a count out of 200. It tells you how many points you scored on the Neurotypical symptoms (thus normal human beings), and how many on the Aspergers side. There's some overlapping, so adding the two counts won't total 200. Well, my score was 143 for the Aspie side, and only 77 on the neurotypical side (a 2nd time I got 150/80). I found the test mildly interesting, but not very definitive, as it was the first one out of all of them that I took. At that stage, I was quite surprised that it indeed said I'm probably on the autistic spectrum, since I never really believed it deep down in my heart. So I thought the test is probably not very accurate. Thus, I asked my husband and Mr N to do the test as well. My husband scored extremely high on the neurotypical (160) and very low on the Aspie score (below 50). Mr N was a bit higher on the Aspie score (which makes perfect sense, if you know him), at just below 90. And on neurotypical, he was just above 120. Both of them had the conclusion: "Both of you are very likely neurotypical". I tested Boeboe at a later date, and she had "both neurotypical and aspie signs", with a score of 110 for Aspie and 90 neurotypical.

This piqued my interest, as it described all four of us quite accurately. My husband is most definitely NOT aspergers, but, he is an introvert, so it makes sense that his neurotypical score would be very high, but with a few "autistic-like" traits giving the score of just under 50 for Aspie. While Mr N is very much like my husband, but with more introverted social issues, so his Aspie score should (and was) higher. But for both of them, the test said they're most likely just normal, neurotypical. Not aspie. Which we know is true. And Boeboe most definitely have autistic or Aspie traits, as already diagnosed as such by the psychologist and psychiatrist. And the psychiatrist did tell me that her first thought for Boeboe was indeed "Aspergers", but both has said she's not diagnosed as such. So having a score of around 100 for both Aspie and Neurotypical makes ALOT of sense for Boeboe. I also tested Monkeyman (on his insistance, LOL, he thought it a game I was playing with the others). He tested very similar to Mr N, which is what I expected. Though, I don't think it's too accurate just yet, afterall, it's designed for adults.

On another test, the Ritvo, they give the following upper limit of "normal" values. It's the one where my total were almost double the threshold. My score is the one in italics.:
Language : 5.5 (and below). Mine: 9.0
Social : 40.4 (and below). Mine: 73.0
Sensory/motor : 19.7 (and below). Mine: 34.0
Circumscribed interests : 14.7 (and below). Mine: 38.0
Total : 80.3 (and below). Mine: 154.0

So I did some more digging into this, and the deeper I dug, the more and more I realised that I fit the Aspergers bill to a t. At the end of this (too long already) post, I'll list some of the signs of Aspergers, and which ones I have.

As much as all of this kinda shocked me, I realised that it also gave me a unique and new insight into why I am who I am, and I don't feel the need to try so hard to fit the mould anymore. I never even knew how much pressure I've put on myself to be "acceptable". To act like other people. Like society expects from us. To only speak when there's a pause. To take turns speaking. To ask people questions. To try and look into someone's eyes at regular intervals (still can't force myself to look up for extended periods, mostly only quick glances). I never realised how much stress a conversation puts on me. How much energy I spent on looking closely at other people's reactions and cues, so that I could respond accordingly. I remember reading books about body language. I thought it was just because I found it interesting. I guess I was actually teaching myself.

So I now understand...

• why I try to steer away from people. As much as I can. All people. Everywhere. Every day.
• Why I can't recognise faces I don't know well (who knew this was a medical "condition" I had!). It even has a name. Prosopagnosia.
• Why I hate social events. Why I feel so stressed about upcoming visits and gatherings.
• Why I absolutely hate my phone. Why I prefer not answering, and rather just listening to the message that whoever phoned will hopefully leave.
• Why I prefer online conversations to real life conversations.
• Why in real life, I'm shy and introverted and not forceful in my communication, quite the opposite of how I can be online.
• Why I hate touching or anyone touching me.
• Why I have difficulty looking people in the eyes and have to force myself at regular intervals (prompted by my books who declared that people that can't look others in the eye, were scaly, dishonest crooks).
• Why I'm highly intelligent with two degrees behind my name, but sitting at home not working.
• Why I can focus on my research (my "special interest"/passion/obsession) to the exclusion of everything else.
• Why I'm extremely honest and almost never lies. Not even to my children, about "hiding" veggies in mince or something silly like that. Or telling them that carrots will make them see better or beetroot would give them red cheeks. I even answer honestly when they ask if a certain procedure (like taking bloods) will hurt. I do not lie to them.
• Why I prefer to be alone, as much and as long as possible.
• Why I prefer spending all my time at home, even weekends and holidays. And especially evenings/at night.
• Why I hate going to the shops.
• Why I hate driving anywhere.
• Why I find it difficult going somewhere I've never been before, or take a road I don't know.
• Why I have this intense longing to go back to the country, where there's not so many people and activities going on around me.
• Why I hate joining in the circle of parents chatting while waiting outside school.
• Why I hate anyone visiting unanounced.
• Why I hate when plans or circumstances change. (Except for cancellations! Love those.)
• Why I can easily ignore my (poor, patient) friends for months.
• Why I have absolutely no desire organising social activities for myself, or my family.
• Why I try to get out of any and all invitations I get, and has to force myself to accept those I get from people important to me (so yes, consider yourself important if I've accepted invitations from you, LOL).
• Why I detest having playdates of the kids here at our home (and usually try to get out of committing to any). Yes, even children intimidate me. I can handle my own. Not other children. 
• Why I sometimes struggle understanding what I read and have to reread some paragraphs. 
• Why I find myself using words and phrases making me sound stiff and formal, especially in English (my 2nd language).
• Why I am what my mother used to call "opstroppelis". It kinda means that I was always swimming upstream. Everyone would say A, then I'd come along and say B. This one has caused me to lose friendships a year ago, and for the first time, I now understand why.

I also get it now why I have so many, many food aversions and issues with food. Now, I understand. Why I can't just eat the darn onions, mushrooms, cabbage, spinach, matured cheeses, etc. etc. etc. The list is looooong. Just writing these down, makes me gag a little. Well, actually alot. Blegh.

It would explain so much, if it would turn out that I indeed have Aspergers. It wouldn't be autism, "just" Aspergers. I'm very high functioning, obviously. I'm extremely intelligent (tested in the very high 130's as a child and as an adult), and I think that has helped me learn and copy the social cues, the little things that might not have come naturally to me. I'm a keen observer, and a good copier. I now get it why I have always said I have a non-existing sense of humour. Especially starkly obvious compared to my husband who has the driest, most beautiful sense of humour ever. I try to laugh, when others tells me something funny. But I sometimes find it perplexing why I should. It's not that I absolutely never find something funny. I've laughed before until I'm in tears. It just takes a lot and a very specific strand of humour to get me there. I'm also "slow" catching a joke, and will always laugh last. And I never, ever tell a joke. Because throughout painful history I've learned that absolutely no-one would laugh. I think I might be putting emphasys on the wrong parts. I don't know, I just know that I can't tell jokes, and I don't know why people won't laugh when I try to. So I've stopped trying.

I also now understand what has happened in some friendships over the years. It really was me. I'm opinionated, forceful, domineering of the conversation, and doesn't listen to others as I thought I did. I tried. I really, really tried. I'm sure some wouldn't believe me, but I did. To be a functional person with autism, you have to try. You have to do your very, very best every moment of every conversation, else you woudn't have been functional. I get it now. I understand now. And all I can say, is I'm sorry. If I'm a friend and acted too forceful or too opinionated or too oblivious in the past. This is the reason I've been stepping back the past month. Away from friends (online and in real life). I thought I'd rather step away than hurt someone. I never knew I really might be autistic, apart from the past few months. It never occurred to me that I indeed, really WAS the problem. I thought I just indeed was always right. And usually, when there's facts, I usually am always right. As my husband pointed out to me once. I'm just oblivious to the social undercurrents. I didn't know. I still actually don't know. How would you know what you're missing, if the very thing you might have, makes it impossible for you to know that you're missing anything at all?

I read this on a blog dealing with adult women with Aspergers, and the following paragraph hit home for me:
"...central to the dysfunction is very poor social skills. But poor social skills means that you are missing social cues which means that you don’t know you’re missing social cues. Everyone in the room wants you to shut up and you don’t know it."

Gosh, that's hard. It really hit home, and it hurts. But I get it now. I didn't realise my behaviour was abnormal. Yes, my siblings hinted throughout the years. Even some friends. But I honestly thought it was them! Clear Aspergers sign, apparently.

So will I try to get a formal diagnosis? I don't know. I'm pretty sure that I have it. It's not a quick search, doing a quiz and diagnosing myself. I've researched and read and delved into this thoroughly. And the quizes I did, is that standardised ones the professionals use. Would it matter much if a professional does one of these quizzes with me and comes to the same conclusion? (That's basically how adult female aspergers is diagnosed, it seems. Some places even allow online-filling in of quizes for diagnostic purposes.) So would a professional diagnosis matter much? I don't know. Maybe, but I doubt it. Except that other people would need that professional diagnosis. Will anyone else believe I have this? Not many. My husband do, my sister do. I haven't spoken to anyone else about it since taking the quizes.

A while ago we were chatting and I told my SIL (sister in law) that my mom pulled my husband aside shortly after our engagement and spoke sincerely to him. Asking him if he's 110% sure he wants to and can take me on and everything that is me and comes with me. It sounds strange, for a mom to do this, hey? I should've realised she suspected more than what I did. Anyway, my SIL asked "Why, what's wrong with you?". So in the future, if I have a professional diagnosis, I can answer: "I have Aspergers." Else, for now, I should probably reply with "I probably have Aspergers.". I didn't, I replied with a laugh and: "I have many issues."

There's hundreds and hundreds of possible signs, symptoms and traits of Aspergers. People will obviously have some of them, not all, and to different degrees. It would bore you to tears to go through so many, so I decided to only list those pertaining to Adult Women with Aspergers. Still, it's a lot, so only scan through it if you need to (or ignore! Then just jump to the very last paragraph of this post.). Here goes:

Appearance/Personal Health

Dresses comfortably due to sensory issues and practicality
This is me, 110%. I never, ever buy things that might be uncomfortable in the slightest. Especially shoes and pants. I don't care how I look. And I don't wear high heels. Ever.

Will not spend much time on grooming and hair. Hairstyles usually have to be ‘wash and wear
I don't groom myself at all. I don't wear make-up. I don't use a straightener. I could never understand why other people would wake up an hour or longer before leaving for work in the mornings. It takes me 10 minutes to bath, get dressed, comb my hair and gather my things. Hair most definitely is wash and wear. I'll comb it, and maybe tie it in the nape of my neck, but that's as far as I go. I don't colour, I don't "do" it, I don't spend time on it at all. I don't even put conditioner on. Though, I do wash it with shampoo at least. ;-)

Eccentric personality; may be reflected in appearance
Yep, see above.

Is youthful for her age, in looks, dress, behaviour and tastes
I actually thought it was a nice complement when people who guessed my age, always guessed between 5 and 15 years younger than what I was. Now, I realise it probably wasn't. :-)

Usually a little more expressive in face and gesture than male counterparts
I believe I'm not as stoic as most autistic people, yes. But really, you'll have to ask other family or friends. I don't much look at my face in a mirror, especially not when speaking to other people. I do know that I don't smile alot.

May have many androgynous traits despite an outwardly feminine appearance. Thinks of herself as half male/half female
Nope, this isn't me at all. I look, act, think and feel female.

May not have a strong sense of identity, and can be very chameleon –like, especially before diagnosis
Again, not me. I have a very strong sense of identity. I'd rather say I'm the opposite really, my mom used to tell me it's surprisingly strong for a child. It amazed her.

Enjoys reading and films as a retreat, often sci-fi, fantasy, children’s, can have favourites which are a refuge
Yes, totally me. I absolutely LOVE reading. Alot of it is fantasy and sci-fi, and yes, it's a refuge, and yes, I have definite favourites I reread yearly.

Uses control as a stress management technique: rules, discipline, rigid in certain habits, which will contradict her seeming unconventionality
Totally me! Been accused many, many times of being too black and white, too rigid, too rule-abiding, too honest, too pedantic, etc.

Usually happiest at home or in other controlled environment
Totally me. Just want to be home. All the time.

Intellectual/giftedness/education/vocation

May have been diagnosed as autistic or Asperger’s when young, or may have been thought of as gifted, shy, sensitive, etc. May also have had obvious or severe learning deficits
Most teachers said I'm gifted and yes, I was/am extremely shy. Not as sensitive though. My sister (not autistic) is much more sensitive than I am. I also had no obvious learning deficits.

Often musical, artistic
Not really. I do play piano and guitar, but I don't really have much talent in it. And I can't draw to save my life.

May have a savant skill or strong talent
LOL, no, not me.

May have a strong interest in computers, games, science, graphic design, inventing things of a technological and visual nature. More verbal thinkers may gravitate to writing, languages, cultural studies, psychology
O gosh yes. I have 2 degrees in Computer Science. I love everything technological. Adore computer and video games. Loves science and especially researching scientific facts. I'm extremely visual in nature and as a verbal thinker I do gravitate towards writing.

May be a self-taught reader, been hyperlexic as a child, and will possess a wide variety of other self-taught skills as well
I didn't teach myself writing, but my mom taught me before I went to school. Not sure about any other self-taught skills. Probably a few, but isn't that true for everyone?

May be highly educated but will have had to struggle with social aspects of college. May have one or many partial degrees
Yep. Have 2 degrees from univarcity, but failed miserably on the social side. Some of it still causes me anxiety, embarresment and heartache, thinking back over it. If I felt like I had a choice, I would've quite during my first year. Fortunately, my mom made sure I stayed put. After a year or two, my hostel room became my refuge and I got used to living on the univarcity grounds. I was even happy there. And when I completed my first degree, I wasn't ready to leave there, so I did a follow up (honors) degree which took one year. Thereafter, I was forced to leave and start employment. My sister helped me with the transition. I would always be grateful to her for that. She housed me, helped me prepare for interviews, helped me dress for them, and helped me find my first flat to live in. My dad bought my first car for me (I had to pay him back), and my mom sent me furniture from their house. My husband helped me find whatever I still needed.

Can be very passionate about a course of study or job, and then change direction or go completely cold on it very quickly
Oh yes. A number of times. :-(

Will often have trouble holding onto a job and may find employment daunting
Why do you think I'm still a SAHM 14 years later? OK, it's not the only reason. But yes, definitely one reason.

Highly intelligent, yet sometimes can be slow to comprehend due to sensory and cognitive processing issues
Yep, that's me as well.

Will not do well with verbal instruction – needs to write down or draw diagram
110% me! Absolutely can NOT do verbal. It HAS to be visual.

Will have obsessions but they are not as unusual as her male counterpart’s
Oh yes, definitely have/had obsessions. Not many unusual ones, I don't think? Currently, for the past 5 years or so, researching everything related to my children's health has been my obsession. When I was pregnant for the first and second time, I obsessively read everything I could about pregnancy, birth and newborns. And I really do mean everything I could. Magazines, books, internet, pamphlets. You name it. Before that, when I was diagnosed with endometriosis, it fascinated me for some reason, and again I obsessively researched it. In univarcity, it was the games (computer) and authors (of books) I was interested in. In school I had limited information at my hands (no internet in those days, limited library, etc.). So I obsessed about books. Reading all of a certain author, for example.

Anyway, I'm sure you get the idea. Being Aspergers with a "special interest" in my children's (and some of my) medical problems, would explain why I obsessively researches all of it. It gets my sole attention and focus, in an intensity that's a bit abnormal (even I recognised this, especially during my hunt for my daughter's tethered cord diagnosis). I won't apologise or make excuses for it, because without that certain Aspie trait, if that's what it is, my daughter would never have been diagnosed and successfully operated on for the occult tethered cord. If that's the reason I may have been dealt the Aspergers card, then I'm happy to be "an Aspie". :-)

Emotional/Physical

Emotionally immature and emotionally sensitive
When I struggle with Boeboe with this same issue, I realise now what I've put my own mother through. I don't think mine was as bad as Boeboe's, but still.

Anxiety and fear are predominant emotions
Most definitely. I know if I go to a psychiatrist today, I'd walk out with medication for anxiety. I've been diagnosed as having such long ago as well. And fears, yes. Some phobias, some just irrational thoughts that I have to surpress constantly. Obviously, none of this is extremely impacting on my life.

More open to talking about feelings and emotional issues than males with AS
I have no idea how I compare to males with Aspergers. But I don't think I have a problem talking about my feelings at all. Quite the opposite, I'm too honest and forward about it. (Hence the blog, LOL.)

Strong sensory issues – sounds, sights, smells, touch, and prone to overload (less likely to have taste/food texture issues as males)
My family all have issues with this. I can't stand anyone touching my hands, ears, thighs or back. I can't stand someone sitting or standing too close to me. I go crazy if someone coughs, sneezes or even just breaths on me. I cannot stand certain pitched sounds, or something that's "too loud". I'm very sensitive to smells (hence some of my food issues!). Certain coarse fabrics is like rubbing a brick against my skin. Tags gets cut off. Hate hate hate being wet, especially if my socks are wet. Even if it's just one drop I stepped in, I need to go put on clean, dry socks. I put on pj's the moment I've done my last "schoolrun" for the day and doesn't need to go out again. Certain faces and other sights puts me off. If I don't like a person, I struggle to look at their face. Even when it's just a character on tv. When he/she comes up, I look away. Oh, and blankets. I have this issue that I just can't sleep (summer and winter!) when I don't have the duvet covering my neck and back. I get soooo frustrated and irritated and angry, if the blanket doesn't touch my neck. It has to. I will not fall asleep until it does.

Moody and prone to bouts of depression. May have been diagnosed as bi-polar or manic depressive (common comorbid diagnosis’ of AS/autism) while the AS diagnosis was missed
I'm probably one of the moodiest people you'd ever meet. Was called moody from as long as I can remember, so it definately was there as a child already. Same with depression. Similar as with the anxiety, I'm pretty sure I can go to a psychiatrist or GP tomorrow and I'd be prescribed anti-depressants. I've been on it before, a couple of times.

Probably given several different prescriptions to treat symptoms. Will be very sensitive to medications and anything else she puts in her body so may have had adverse reactions
Yep, given loads of meds over the years for loads of "symptoms". And yes, has had many adverse reactions. The funniest one was when I (numerous times) fell asleep from taking rescue remedy pills.

9 out of 10 have mild to severe Gastro-intestinal difficulties--eg. ulcers, acid reflux, IBS, etc.
I have acid reflux and IBS, both since childhood.

Stims to soothe when sad or agitated: rocking, face-rubbing, humming, finger flicking, leg bouncing, finger or foot-tapping

I touch/rub/scratch my face at least 10x per waking hour. Usually lots more. I foot tap when anxious (on a daily basis) or when queueing (I also count when waiting for something). And I rock when I'm really, really crying, upset and being sad.

Similarly physical when happy, hand flapping, clapping, jumping, singing, running around, dancing, bouncing
Face-touching and tapping my foot when I'm happy. I'll also "bounce" (happened more as a child than now). Happy doesn't get me "moving" as much as being sad or upset.

Prone to temper or crying meltdowns, even in public, sometimes over seemingly small things due to sensory or emotional overload
I was called, many many times, things like "banshee" by my family due to my screaming meltdowns. And yes, it was over small things, but to me they didn't seem small at the time. My poor mother!

Hates injustice and hates to be misunderstood, this can incite anger and rage
Oh my word, this one describes me the best out of everything listed here. I absolutely HATE injustice or any unfairness, and would fight lost causes because of this. My mom was driven to despair because of this in me. She begged me not to be so black and white, so restrictive in my thoughts, so unrelenting, so unforgiving. Most of the hurt in my life is also because of what I percieve(d) as me being misunderstood. Nothing drives me as quickly to the brink as the feeling of being misunderstood.

Prone to mutism when stressed or upset, especially after a meltdown. Less likely to stutter than male counterparts but may have raspy voice, monotone at times, when stressed or sad
Yes, I hate talking about it after a meltdown. Just leave me alone!! I don't stutter, can't remember ever doing so. I do have a raspy voice, but write that off due to GERD. It's definitely worse if I'm not on my reflux medication. I don't know if I'm speaking in a monotone or not. I don't think so?


Social/Relationships

Word and actions are often misunderstood by others
Oh yes. Story of my life, indeed.

Perceived to be cold-natured, and self-centered; unfriendly
Difficult one. I think I'm perceived as unfriendly, when I'm not. And I believe I'm perceived as not being cold-natured and self-centered, when I really AM. Does this make sense? I guess it fits in with the previous question!

Is very outspoken at times, may get very fired up when talking about passions/obsessive interests
Oh gosh yes. Most definitely me. I'm extremely passionate about certain things, and voices it at times. I'm very opinionated and honest, and has gotten into ALOT of trouble because of it. Usually though, I'm only outspoken when I'm not face to face with anyone. Like online-chatting. In real life, I prefer to stay quiet.

Can be very shy or mute
Extremely shy. I can and do babble though, but at times I prefer to be quiet. Real quiet. Especially when I'm sad, very shy, uncomfortable, ill, or extremely angry.

Like her male counterpart, will shut down in social situations once overloaded, but is generally better at socializing in small doses. May even give the appearance of ‘skilled’, but it is a ‘performance'
Yes, large crowds makes me dizzy, anxious and causes overload. I hate it, and avoid it like the plague. I have absolutely ZERO desire for example to go to a concert. I've been dragged to a few by my husband as an adult, and do not care to repeat the experience. Ever. I do cope well enough with small groups, when it's friends. Though I find myself trying to get out of get-togethers, and then have to force myself to fall in with the plans made. (I go against my grain and initial reaction and thoughts.) I rarely initiate contact or invite someone. I don't like talking to strangers, but if need be, knows very well how to act and make small talk (like the question says, I'm skilled at acting like I'm not dying inside). I find it draining and not worth the effort though. Even planning to do something with friends, causes me inevitable stress and many anxious moments/days/nights, and I usually end up being in pain from my IBS, until the event is over. Currently, I need to invite some family members to my birthday party in less than a week, and I feel like running into the hills rather than send out the invitation. Sigh. I know it'll be good, I just need to "get there". Only reason why I'm having a party at all, is because it's a milestone birthday and everyone seems to expect one to throw a party on your 40th. I do try to fall in with social expectations. But on my terms. It'll be small, only immediate family and only for a breakfast or cake and tea.

Doesn’t go out much. Will prefer to go out with partner only or children if she has them
Yes, this is me! Absolutely HATE going anywhere. I'd spend all my time at home if I could. And I very, very rarely go anywhere without my partner and/or children. Fortunately, he was raised by someone who believes a wife and husband do everything together. Thank God for that, else he would've thought me VERY clingy and dependant on him!

Will not have many girlfriends and will not do ‘girly’ things like shopping with them or have get-togethers to ‘hang out'
I don't have many friends. At all. It also doesn't bother me. At all. I don't want or need more than what I have. I also hate "hanging out". I hate doing "girly" things, and I hate shopping. I also don't go out with girlfriends to things like spa's, movies, theatre, etc. I don't go out on "girls-night" and secretly thinks it must be the most awful evening out, why would other women want to do that?

Will have a close friend or friends in school, but not once in adulthood is reached
I had very good friends in school, and I do have a few very good friends in my life now. They mean the world to me.

May or may not want to have a relationship. If she is in a relationship, she probably takes it very seriously but she may choose to remain celibate or alone
Yes, I'm extremely serious in my relationship. It's for life.

Due to sensory issues, will either really enjoy sex or strongly dislike it
Hmmm, I think I'll just skip over this one. Way too private.

If she likes a male, she can be extremely, noticeably awkward in her attempts to let him know, e.g. she may stare when she sees him or call him repeatedly. This is because she fixates and doesn’t understand societal gender roles. This will change with maturity
Oh man, I just want to groan and hide my red face. The things I used to do when I was fixated on someone. I can only cringe thinking back about it. Especially the one I used to stare at. I found him so beautiful, I could just sit in class and stare at him for hours (I did!). Oops. He got really uncomfortable, and it took me a very, very long time (I'm talking about years!) before I realised it.

Often prefers the company of animals, but not always due to sensory issues
Not currently true, but was when I was a child. Now, my obsessive compulsiveness about germs has grown to the extend that it causes me to steer clear away from touching animals if I can help it. When I was a child, we had a dog, sort of (long story), but that dog was my best friend. I still miss him. He loved me as much as I loved him. No questions asked. No need to look in his eyes. No social pressures. No expectations.

 

OK, so that's me. As you can see, bar a few traits, I have absolutely all the symptoms of a Female Aspie. Some to varying degrees, obviously. It really explains ALOT to me. Of my history, as well as why I am who I am today. It has shaken me up a bit, though. It makes one rethink all things that went before, wondering if social cues were missed. If things would've turned out different, for better or worse, if I was as "normal" as I believed I was. If I do have Aspergers, would life have turned out the same if I knew about it? Would it have made much of a difference? Would I have had my 4 children, if I knew that alot of Asperger's women finds motherhood really tough? Would I have behaved differently in different scenario's over the years? In friendships and other relationships? And if I have Aspergers, how would I have been without it? What kind of mother would I have been without it? Especially to Boeboe? Maybe, I will one day go and get that professional diagnosis, if I indeed have Aspergers. Maybe some of my questions will be answered just by knowing there IS no answer then. Or, who knows, a professional can clear all of this up as rubbish, and that by itself will answer alot of questions. Or rather, it would just delete the questions for me. :-)

Family Friday

Just an update on the middle two kids, for today.

The geneticist sent through her report. It basically stated that she believes the best way to figure out where Boeboe's genes/chromosomes went wrong, would be a whole genome sequencing. Though, if we want, the micro-array is still an option, and she'll gladly organise it for us. The whole genome sequencing basically looks at all of the person's genes (isn't that amazing? We have 40 000 genes!). While the micro-array will only diagnose deletions or duplications. Thus, for example, if a person had a small deletion in the middle of one of her 46 chromosomes, called a microdeletion. It won't detect genes that's not deleted or duplicated, but mutated.

Unfortunately, neither test is available in South Africa just yet, and both are very expensive to do, especially since it needs to be sent to England. Our medical aid (insurance) probably won't cover it, or much of it. So for now, we decided to see what technology they'll bring into the country the next 6 months, and then make a decision again. It'll give us time to save for it, as well as time to concentrate on Monkeyman for now. It's not as if the answers will give us that much more support or help at this stage. Boeboe is what she is. She has what she has. Her genes went awry, either a bunch of them together on one chromosome, or different ones on different chromosomes. Maybe a deletion, maby a duplication, maybe just mutated genes. What does it matter? We need to accept that she's not a typical child, or "normal" child (why do people hate that description?). We need to realise she has some disabilities, caused by mutated genes, and there's nothing we can do about it. The damage was probably done long before we even knew of her excistence. And since we're done having children, we won't need to know at this point if it's genetic. For Boeboe's sake, we'll make sure she has answers before she has children one day, but for now, there's no hurry.

Personally, after having a good, long, hard think about my own family on my mother's side, I'm starting to believe we have a genetic defect that has been passed on. My mom was one of 7 kids. Those 7 kids had 19 grandchildren. Of those 19, at least 7 had learning problems or intellectual disabilities, birth defects or psychiatric problems. This is just from my memory from when we were children. I do not have contact with those 19 (except my 3 siblings), and would not know how many of them has been diagnosed with anything in the meantime since I last saw them. I also don't know and have never met any of their children. So I do believe that whatever we're dealing with, is most likely a genetic thing, and it's been passed on from at least my grandmother's time. I might be wrong though. Who knows. It just sounds a little fishy, and makes one wonder.

About Monkeyman. I'm awaiting the peadiatrician's return call to say if and what we should do next. I so wish we could just leave it be. I just wanted to STOP with all of these tests and issues and diagnoses and medications and worries and procedures and bloods and and and.

Me and hubby had a long discusion to decide if we can't just leave it all be for now. We're so tired of hurting for our children. To put them through tests and pain and worry. And the finances! Let's not even go there. So we were really close to just call it all off, but then we would see and hear Monkeyman being so tired, and it would bother us. How far do you push for answers? I don't know, but we feel like we haven't reached the end just yet. We haven't done all we could for our little boy. There's still much that they can and probably should test for. Can we really let him be and expect him to just cope? What if grade 1 and homework and sport after school next year is all too much for him?

Today, we had tennis after school. For some reason, the teacher didn't pitch (another story, but let's not digress). We waited for about 3/4's of an hour, while the kids all played on the playground (the tenniscourts are next to the grade R area at school). They didn't mind much, of course, who minds playing on a sunny, warm, wintersday with loads of other kids? After that, I popped into Spar with ALL four of them, probably for about an hour. So we got home a little before 15:00. School starts at 7:30am and on Fridays they come out at 13:00. So the day was 71/2hrs long. For the rest of the afternoon, Monkeyman either just laid on the couch, or cried because of something. When he's tired, he cries about EVERYTHING. It drives me dilly! Anyway, if he can't even handle a short day like today with 2hrs of afterschool activity, how will he handle more difficult days next year, that would also include homework? Without constant tears?

I know that all children gets tired, and 5-6 hours of school plus afterschool activities is a really long day for a 6-year old. I get that. But remember, I've had 2 children go through grade R (kindergarten) before. Boeboe was much worse than Mr N, though both of them easily tired from being at school all day long. Still, it just isn't the same as what Monkeyman has. I wish I could describe it, other than saying he's tired. It's like he's so physically fatigued and drained of energy, that holding up his head is too much to bear. He doesn't show this to alot of people, so even family and friends sometimes struggle to realise and see the extend. Because he can and does push himself when family visits or when we go out. Though, some family has noticed how pale and withdrawn he gets. Maybe I'll take some video footage, that sounds like a nice challenge for me. I haven't put video on this blog before. :-)

(Some hours later, after I've wrote all of the above and saved, but not yet posting).
Just got a message from the Pead. I missed her call around 8pm tonight (Seriously?? The poor woman!!). So she left a message that I just noticed. She says that she phoned 2 other doctors to discuss Monkeyman's case with them, and they decided that he needs to go see one of them, she's sending me the number to make an appointment. She said that it sounds like something is going on on cellular level, and that that sounds like where Monkeyman "fits in" or "falls in". Can't remember her exact wording. Anyway, I guess that's a bit worryingly, but at least things are moving forward again. I appreciate the pead's help on this. It can't be easy dealing with these medical mysteries that's our family. :-(

At least it's weekend now, and we have breakfast with good friends to look forward to.

Wednesday Warmer

So here goes, for Wednesday. Some photo's I wanted to post months ago already.

Mr N when he turned 13. We just had a small family party (one of the advantages
of having many kids - they are a party on their own, hahahaha). He had a "golf"
cake (little golf figures). He took some goodies to school, and we gave him
the gift he really wanted (a PC game).

Our big-eyed baby girl. She doesn't eat well. At all. But given anything
sweet, like cake, and she'll scoff it down!

He turned 6 and was super surprised and happy with his toolbelt.

And the golf bag and set he asked for months ago already.

He had a "toolbox" figures cake and loved it. Not the prettiest, but
it tasted good! He had some friends over for a little party, but like
always, I don't show photo's of other children without their
parents' permission.

Just loving the sand pit that their dad built in the corner of the yard.

I will still one day post pics of their new desk-beds.
This one was taken in Monkeyman's room. They
were all seated on the separate steps we got so
that he didn't need to use the (more dangerous)
ladder all the time. Especially at night.

Even Mr N loves the sandpit. In the beginning Peanut found the cold sand a
little intimidating, but now she's playing with them.

 

I wasn't sure if I should add this one. But for my records, I decided to. The
reason I did, was because Peanut's feet concerns me. I'm not going to
go into a discussion about it now. Just a quick explanation. Genetic
disorders regularly goes hand-in-hand with small abnormalities
of the hands or feet. A frequent occurence is what they call
overlapping toes. Look at her small pinky toes. Especially on her
right foot (left on the photo). I noticed it shortly after birth, but
assumed it would extend and rectify itself during her first year.
She's almost 2 now.