Occupational Therapy Evalution

I haven't updated recently, because we took a road trip! It was awesome. I don't have the bandwidth now to post the pics, will do so in about 2 weeks time. But it was really, really great. We did a stretch of coast (about 500 km's), visiting the little beaches and beautiful places all alongside the coast. But more about that on another day.

In this (long!) post I now just want to discuss some of Boeboe's issues. We took her for an occupational therapy evaluation a few weeks ago. And then just before we went on our road trip, the OT (occupational therapist) gave us the results. And it wasn't too good.

She tested her on quite a few areas, I honestly can't remember everything she told us. I just remember she said that Boeboe had 3 areas which needs work. I believe it was the vestibular system, spacial orientation and midline crossing.

But, this wasn't the biggest problem. I told the OT beforehand that I'm particularly worried about Boeboe's speech, so I asked her to look out for it and then tell us if we need to see a speech therapist. Well, she tested her reading, understanding and other communication skills and it made her very worried. She said that if we don't have the funds, and need to choose which therapy to do with her (occupational or speech) we need to choose speech! Because it's so very very bad and Boeboe needs extensive therapy for it. Fortunately, our medical aid would cover these therapies, at least some of it, so we don't (yet) need to choose. But to help us out on this, the OT is going to give the occupational therapy as home therapy. Meaning, she shows me what to do, and just help/evaluate Boeboe every now and then.

So in the meantime, I need to phone the speech therapist to make an appointment. With the surgery that lays ahead, this will of course have to take a bit of a back seat, which is a real pity. So I'm hoping to get onto this around May. The OT said that Boeboe's understanding of language is really terrible. She doesn't comprehend what she reads, or what someone reads to her. She can't repeat a sentence, let alone a story! This is the type of work they test and mark extensively in grade 4, so it worries me. How would she be able to pass grade 3 or 4 if she can't understand what she reads?

Also, when someone talks to her, the OT said that sometimes it's like talking to her in a foreign language. She sees and hears you talking, but she doesn't understand the words you're using. There seems to be some kind of integration problem in her brain. She can't process language as she's suppose to for her age. And it's not something that's just gonna be fixed easily. Most likely, this is going to cause problems the rest of her life...:(

Boeboe also cannot write a sentence down as it's said/read to her. For example “the bird fly to the nest”, she'll write down “the bird ply”. She looses the plot completely and doesn't hear what you say after the first few words.

The only hope I'm still holding out, is that it's not as bad as what the OT thinks. Or that she may have been concentrating so hard on controlling her bodily functions around the OT, that she didn't give it her all? I don't know, I'm grabbing at straws here, I know.

After seeing the OT, we had a psychologist visit the afternoon, and I think she saw that I was close to tears, so she let the children play a bit while me and she first chatted. She really calmed me down and reminded me that Boeboe is still Boeboe. She's still who she was before the evaluation. All that's changed, is that we now have a diagnoses, for some of Boeboe's problems.

But, that doesn't take into account that we thought her peculiarities just “weird” or “funny”. Never did we find them so worrying that it may point to major deficits. Though, I do have to admit that sometimes me and Boeboe's dad would look at each other, shaking our heads in disbelief at what she just said/did or didn't comprehend. Or when she showed a total lack of logical thinking.

Now, after seeing the OT, I realise that some of it have been staring me in the face, I just refused to acknowledge it. I always told myself she's just not listening. She's just naughty. She's just being difficult. She's just not paying attention. Her hearing has been tested when she was around age 2-3, so I'm almost 100% confident that it's not that. But...who knows? I guess another hearing test is in the cards for us...:(

Another scary thing that the OT picked up was that Boeboe has neurological deficits. About a year ago, I noticed that Boeboe cannot walk a straight line putting one foot in front of the other, without loosing her balance. This is a neurological sign that something is wrong. I told all the neurologists, neurosurgeons and pead we saw, about it, but when they tested her, she seemed fine and then they looked at me as if I wanted there to be something wrong with my daughter. I always felt sooooo ashamed and bad.

This time, I didn't mention it to the OT. I've pushed it to the back of my mind, kinda just ignoring it since many specialists said she's “normal”. And then, the OT picked it up, and told me about it! I was so surprised, I thought we've laid that one to rest. And now it rears it's head again. I'm not 100% sure, but I think it may have something to do with the tethered cord. I don't know, I'll have to research it again.

Secondly, she picked up another neurological deficit. She said that her eyes cannot follow your finger when you swing it from side to side in front of her face. Her eyes “jump”. A neurological sign of something “wrong”. Again, I'll have to research this.

The OT also noticed that her eyes are very red, very irritated, and blinks profusely. Thereby loosing her focus (place) of what she's reading or doing. This may be because she doesn't cry tears (the OT did not know what precisely is the cause, but she was worried about it). The OT wants us to use eye drops. The ophthalmologist also suggested artificial tears, just to keep the eyes comfortable. But Boeboe screams blue murder! So the ophthalmologist advised us not to force the issue since her corneas are just fine. The OT now asked me to put the eye drops in while she's asleep, to see if that maybe helps a bit throughout the day. Especially with the reading.

So that's it. Our daughter has more than a tethered cord. She needs occupational and speech therapy as well. Fortunately, the OT said that her muscle tone that was low 2 years ago, is on standard now. So the swim therapy we did with her for 6 months then (age 5) worked perfectly. The drawback to that, is that it's not low muscle tone causing her terrible handwriting and extremely slow work speed. The OT said it's part of the integration difficulties she has in her brain.

The OT also spoke to her colleague and boss, who's also an OT. The boss said Boeboe's a very complicated and complex case with lots of little issues that may point to something more. So she advised us to go see a professor in genetics. They know of one in Potchefstroom that's very good. We'll get the contact number from the OT. It may just provide us with some answers. I can't help but wonder if it's not all pointing to Allgrove's syndrome. Also called tripple A. But this is a whole other discussion for another day. At this moment, what bothers me a bit is that the psychologist asked me...what's the worst that can happen?

"That Boeboe'll need to repeat a year in school", she answered herself.

Well, of course it's not really the worst that can happen. BUT...it's AWFUL. In my opinion. It scares me. It worries me. Who wants their children to fall behind so much, that they need to repeat a year? And what if it's not just one year? What if she can't make it in mainstream school? I know. There's worse things in life. But still...I'm worried. This is my daughter, my baby, for whom I had such high hopes and dreams in life. She wants to be a teacher one day. I want her to fulfil that dream. To be able to pursue it. To be able to cope in life. To earn a good living one day. To not be dependant on other people.

So what worries me, is that the psychologist didn't say...”ag, don't worry, she's just fine”, after I mentioned everything the OT said. Instead, she nodded her head in agreement and the way she spoke to me, told me clearly that yes, there IS problems with my child. The psychologist knows it. She says they rarely just come out to parents and tell them every little thing that's “wrong” or “off” with their child. They hate upsetting parents and making a big deal of everything. So they tend to underplay it all.

Well, I need answers. I don't want it to be minimised and underplayed. I want to know what's up. So...we continue our journey. The tethered cord surgery is just one of the mountains we need to climb. It's not the end of the road as I used to believe/hoped.

At least one good thing that happened, is that I mentioned to the psychologist that I've been worried about ADD (mostly because the one paediatric neurologist said that Boeboe has severe ADD and that we'll be back in his office within 3 months to beg for Ritalin). Well, it's more than a year later now and not only has another paediatric neurologist, but now also the psychologist said Boeboe definitely does not have ADD. The bad thing of that, is that it's not because of daydreaming that she cannot complete her school tasks or homework even when given extended time...so it's because of something else. But for now, I just want to be happy that my daughter does not have ADD...:) I trust the psychologist's view on this, because she's spent about a total of 12+ hours now with my daughter. Intensively playing and evaluating her. While the neurologist saw Boeboe for about 45 minutes, and he was extremely rough with her. Never explaining anything. Just pushing her forcefully down on the table and getting upset with her when she tried to sit upright. Well, in my opinion, nearly all children would get upset and fidgety when someone treated you like that. So, for now, I'm trying to enjoy the fact that my daughter does not have ADD.

Weekend fun

So I was thinking this morning...is it a city thing, a modern thing or how come weekends is about the children having fun? When I grew up, weekends were about relaxing at home. We rarely went anywhere (except church and Sundayschool) and visiting friends up the street. Since we lived in the middle of nowhere, there was no family close by to visit. Not even for a weekend away. We rarely went anywhere for a whole weekend. My parents friends would visit us, or my mom would go to her friend while we lounged around at home, doing nothing. Or my dad would be off in town while we stayed home with my mom. We really never went anywhere much. Now, this could sound like a complaint, but I really, really LOVED it. I am such a homebody. I was happiest when I could try to finish about 4 or 5 Afrikaans love story books (about 150 pages each) from Friday afternoon until Sunday evening. It was some of THE happiest times in my life. Especially during winter, when I would lay in the gorgeous warm sunshine coming through the floor-to-ceiling windows and glass door we had in the livingroom. I would throw my pillow down, get a bowel of fruit and just lay there all day, reading and snacking. Ag man, that was the life!! I totally miss that.

Now, life is all about our children. Like this past weekend. It started off on Saturday morning with a swimming party. Fortunately, it was friends of ours who's little girls had their birthdays, so at least I knew most of the mommies there so I too had fun chatting. The kids of course had a ball in the swimming pool. Fortunately it was a scorching hot day, not like today (raining!).

Then, we quickly went home to chuck the swimming costumes and then off we went, for another children's party at McDonalds. Again, the kids had a ball. Who wouldn't? You get yummy take-aways, a toy, cake, play at the playground, etc. Unfortunately Boeboe had her first meltdown in ages! She totally lost it, and me too. It ended with me giving her one smack on the bum in public...:-( I shouldn't have, I know. But gosh, when she keeps on screaming and crying as loud as she possibly can, while you feel like you can just stick your head in a hole somewhere to hide your burning cheeks, you don't really have much patience! And I was hot and irritated after spending the whole day at children's parties and wished to be home already.

Then, on Sunday we took my dad and stepmom out for breakfast, so again the children had a ball. Played on the Spur playground, ate pizza (yes, for breakfast! In my defence, we did give them cereal before we left the house, LOL) and got balloons. From Spur we went to a little Petting Zoo where we met up with friends for a picnic. The children had an absolute ball. Though, I seriously doubt that the chicks appreciated the seven 3-year olds as much as the toddlers appreciated the chicks...LOL.

Here's some piccies of the petting zoo:


Boeboe feeding a rabbit some cabbage leafs...each person in the zoo is given 2 buckets of food for the animals



Monkeyman giving a rabbit some carrots

Mr N giving the goat some bread

Careful! They're so hungry they just bite down!

Lots of tortoises roaming all over the little zoo

Monkeyman cuddling a little chick...look how the others all hide in the corner. Shame, poor things!

Ah, got you!

Chicks in the bucket...:-) Here's Boeboe, Mr N and Monkeyman.

Monkeyman dumping the rest of his birdseed

My shy, gentle, kind boy.

A very tired monkeyman, full of dust because he had some fun in the sand

So, as you can see, even a visit with friends turns out to be all about the children. How and why did that happen? I wasn't raised that way? So, is it a modern thing? Or is it a city thing? I've never lived in a city until I was 18. So it's sometimes difficult for me to distinguish what's modern ways, and what's city ways. Though, I seriously doubt that my parents would have acted any differenty even if they raised us in the city. Children did NOT dictate their weekends or plans. Children were supposed to be seen, not heard, LOL. Wish I could get that as right as my parents did. Why do I let my children walk all over me?? Why are we so scared to just say NO. To toys, sweets, parties, school events, everything. We sigh and we moan, but we still just do it. Again with the school's revue end of 3rd term. I'm seriously NOT in the mood for this. But do I say NO? Uh-uh. Never. How would you poor child feel...standing alone, watching all the other kids participate in the revue? Of course we can't do that to them. Same goes for when they get to put on red&white for valentines day. Do we say NO, we're NOT paying the R10 or R20 for them to not wear school clothes? No, we pay while moaning all the way. Because we can't let our kids be the only ones in school clothes while the rest is wearing white and red. Again with a Blue Bulls game. We pay the R10 for them to wear Blue to school. And on "Loslit dag"...we pay. And for spring day. And and and. It just goes on and on. We go out of our way to just make sure our kids "fit in". That they don't stand out.

So who's really giving in to peer pressure? Is it really the kids? Or the parents? And what does that teach our kids? That we must conform and "fit in" at ALL costs? That to stand out, be different, is wrong? Gosh, I wish my mom still lived. I would have loved to ask her where am I going wrong? How did they keep us sane and still raised us with THEIR values, and not with what society pressurise you to do.

New sixpence!

The psychologist asked me to mend the mother-daughter relationship by doing more girlie things with my daughter. So we went to the hair stylist together. 

The before picture

Like mother like daughter...

And the after...

Such a happy little girl...:-)

My beautiful daughter

Then, the next day daddy took Boeboe for a picnic. Just him and her. She had a ball on the climbing frame in the park:

Look at me daddy!

You still looking at me, daddy?



Boeboe loves swinging!


It was a good weekend. Boeboe felt spoilt and special. I'm absolutely amazed at this little girl these days. The psychologist asked us to stop disciplining her for a while, because she's so emotionally fragile. We're to concentrate on positive encouragement only. Well, I thought by myself "BIG TRAIN SMASH HEADING OUR WAY". There was absolutely no doubt in my mind that some tough weeks were lying ahead.

And then she just astounded me. Instead of pushing the boundaries EVERY way she can, she's calmed down! The moment I stopped being as strict and hard on her like I used to, she calmed down and has even less tantrums and moans. How amazing is this? I can't help but feel extremely guilty. Was my disciplining part of her behaviour? I do realise of course, that it's not just me. Or just now. This has been coming along since the moment she went on nappies. What a different child she is! And now, with positive encouragement instead of disciplining, the last few tantrums have dwindled to about once a week!!! Can you believe that? From several massive outbursts per day, we're down to once a week. I'm speechless! Well, almost...;-) You know me, I always have something to say...hahahaha. But today, I'm just thankful and grateful that my little girl is so much calmer and happier.

So I'm over my morbid feelings of last week! I guess you need to mourn the losses every now and then, to accept and go on. And it doesn't help much to see how much function Boeboe has lost while she had the botox. Now that it's worked out of her system, we realise how bad off she is. So much worse than a year ago. But, at least she's happy, she's doing well, and our household isn't in total chaos anymore due to her tantrums! She's really working hard to earn her stickers every night (for not giving in to any bad behaviour), and so is her brother for whom we also made a star chart. It's really working, and I'm forever grateful to the psychologist. It would not have worked 6 months ago. But now that Boeboe's on the nappies and in "control" of herself, it works beautifully. The poor little girl had to spend so much time trying to control her bladder, she was in serious distress, and unable to control herself at all. Hence, the tantrums. Now, she's turning into the person she was supposed to be. Calm, happy, obedient and sooooo sweet and loving, it's unreal! Who would've thought that nappies could bring around such a change in someone? Nappies...and a loving, kinder mom.

Being sad...

Today, I don't want to be matter of fact. Or compliant. Or accepting of everything. Today, I want to scream and shout and cry. And vent. Today, I'm sad. I'm so very very sad for my daughter. Yes, it could've been worse. We could've been dealing with cancer. Or full-blown Spina Bifida. Or a syndrome that attacks cognitive functions. There's so many, many things that's worse than what my daughter has. But today I wanna be selfish and not think about those parents and children that deal with something worse than what we deal with. Today, I want to be selfish, and just cry for our losses. Just cry for what my daughter does have to deal with.

It's so horrible. Of all things....why the bowels and bladder? Especially the bowels? Why...why...why? She's such a dainty, beautiful, fragile, sweet and kind little thing. Why did this have to happen to her? WHY??? It's not fair. She doesn't deserve this! Nobody does, but especially not such a sweet and kind little girl!

Things are going so bad for her. So very bad. And it makes me just wanna crawl into a corner and cry my heart out. She's being so strong and optimistic and happy even when facing these horrible things that's happening to her. How did it happen that she became so much stronger than her mom? When did that happen? She's handling everything so superbly. Both her psychologist and teacher commented to me in less than a week, how amazed they are at how well she's handling it all. How mature she's about it (even though she's actually emotionally less mature than children her age!) and how well she's coping. Yes, it makes me grateful.

But then I hear how she's having accidents in class, and being called out on it, and it breaks my heart into a thousand little pieces. This is so private. It's always been me and her against the world with this. Now, it's just her. Standing alone. And it makes me so very very sad for her.

Fortunately, she has a GREAT teacher, who's really working WITH us on this, and who's supporting Boeboe 100%. It makes a huge difference. It could so easily have been a teacher that gets put off totally and blamed the child. This teacher really gets it that it's not in Boeboe's control, and that she's honestly trying her best here.

I'm so scared that Boeboe's going to be bullied about this. Being teased is bad enough. But things like this can so easily lead to being bullied. I know the school would help us and squash things the moment they start. But still, I'm scared for my beautiful little girl. She's so precious. Why did this have to happen to her? Why did she have to get this horrible, horrible disease? Or condition? Or whatever you can call it. Defect. Why did she have to be the one to get this? And get it so bad? And why were the doctors in our country so UNINFORMED? I've taken her to so many, many specialist, from age 5. And NO ONE ever knew what was wrong. They just all assumed she'll outgrow this. That she's naughty. Or that it's just a developmental thing. WHY WHY WHY. So many years have been lost. She's so much worse off today, than 2 years ago. So MUCH worse off. So much function lost.

I'm so sad. I'm so angry. I'm so scared.

What's going to lie in her future? How will we handle all of this? How are we going to cope? How will her life be? I don't know. I'm not good with the unknown. I just want her to be happy. To do well in school. To have friends. To marry someone good one day. To have children. She'll be such a great mommy. She's always talking about how she just wanna be a teacher and a mommy one day. She wants 1 little boy, and twin little girls. And I wish I could give her the world. But I can't. And it makes me sad.

Why did this have to happen? Why couldn't she be as normal and perfect as her 2 brothers? Life is so much easier for them. They don't need therapists and psychologists and doctor visits and tests and operations and nappies and and and. I don't wish any of that on my boys. Of course not. Life is difficult and hard enough as it is today, for any child. But why did it have to be so much worse, so much more difficult, for my beautiful little girl? It's so unfair. It's not right. It shouldn't be like this. What went wrong? Where did it go wrong? Why did it go wrong?

:(   :(   :(   :(   :(