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.