Saturday, January 16, 2016

She has Aspergers.

Boeboe was diagnosed with Aspergers this week by her psychiatrist. Long ago, when we first saw her (about 1-2 years ago, I think), the psychiatrist called me and my husband in after spending time with Boeboe alone. She said that her very first thought was that Boeboe had aspergers. But then something made her think it is more than just that. She believed it was VCFS.

This has been ruled out now, of course. In the meantime, we just went on with our lives. Boeboe's tantrums, aggression, psychosis, anxiety, depression, etc. were all extremely well controlled via medications. To be on these types of meds in our country, you have to be under the constant supervision of a registered psychiatrist. It meant that I had to take Boeboe for a visit to see her psychiatrist every 2-3 months. Our last visit was in October last year, so in this past week, I drove Boeboe to her next appointment. I had absolutely no expectations of this visit, since it was just the usual follow-up. She spends a bit of time with Boeboe (sometimes with me present, sometimes without), then talks to me, rewrite the script if necessary to adjust the meds and we're off on our merry way. I expected nothing different from this visit. After she saw Boeboe alone for some time, she called me in. We chatted a little with Boeboe present, then I asked Boeboe to leave me and the dr a little while alone, so that I could give her the update from the psychologist as usual (we had a parent feed-back session with her 2 months ago, as Boeboe has been back seeing the psychologist on the demand of the psychiatrist). In any case, it was after I gave her the psychologist's feedback, she told me that she believes that Boeboe does indeed have aspergers. Her social issues are too severe, and it's not improving as time goes on. Plus all the other signs she has, makes her believe that we indeed have an autistic little girl. Despite the fact that her eye contact is actually not bad at all (most of the time), and she loves hugs and kisses.

So yeah, that's why I'm posting again. I haven't forgotten about my blog. I was just in a space where I didn't feel like chatting about the kids. I needed to find myself again. I was so wrapped up in the kids that I lost myself, and the blog was part of that. I needed the respite from medical issues and everything that goes with that. The constant worry until you feel like you're going crazy. I needed normality. Our whole family needed it. To just for one year, be like all other families. Kids going to school, mom works part-time and loving it, dad doing his full-time job, afternoons kids go to afterschool activities, weekends just family time. We had a perfect year. One year of very little stress more than any other family. No major medical issues or appointments or such. Of course nothing is ever completely normal where Boeboe is concerned, so we still had a few appointments, scares, worries, etc. But somehow we handled it without it becoming a big issue.

Even now, the asperger's diagnoses isn't THAT big a deal, iykwim? Of course we're worried. But no more really than what we were. Of course it can't ever be "normal" and "okay" to hear your child is autistic. But like I told the psychiatrist, it doesn't shock me that much, since by this time, we've accepted that Boeboe isn't a normal, average kid. The psychologist told us in November that it was necessary for me and Boeboe's dad to realise that Boeboe isn't normal. We had to accept that fact, before we could really support Boeboe. And that she can see that we've come to that conclusion. And started to help Boeboe. It was what was needed for Boeboe's sake. It's been such a long, long road. 12 years. To accept that those drs/friends/family who kept on telling us she's "normal" and everything is and will be "fine", was wrong. They were wrong. We were wrong. And somehow, we've come to this realisation during the past few years, and started to accept it. The psychologist said that we now have to accept her limitations. Like the fact that she will not ever have normal speech. That she's basically stuck with where she is now. And we need to lower our expectations with things she just simply cannot improve anymore. We had to accept her social difficulties. She's not a lost case. By all means not at all. The psychologist will and is still working with her, and believes there's much to do that we can help and support her. But that's it basically, we're supporting her. Not waiting for that magical change one day where she'll be on par with her friends. She can only reach HER potential. Not our expectations of what a "normal" daughter should have been.

So, I was already in this final acceptance phase when the psychiatrist gave her the Asperger's diagnosis 4 days ago. And I told her, Boeboe is Boeboe. We know her now. We know what we deal with. Slapping a label on it, doesn't change it AT THIS POINT any more. It would've. At age 3, or 7 or even 10. But now, at 12, it's just a label. The issues has been recognised and accepted and dealt with as best we could. Getting a name for some of them is great. But it doesn't change much what we do for her from here on out. Maybe it'll make things easier when we tell her teachers. I don't know. I haven't thought that far yet. But for now, we just keep going like we are. Supporting her (even at age 12) much more academically than what should've been necessary, helping her through exams and social situations and heartache, taking her to specialists like the psychologist and psychiatrist, etc.

Apart from this, how are we doing?

Really, really, really well! We're all so happy. We had an awesome summer holiday on the beach. A month of sunshine, swimming and loads of rest and relaxation. The kids did amazing in their new school last year. Monkeyman and Mr N cleaned the house at the prize-giving ceremony. Best in almost all their subjects and in their grade. We were so proud. But what made my day, was when Boeboe got an academic merit certificate!! Boeboe!! An academic merit certificate!!! <*put shocked face in here*> It's a bronze certificate, recognising that she reached 60% average. Amazing. A child that has previously failed (at least some subjects, even in the new school). We (she) worked SO hard. Especially on her maths, and she pulled an 83% for her exam!!! This new school is so so so good for her. It's absolutely amazing, what's happening. She's catching up (academically), because she's supported exactly as she needs to be!

All 4 kids is absolutely loving this school. They're mostly healthy. They're relaxed. They're doing wonderful. They're happy. Boeboe has had a really, really hard time with friends, but it's a fight we now knows will be the rest of her childhood. And we keep on fighting it with her and helping her every step of the way. She has even made a close friend end of last year. It won't last. I know it won't last. But until it goes awry, we're enjoying the respite. And it means the world to Boeboe's self confidence.

Do you know what's really, really sad? So many adults that have met Boeboe, will say stupid things to us like "she looks normal to me", or "she seems just fine", etc. End of last year during one of her psychologist visits, she admitted to the therapyst that what hurt the most was that every girl (bar the one she's now friends with) in her class has asked on numerous occasions "what's WRONG with you!!!". Well, more screamed/said it than asked really. Out of frustration, surprise, anger, whatever. I can easily guess the emotions behind those words. Because how many times have me and her dad uttered it silently throughout the years?

The kids in her class were more perceptive in their innocence (and meanness) than our family/friends were. THEY realised there is something wrong. (Not that I approve at all the way they asked it or thereby hurting my daughter deeply! In fact, I'm quite angry about that. And they really should've been taught better, imo.)

I think the diagnosis is a confirmation to validate our complaints and feelings over the years. How many, many, many times have me and her daddy looked at each other, dismayed, and whispered that this child just has no self-control, no tolerance, no logic, no fear, no common sense, no sense of danger, etc. Everything that came instinctively to other people, she had to learn.

The psychiatrist said we now have to really work on her reading of social cues. She doesn't see it at all. Body language, facial expressions, etc. She just cannot comprehend that there's such subtle signs, let alone interpret it correctly and timeously. We will now focus on that with her.

This diagnosis doesn't mean it doesn't cause us heartache anymore. Seeing how our daughter suffer. It just makes her victories so much sweeter. Like my SIL said when we told them. Boeboe is actually then doing amazingly, taking into account that all this time, she was/is autistic.

Soon, I will post some pics of the kids and our holiday. And maybe a post about Boeboe's signs and symptoms of Aspergers. I'll try and not neglect the blog again as much as last year. :-)

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