Every time I asked about progress or diagnosis, they (place where we go for appointments) kept telling me "it's in progress, we can't tell you anything, it's too soon, or even the worst of it : "sorry we can't tell you anything due to confidentiality reasons"... um.. sorry that's my child, I'm her mother, what the hell are you on about ?
So I requested to speak to the director, but of course I get referred back to this idiot person I've been seeing every month since October... he seems really off the wall, answers my questions by other questions, or by weird explainations such as (heard today : "when you make an omelette, you don't know if it's going to be too salty before you break the eggs). This guy is the "medical director" of the therapy center, who I already talk to about every month and who is the one who gave me the privacy excuse as well as the rest... believe me, when he talks, he makes no sense... I heard something as stupid as "when you invite people over, you don't bake the cake once they've arrived". What that has to do with anything, I do not know...
Anyway, last Tuesday I was there for the usual appointment, and that guy comes over to me and asks if he can talk to me. He goes "I've been told you wanted to talk to me" (keep in mind I had an appointment set to talk to him next Tuesday), so I told him that no, he was not the one I wanted to talk to, and I had told the secretary just that...So he goes "well we'll talk anyway, it can't hurt". And I was really cross at that time, because I despise the man, he's dumb and talks to me as if I were some sort of idiot or something.
So we go into his office, and start talking. He asks me why I wanted to see someone, so I went off on him and get really pissed off and angry, in order to get ANSWERS.
So in the end I threatened to hit higher up, because this is just not right... (first I was not supposed to see him today, he just took it upon himself to come and see me in the waiting room while I waited for Ashley's appointment with another person, and he wanted to talk to me... I was scheduled to see him for our monthly meeting next Tuesday... he was NOT the one I requested to see, I wanted to talk to someone HIGHER than him)... anyway... after 45 minutes of going round and round in circles, when I ask him for a name, something, so I can inform myself, he goes "so you want a psychiatric diagnosis?!" in this sort of surprised tone.
I was like "um yeah, whatever you wanna call it, I want to know what the hell the problem is that we are dealing with!" so he tells me the name in French... which is "developmental disharmony".
When I got home, I first put it into a search engine in French, so I could write about it, I read that in the US, it is referred to as : Multiple Complex Developmental Disorder...(in a wikipedia article). Which when I read about it in English articles/forums etc... does not add up, in my opinion. I found out that there is a divergence between what professionals in the US say about it, and what French professionals say. It seems that "developmental disharmony" is used as a loose term where they (French professionals) put all their eggs in the same basket, and it can regroup and mean a lot of things... I don't quite agree with what French articles say about it either...
Here is what that person told me : that my daughter might have to go and have therapy for YEARS, and that she may never integrate a "normal" kindy class. Ashley only goes half the time other kids go to school here already (she goes Mon-Tues-Thurs 1.30 pm to 4.30 pm and Friday 8.30 am-10 am (should be 11.30 am but we have an appointment at 11 am so I have to pick her up early for that). The other kids go from 8.30 am- 1.30 pm then break for lunch then 1.30 pm to 4.30 pm). He said "she might be on that same schedule for a couple of years", and I am wondering how I'm supposed to be independant by having a job and a place of my own if I can only work less than 10 hours a week!).
Phew, 3 months of asking and wondering why the heck I'm going to this place 3 times a week... and what happens there because I'm not told anything... all I can get out of Ashley is "we draw pictures with Mrs Borius" (psychologist) and "we do exercise with Mrs De Palma" (physical therapist).
I still am not sure how this helps her though... but the man is convinced that the progress I've seen in her behavior is due to the therapy. And when I try to tell him that it may or may not be the case, he gets all upset... I understand that it's his job that's on the line if kids don't need the therapy and all, but still...
When it rains, it freaking pours, don't it ? Because clearly I didn't have enough stuff to worry about on my plate... *sighs*.
I wouldn't have had any real concern about Ashley's behavior if it weren't for her teacher last year (who was a real bitch, to put it lightly!) who found everything Ashley did/didn't do, was wrong. So she bothered me enough that I accepted to see a professional to see what they thought. Well they were not a good match, I didn't like them, didn't like the place, and after 3 times going I just said "forget it".
We waited until this school year to see someone else (once again cos we were referred to them, by a different school/teacher, as she had to change schools because the other closed by the city's decision as it would cost too much to get the work done on it that was required to meet new safety requirements), so I thought I'd wait until we were in a different school and see how she did, but as they had in her file that the other teacher had us consult, they wanted us to go and see someone, so Ashley could have the help she needed (an aid in her classroom, just to be with her).
Here is a little bit of information about Ashley :
Ashley is not doing well with social interaction with other kids. You have to keep in mind that she was with me from birth until she started school at 3 years old, and in the mean time, we had moved to France, where she didn't know the language. She had never been around other kids really, so I thought it was normal that she was "unsure" about it. She would just freeze when we were at the park and there were other kids, she'd stop playing and stay right next to me... now she can actually be at the park, and she'll play even though there's other kids. She won't play WITH the kids, but she won't mind them being there.
She takes a while to warm up to people/have a relationship / trust them. But once you gain her trust, she'll act different and will get upset if someone she likes/has a relationship with goes away. Of course, I put that on the fact that she was separated from Daddy when she was just 2 years old... who wouldn't have separation anxiety after that ?
And she has a hard time staying focused on what she's doing, so she'll get up and walk around, and as she's not focused on something, she'll go off into her own thoughts...
She is a little behind in speech, but I attributed this to the fact she had to learn a whole new language from scratch. And she had to try and learn two languages at the same time, as she was just starting to speak English when we moved to France (when she was just 2 years old).
What I thought the problem was, is that she may be hyperactive. But professionals tell me that's not it... although she just won't stop moving around, and won't sit still for too long, gets bored of an activity really quick...
For me, all those things were just normal, in regards to the situation, and they would "get better" with a little work, attention and redirection. I thought maybe she'd be a little delayed compared to others, but I never thought I would have to be faced with seeing a psychologist 2x a week, and a physical therapist 1x a week. I mean, I can't see anything "wrong" with her as far as motor skills go... she does exaggerate her movements, but to me, it goes with the "hyperactivity" thoughts, as in she can't control her movements well, due to the excitement / being hyper...
She also has a little mind of her own, and if she doesn't want to do something, she won't do it, no matter how you try to get her to do it. For example, if you want her to draw a letter A, and she decided that she wouldn't, then she just won't, nothing you can do about it, although she KNOWS HOW TO !! When it's something that we MUST do, then it's different (ie: getting dressed to go out or to school or something). I thought this was normal behavior for a kid her age...
I just don't see how the "treatment" they're giving her is going to help with the troubles she has... By treatment, I mean, seeing the psychologist and physical therapist. I've been going there since september. And only now, are they telling me what they think is the problem, and that was after I got angry. Who knows how long they would have waited if I had not jumped out of my skin ... Oh and no test has been ran, she only ever saw the psychologist and physical therapist.
Yesterday afternoon, we had our meeting with everyone involved with Ashley. Here are the notes I took during the meeting, translated to English.
The people who attended the meeting : Ashley's teacher, School director, School district inspector/manager person, school district pediatrician, therapy center's administrative director (who is a really nice lady, the one I wanted to talk to in the first place).
People who were present and talked :
Laurence Gilland : Teacher
It is important for Ashley to be accompanied by an aid at school, or school will not be interesting nor useful for Ashley, as she gets too overwhelmed. She can benefit from the classroom environment when she has this support. Next September, she will be in a mixed class with 2nd and 3rdyear kids (she’s currently in a mixed class with 1st and 2ndyears, and is in the 2nd year group).
The aid who’s with Ashley this year is the right fit for her. She maintains a good balance of authority/help/ and has formed a bond with Ashley. She takes her role seriously. She listens and puts any given advice into application.
When the aid is absent, Ashley withdraws herself from the environment and appears to « go off in her own world ».
Ashley will keep the same aid next year.
Evolution : Ashley can and is not afraid to go from one room in the school to another by herself (bathroom, play room, corridor). Her behavior has progressed and she is more present. When she is sollicited for an activity/exercise, she is happy to participate/try.
Academically: When there is a visible, tangible result in the exercises seen in the notebook, you can figure the aid has helped her a good deal.
The teacher said : « She’s an adorable, likable little girl, who deserves to be paid attention to and helped. And to top it off, she’s also pretty ».
Therapy center's administrative director
Ashley attends her appointments regularly. She has made a lot of progress. She’s mentally present during the work sessions, as opposed to “off in her own world”. She has started to communicate with the different people who see her. Great efforts made by mom for taking her to the appointments 3x a week.
Conclusion For next year :
Presence at school increased : 4 mornings (Monday, Tuesday, Thursday and Friday) and 1 afternoon (Thursday). With a possibility of increasing it some more during the school year, depending on progress.
Appointments will be on Monday and Tuesday afternoons with the psychologist (Mrs Borius) and Friday afternoons with the physical therapist (Mrs De Palma).
So there you go ! What do you think of it ? I think she is doing pretty good, unlike what the other idiot told me. He made me feel like Ashley was making REALLY SLOW progress, but the teacher and the lady from the CMPP (Administrative Director) seemed to think that she made great progress. It was really refreshing to hear and noone else but this one guy is making it seem like it's THAT serious.
Sorry this was LONG, so if you've made it that far, you are a star and it shows that you really do care... So for that I thank you!
I have a less ranty entry to write... with pictures! We went to the aquarium as a day out for Mommy and Ashley for her birthday, and on Friday morning she celebrated with her friends at school (I baked 50 cupcakes for the occasion). Also this week, we got a bicycle with training wheels out from the basement (it was my niece's when she was little!) and Ashley took to it like a pro.
I just have to run beside her when on the sidewalk because she does not always pay attention to where she's going and I don't want her going off the sidewalk and into parked cars... but when she's in an open space, she can have more fun, and mommy can take pictures/videos. She's awesome!
