I promised when Grand Master K was diagnosed that I would update on the blog as we partook this journey..so here is the latest installment:
We attended the Paed appointment a week or so back. He was happy with the way that K is going at school and asked what the latest concerns are. I stated that the main ones atm are the extremes in moods and reactions. He is constantly tantruming or yelling at me. Every morning without fail he has a comeback for everything, he loses it over nothing at all. It starts from the minute he opens his eyes until the point when I drop him at school.
We run by the same routine everyday and he seems to have added defiance and yelling into the routine. I feel like I have aged a hundred years this year and everyday is immensely stressful. The Paed suggested that although we know the reasoning behind the way in which he reacts that he still needs to be pulled up on the behaviour and needs to be shaped to behave in the way I want him to. I did state though that I need strategies to cope with the extremes in mood and reactions, and I believe that K does as well and so he has referred us to a highly recommended child Psych in the area, who we have an appointment with on the 18th January.
The Paed also filled out the medical forms for centrelink and after a lot of kerfuffle (they denied the claim for carers payment because I didn't provide forms which I never recieved...but i went to pick them up, the paed filled them out and all was right again) he has been given a health care card (which will help with the $200 paed appointment fees *ouch* ) and we recieve the carers payment now.
The Child Psych who we have been referred to is highly recommended. First thing he asked on the phone was why we wanted to see him? I needed to state the reasons (extremes in behaviour, anger issues etc) and then he has requested that we bring along K's end of year report, all school assessment documentation and the speech report when we come to the appointment. I am hoping to gain alot from this appointment, I hope I am not disapointed.
Speaking of the Speech assessment. Yet again K has come up 1.5 yrs ahead of his peers in nearly everything except for pragmatic speech. Pragmatic Speech covers such things as:
- making and responding to greetings or farewells
- initiating, maintaing and terminatign conversations appropriately
- taking turns in classrom activites and social interactions
- maintainting eye contact and appropriate body position during conversations...
etc. Very much expected that this would be an issue for him. Some of the suggestions given to help him are:
- giving simple explanations and simplifying language.
- ensuring that he understands all key concepts before sommencing tasks
- work on irregular grammatical forms such as irregular plural and irregular past tense in sentences.
- Topic Maintenance..if he is to change topic half way through a conversation then we are to gently guide him back to the topic we were talking about.
- establishing and maintaining eye contact with conversational partners
(not sure how we will go with that one!)- turn taking in conversations
- interpreting and understanding nonverbal cues
- initiating, maintaining and terminating conversations appropriately....etc
There are also ideas on how to bring about change in the above skills provided.
With the school testing being completed I asked to speak to the Assistant Principal last week to find out what the next step will be. The AP that I wanted to speak to, and have spoken to throughout the assessment process was unavailable and so I was directed to speak to the new AP. To say I was unimpressed with her is an understatement. Not once in the discussion did she ask my childs name. She asked what the diagnosis was and then the result of the speech assessment. When I explained that his issue was pragmatics and that it was Aspergers she said straight away that Aspergers Children do not generally get funding (mmm BS!) and that pragmatics isn't a high indicator for funding either. She will look it up though and let me know. When I voiced my concerns at next years teacher being aware of his issues and how wonderful this years teacher was (who is leaving at the end of this year :( ) she said that of course the school would put into place a special program and teach to his needs regardless of lack of funding.
That is such a relief...it perplexes me though how she will a)look up my childs file and see what is happening in regard to funding and b) ensure that a special program is going to be put in place for him in 2010 if
she does not know his name! . So guess which parent is now going back into the office this afternoon to speak to the Assistant Principal that
just might have a clue and not be trying to suck up to a concerned parent with empty promises, while providing uneducated responses in regards to funding (I am aware of several Aspergers children who are provided school funding and do have aid time..1 even has a full time aide). If K does not recieve funding nor aide time I will not be heartbroken as he is high functioning and with a good teacher can get through adequately without added assistance, but I want to be sure that he recieves what he is or isn't entitled to.
As far as K goes in general. Well as stated above mornings are a nightmare and I do believe that the pattern is set atm for him to react this way on a school day and it is something that I am going to have to work hard on during the holidays and for the commencement of the new school year.
We had a family Christmas lunch yesterday and there were many instances where he had a meltdown and screamed at me, over eating lunch and joining everyone else..etc. There were moments in the day where it is blaringly obvious that he has Aspergers. It is like a slap over the head as to how i ever could have not known it. My cuz asked me yesterday if I ever thought it (Aspergers) before and you know what, I have several times throughout the years. I have worked with Autistic children (before having my own children) and there were parts of my sons personality that screamed to me that he had traits..that maybe?? and yet all the professionals and everyone else who dealt with him said that it was not the case and so I let it slide.
Am I finding that he is getting worse lately, or am I just more aware of his behaviours now we have a name for them? Before I would state that I didn't know what was wrong with him. Now I state that I do know why he is behaving that way but I don't know quite how to handle the behaviours and placate him as yet.
As he gets older the differences though are becoming more obvious. But for the negative behaviours he has there are a billion counter active positives. He is oh so smart and funny. He comes up with the most sarcastic things, he has the best sense of humour and will pull you up on everything.
At school he is managing his behaviour so well. The teacher told me that he was backed into the corner with a child throwing pencils at him last week :( he got very angry but he did not respond. He caught the teachers eyes and he let her deal with it. At the beginning of the year this same situation would have resulted in that child being thrown across the room. When I asked if she had paired him with friends next year to make the transition easier she said that she had but could not remember who. She then said, "It doesn't matter though with K, he is friends with everyone. All the kids like him because he is always helping them" She also told me, "K is a crack up, he makes us laugh everyday and will not let me forget anything, if I say I am going to do something and I don't he will remind me of it. If I move something from the place it should be he will reprimand me" . I was so proud hearing all of this and couldn't stop smiling..here was the boy that I have always known..it just took 3 terms for him to come out of his shell :)
K will often say to me at the end of the day that he has no friends. He will be genuinely upset that he has none, that none like him. Yet from the classroom to the car he will have 5,6,7 kids say, "Bye K" . I will look at them, big or small I have no idea who they are and yet they look at my boy as though he is the bee's knees. When I point out that 'that child said Bye to you, they must be your friend and know you', he says "they are not my friend. That is ..... from ......grade" . He has preconcieved notions of what makes a friend, and casual acquintances do not make the friend mold he has in his head. When they speak to him he will look their way but hardly ever respond to their greetings and they will look hurt, one even said to his sister at the time that K didn't answer. That I find hurtful for them and also for the fact that he is totally unaware that he should say hi or bye back. This will definitely be something that we work on (and something which I bring up at the time and also often out of social situations) .
There is a family that we have met this year and get along well with. One of the children L is in K's grade and they are friends. She is the only girl in his little circle of class friends (
the boy that grew up with girl best friends suddenly started Prep and said that he cannot be friends with girls, only boys...I guess different rules apply within the school walls :P) and apparently she is his calming factor. After school last week I was chatting with K's teacher and another teacher and the other teacher commented on how L calmed K down earlier in the session. Apparently he was looking agitated and did not know what he was meant to do and L just hovered over and grabbed him and set him straight on task. The teacher was preparing herself to step in and the situation was defused without effort by L. Perhaps I should take lessons from her as I am not even able to do that with K! ;)
Oops..this has turned into an epic post. Next steps for us are:
- child psych on the 18th January
- working through the Speech Pathologists recommendations
- pushing the school to genuinely check the funding (or no funding) situation
- setting a calm morning routine in place over the summer holidays.
Speaking of summer holidays..when trying to diffuse the "I don't want to go to school" dramas of this morning by telling him that he only had one more week of going before he would be on summer holidays I was told, "No, that does not make sense, it is not right! Why is it summer holidays..the other holidays were Term 1 holidays, Term 2 holidays, Term 3 holidays...where are the Term 4 holidays? there has to be Term 4 holidays..not summer holidays!"....rules and routines people! :)
