Friday, 31 October 2008
Thursday, 30 October 2008
My eldest son, Chadi, is diagnosed with Asperger syndrom which is a form of autism. To understand what this means I have copied some information about Asperger syndrom below
People with this condition have difficulties in three main areas.
- have difficulty understanding gestures, facial expressions or tone of voice
- have difficulty knowing when to start or end a conversation and choosing topics to talk about
- use complex words and phrases but may not fully understand what they mean
- be very literal in what they say and can have difficulty understanding jokes, metaphor and sarcasm.
- struggle to make and maintain friendships
- not understand the unwritten 'social rules' that most of us pick up without thinking. For example, they may stand too close to another person, or start an inappropriate topic of conversation
- find other people unpredictable and confusing
- become withdrawn and seem uninterested in other people, appearing almost aloof
behave in what may seem an inappropriate manner.
imagining alternative outcomes to situations and finding it hard to predict what will happen next
- understanding or interpreting other peoples thoughts, feelings or actions. The subtle messages that are put across by facial expression and body language are often missed
- having a limited range of imaginative activities, which can be pursued rigidly and repetitively eg lining up toys or collecting and organising things related to his or her interest.
While there are similarities with autism, people with Asperger syndrome have fewer problems with speaking and are often of average, or above average, intelligence.
So there you go...A lot of obstacles for Chadi to tackle.
He is at the same primary school as his brother just he is in a special learning support class for children with learning dificullties. He has been there since P1 ( he is now in p2) and will stay there until p4. And I think ,and so does his teacher, that he is doing really well at the academic part but his behaviour still needs to be improved. The same thing at home, because he can be a handfull ...well 3 handfulls even. But I see much progress since last year so keep up the good work little man!! We will get there!
Soufian is doing very well. He is really creative and very social and loves to try out things himself. It usually means that things what he gets his hands will be dismantled....or gets broken!!! ( MMM....... THAT IS EXPLORING THE WORLD AROUND YOU ...) But he is a great boy and really funny sometimes.
I am proud of my boys and I hope they will continue to do well.
Next year Sanae will join them at school when she will start nursery..I am looking forward to see how she will do!
Tuesday, 28 October 2008
Monday, 27 October 2008
Today I had put my mind on cleaning the house (again.....grrrr) from top to bottom.
Sometimes I ask myself why I even bother: As soon as Chadi and Soufian enter the house when they come back from school everything is turned upside down again. You find a trail of toys, crisps ( or cookies) and whatever else from their room to the living room and all the rooms in between. But I have introduced something new: CLEANING UP BEHIND YOU!! When I say it to Chadi he looks at me like I am speaking a foreign language but Soufian and Sanae are doing their best so I am happy enough ;-)
So I had my task set but our Sanae was not her self today...yep she too caught te bug which has a grip on our entire household these last weeks. So our little ray of sunlight had turned into a thundercloud this morning all weepy and grumpy. When she finally fell asleep on the sofa and Dounya as well in her basket I could get on with things. I was nearly finished when the phone rang and a lady of an organisation called Surestart asked if she could call around later in the afternoon to register me and see if there were some activities I would be interested in. It is an organisation who have all sorts of activities for babies and toddlers and their mums ( and dads).
So it sounded interesting enough and I agreed that she could come at 2.30 pm.
It was a very nice lady who worked as a health visitor as well . We talked about a lot of things like Douya her condition, Chadi's learning disabillities ( he has Asperger syndrom ) my working background in the Netherlands and courses I could follow here etc. and ofcourse about some activities I could do with Dounya and Sanae. They have playgroups for the wee ones while the mummy's can have a quiet cup of coffee, baby massage ( lovely for Dounya) dancegroups for toddlers and loads more. So I might try some out!!
Because she works as a health vistor as well she has seen quite a lot of babies with a CHD. I asked her if there was a support group here in N-Ireland, because I have searched but couldn't find an active one. And then she said : ' no there aren't any, but maybe they are waiting for you to start one!' and she said something else as well something about she could see I am a strong woman ( WHO, ME??)
I am not sure if I am but it is really nice when somebody thinks that of you. Since I am not working anymore and not doing some kind of study, sometimes I feel like I have come to a stand still. I would love to pick up some study in Social work again and go back to work. But at the moment those are things for the future, when Dounya has had her surgery and all is well.
And who knows...I might start a support group overhere in the future...:-)
To all who put a comment on this blog: THANK YOU I really like to read them so keep on doing it!!!
Sunday, 26 October 2008
Saturday, 25 October 2008
Everything seemed right, but she was already special because of the birthmarks on her little behind...mongolian blue spots they are called. Never heard of it before but they say it is common with children from mixed races. They will disapear when she is growing up though.
Dounya got her little checks and everything was fine so we went to the maternity ward and because her delivery was straight forward I was thinking we would leave the hospital Sunday.
But when the paeditrician checked her during his round sunday morning he picked up a murmur in her heart...and our journey in the unknown started.
I could not leave the hospital with Dounya until she could be seen by cardiac specialists in the Royal Victoria hospital in Belfast where they have a special children's unit called the Clarke Clinic.
The doctors did a lot of checks with her and they found that she had a congenital heart disease called Atrioventricular septal defect ( AVSD).
She will need a mayor surgery..an open heart surgery.
The first days after the news I felt a bit lost an found myself searching the internet about Dounya's condition. But when I read al those stories and facts it felt like it had nothing to do with Dounya because at that moment she was still doing very well.
That soon changed unfortunatly.... and all became very real.
August 25 started fairly normal. The two eldest boys went to school and I was at home with Sanae and Dounya.
The evening before I noticed that Dounya was breathing quite fast and I asked Jamal if he noticed that too. Was it beginning? So soon already??We thought the best thing was not to panic, because the doctors had warned us this would happen.
In the afternoon the midwife came to do Dounya's check ups....and she was worried about her breathing. ......straight away she phoned our GP to get an urgent appointment and we could be seen within an hour. The GP said that her breathing was indeed fast and so was her heart rate. We might be overprecautious he said but let her be checked out at the childrens A&E just to be sure she is allright...
So I went there in craigavon hospital were they did a x-ray, an ECG and checking her SATS. It was not the way it should be.. Dounya was in heart failure which basically means that her heart was not coping. The doctors said that she was looking well for a baby in heart failure, not blue or pale but pink!!!
She was sent up the childrens ward and put on the monitor.
I had to leave her behind...We just had her 5 days home...
The next morning was terrible when my other children went into the room searching Dounya like they used to do every morning. They love her very much and every morning when I brought her downstairs they welcomed her with a big cheer! But this morning she was not there
and i never forget the look on their faces. I told them Dounya got a poorly heart and that the doctors need to mend it someday. That is why she was not feeling well at the moment and had to stay in hospital to get better. I could not answer the question when she would be back because I did not know myself...
the days in hospital
Dounya was put on medications to get rid of the fluids in her body and one to stabilise her heart rate. she was feeding poorly and after 3 days she needed a tube through her nose directly in her stomach a so called NG tube.
But she is doing fairly well at the moment...our little fighter.