Friday, 24 July 2015 He is now playing football

Besbes (Kareem) loves playing “bou” (ball) in the garden. He walks while kicking the ball forwards till it stops-usually at the flower bed when he says “goo”. It seems that he is always scoring goals. We have to play according to his rules so when it is “ma tè” then it is his turn to kick the ball. He always stands near the end of the rockery facing the patio while the other person stands on the patio. This is one of his rules. Sometimes he changes position and waits in the patio sitting crossed legged on the bench! I think that is when he is tired but still wants to play. He takes little rests.

It has been a great achievement that Kareem can walk, run, kick, know the rules and create his own. Everything takes time but when he does it, everything is a great achievement that brings lots of genuine happiness to all of us especially when he laughs. He has the most gorgeous laughter. It is like  lovely music of a clear bell.

الآن يلعب الكرة

بسبس (كريم) بيحب يلعب "بو" أي كورة ف الجنينة . هو بيمشي بالكورة وهو بيشوطها مسافات بسيطة لغاية ماتقف –وغالبا ماتقف ف وسط الزهور وساعتها يقول "جو". وبكده هو دايما بيحرز أجوال!  واحنا علينا نلعب طبقآ لقواعد اللعبة ال هو اخترعها فمثلا لما يقول "ما تيه اي my turn" يكون ده دوره ف المشي بالكورة. ودائما يقف عند طرف الجنينة حيث السور الحجري واللاعب الاخر يقف ف الطرف الاخر عند الممر. ولكنه أحيانا يعكس الوضع ويجلس متربعا علي كرسي ف انتظار الكرة. اعتقد انه يفعل ذلك عندما يكون تعبان اي انه يأخذ استراحات قصيرة.

انها إنجازات كبيرة ان البسبس يستطيع ان يمشي وجري ويشوط الكرة ويعرف القواعد ويخترع قواعد اخري للعب. كل شئ يستغرق وقتا معه ولكن كل تقدم يحرزه يجلب سعادة غامرة حقيقية لكل من حوله وخاصة عندما يضحك. أعتقد ان ضحكته هي ألطف ضحكة –كأنها جرس جميل

20th April 2017 : Speaking

Dib Dib Dib

The sound of his little feet on the wooden floor in the morning is like lovely music to my ears. I sit in bed just listening to his feet outside my room hoping that he would come in.

He normally gets up about 5:30 am and go to his parents bedroom before coming to my room to wake me up around 7:00 to “go work” . But sometimes he comes early and cuddles next to me. Nothing can put me in a bad mood like being woken up early. Kareem is an exception. No matter when or how he wakes me up, I find myself happy and cannot stop smiling. 

He can say an understandable "morning" and "good night" now. In fact his speech is improving a lot everyday and he is full of chat. I still have to listen carefully as he is now making 4 words sentence and a sentence rapidly follows another. The difficulty comes when he says something and while I understand the words, I cannot comprehend the full meaning of the speech. This is because I am still stuck in the context of previous speech while he has already moved on to another new idea/context! He now asks why about everything. I when you ask him why he replies "because" and then give a reason.

I remember the days when he was saying a word or two and I was wondering when he would be able to make a sentence. Now he is the greatest chatterbox! 

Teacher's card at the end of the year

I was looking at old cards and photos and came across this card from Kareem's teacher at the end of 2015 . Such lovely words. 

Dear Kareem

I have truly loved seeing you grow over the past two years. I will miss seeing you  smile everyday but I know you are going to have an amazing time in year one and I promise I will come and find you in September  to see how you are getting on. 

Much love and hugs

S xx 

The early says of living with a very special baby

12 Nov 2009

Today I went to the hospital to see my baby nephew "Kareem" who was born the day before while I was travelling. The doctor was examining him and I heard his mum crying: he is Down’ isn’t he? Her voice was full of mixture of knowledge (she is a paediatrician) and false hope. The kind doctor said yes but we will do further tests. He left and I held the baby while mum was on the telephone to give the "sad" news to the baby’s dad who is working in another country.

Holding the babe was an amazing moment for me. I could feel floods of love pouring from every cell in me towards the baby. I nicknamed him Boos (kisses) feeling that I want to cover him with kisses except that he was too pure to kiss more than his tiny feet.

Since that moment I am still struggling to believe that there is possibly more love (at least his parents) that exceeds the feeling I have for him.

Dec 2009

Bebs (I keep inventing more derivatives from the original nick name I gave him!) is home but he is not growing very well and we are worried. His mum spends 2 hours a day pumping breast milk in bottles to save him the trouble of breast feeding as he is finding it difficult and we are worried that he would be advised to go for bottle feeding.

Dec 2009

Bebs had a heart echo. His 4 heart chambers are almost one -basically they are not separated as in normal heart and he is lacking one valve. Therefore his body and brain are not getting enough oxygenated blood and that is part of his lack of growth. We start the saga of fixing a date for his heart surgery. Every time the hospital gives us a date, mum and baby go to stay a day or two to prepare for op. Then Bebs gets a fever and op date gets cancelled.

May 2010

Now we are in May 2010 when another saga started. Our local hospital stopped performing open heart surgery for babies and we were referred to Southampton hospital (two hours away from us).  So we had to have a more complicated arrangements: I took time off work in order to accompany mum and baby to the Southampton hospital while his brother Shadi stayed with our other sister. 

At Southampton, Bebs got a date for the operation but in that morning he developed a fever. More blood tests from his tiny veins revealed no infection. Then they decided to test his urine by taking a sample through inserting a needle in his tummy to go straight to his bladder. That was really a horrible procedure which resulted in nothing- no urine came out to be tested. 

His mum tried hard to convince the surgeons that Bebs had no infection but his slightly high temperature was due to dehydration that needed fluids and that the baby was ready for the operation but none would listen. She cried her heart out as she became really worried about his health with his heart condition stopping him growing. 

On top of all that he had some sensitivity to formula milk which was not detected early despite mum's concerns. He was fed through a nasal tube even when he was home. but that is another story! 

Finally the day came and he had his operation. His dad flew to England and he was with his baby immediately after the operation. 

At last he came out of the operating theatre and we were told that he was fine!

OMG at last his hear started to pump enough blood with oxygen to his body and to his brain so we could hope that he starts to catch up on mental and physical development. 

After the hear operation in his car seat ready to go home-at last! 

Learning maths

30 October 2016 (Kareem is almost 7 years old)

I forgot how Kareem learnt to count!. We used books where he traced figures using filter pens which he wiped away afterwards. He really liked to do that and we did it regularly for days and days.  The school played an important role in teaching him the numbers and he liked repeating them. We started counting things.  He loved counting his fingers but for long time I am not sure that he knows by heart that he has 5 fingers in each hand and total of 10. 

Now he can count up to 20 and he loves counting. He also learnt to write the numbers up to ten. His writing which has been all over the place is becoming a bit clearer. It is difficult for him to hold the pencil with a good grip. His mum got him special elastic bands that hold the pencil and 2 fingers but he did not like them. He still holds the pencil in its middle which makes the grip difficult and the writing not focused. However, often he tries to change the grip and holds the pencil near its tip and writes better. Other times he refuses my help to get his fingers nearer the tip of the pencil. If I insist then he would throw the pencil, paper and his glasses away.

This summer (2016) we travelled and I almost stopped doing maths with him. So it has taken some time to get him to remember how to write the numbers. After about a month of daily work, he occasionally forget how to write 3, 5.

Additions:

I have been trying to get him to learn the concept of adding.  I thought that beads would do the trick, but he uses them (and other objects) as toys for playing not counting!. So we use the old method of :

3+2= Leave the 3 here and put the 2 on my fingers. Then I ask what is after 3 and he counts on my fingers. I tried to have 3 fingers on one hand and 2 on the other but he gets confused.

By using this method, he can add up to 9+1. We also use a game of puzzles that has one side the equation with pictures e.g 3 ducks + 4 ducks. The other bit of the puzzle is numbers from 1 to 10. He counts all the ducks regardless of the plus sign and then chooses the correct puzzle number and fit it.

However, I am not sure that he actually gets the concept of addition in his head. His mum and dad use small white boards with him where he chooses the equation numbers and they help him counting on his fingers then write the number. It becomes a bit difficult when he wants to tens and hundreds together and accept he does not have enough fingers to count!

Yesterday he wanted to do 400+20. Today he was doing 200+2 !

I will go back to count oranges and apples and see if it works better.

Here is Kareem learning about volumes: more and less (March 2016)

This blog is long overdue. In fact it is almost 7 years late. I was asked by several people to write about life with Kareem,my nephew who has Down's syndrome . So here is the blog which I hope can be of benefit to others who may have similar experience: of joy and difficulties. But really I am writing in order to thank Kareem for the joy and blessings that he has been bringing to my life and that of all our extended family.

Kareem will soon by 7 years old but I have been meaning to write a blog that record our lives together since he was born. Lots of things came in the way but now I decided not to wait for "when I have the time" to collect all the memories, stories, pictures and to use his mum's diary. I decided to write without chronological order. I wrote few blogs about him elsewhere which I will add here but I did not write regularly.

So here we go!

Add caption

 Few days old

Kareem age 7 in his bed insisting he can brush his teeth! The blue thing is a barrier in case he falls out of bed

Kareem is my nephew. He lives with his mum (my sister), dad and brother, Shadi and me. My sister is almost like a daughter to me. When she was born, I was doing my A level. She was a bad sleeper and I used to study late at night so I used to take her from our mother, put her on my legs and rock her gently while I am studying. Funny enough, years later I did the same for both her lovely kids.

When Kareem was born, I was out of the country busy in a big meeting but my heart was at the hospital and my eyes were fixed awaiting text from my daughter who accompanied my sister to the hospital. I believe my daughter was the first one to hold the baby Kareem, which created a special bond between them.

Since then, he has been an essential person to our lives.