When to tell him??

I always wonder when should i discuss thalassemia with my son. Is it better to ignore talking about it as if it is something normal. I mean i will never go and tell my son you are sick but i mean how steps start and at what age? For me when my daughter tells me why you let Ahmad drink tea and i don't, i simply say because he has a lot of iron and you don't . Both of my children accept the answer and don't argue but what if they said why? What should i say. ?

All the CBCs and even the treatment that he is taking right now are injections and when he says things like why me and not my sister, i just lie and say that these are for boys to give them big muscles and all the boys at your age take the muscle injections. Ahamd believes me and when he asks me when he will finish i lie again and say when you are 7. Now he believes me but later on what shall i do when my lies will seem very stupid.

Shall i explain his situation like '' everyone has a different body and your needs are different that your sister. You need so and so and she needs other things...'' will it work this way?

I always have scenarios in my mind to answer questions like'' why should i be sick'' and my answer wil be that '' you are better than others, you can walk, talk,.......'' But actually i don't want to reach that stage, i want things to come easily but can't figure out how. Hope you can get my point. What annoys me is that my son is really a shy and senitive character by nature nad usually these kinds of personalities are more vulnrable if they get the feeling they are different or that something is wrong with them.
 Can he grow up without knowing anything about his illiness, Is this possible???
I am so confused and stressed, i think he will lose confidence in me if he discovered that i am lying to him

Manal

Manal,

I don't know if this will help but...

I used to work for the American Diabetes Association and I had a lot of children and parents that I would deal with. Many parents would tell their kids that we would have a cure for diabetes in 3 years or 5 years and give the kids a time frame for a cure and for their treatments. I found that most kids whose parents gave them a time line and didn't tell them upfront that it was a lifetime of treatment the kids gave up once they reached that time marker. 

For example I have a personal friend of mine with diabetes and her parents told her that by the time she was in hight school there would be a cure. When she got into highschool and realized there was no cure in site she gave up on treatment; stopped testing, stopped bolusing on her pump, stopped changing her infusion sites. She got very sick and had to have psych and medical treatment for a long time to pull  out of it.

I am not a parent with a sick child (thank God) but I do have a sick sibling.  I think it is very important to sit down early on and explain the situation and make children realize this is their life and they have to continue treatment for the duration of their lives.

Hi Manal,

I know what are your fears. My parents had to deal this in a more severe manner as in K.S.A they admitted us Thal. for the transfusions and I had wondered why me and why not my sis?

My parents did something which is very hard; "Be honest". The day I asked them (around 6-7 yrs age) they told me that I was different and I needed it. Somehow it seemed to work as I knew there were other kids at the hospital (my buddy Waleed who is a member of this site too) who were undergoing the same thing as I am and I'm not the only one. At this age religion also helps a lot if your child is aware of it from beginning as I was aware of the fact that God Almighty rewards the person He chooses to test, so it helped me somehow that all this pain is not in vain

I know it is a very hard thing to do but like they say "Honesty is the best policy"

We haven't come across such situation so far, but in our mind we will explain the situation in the best honest way. We think its best to let children know what is going on and be ready for it.

Regards

Well HONESTY is the best POLICY!!!

Be honest with your child!!! My parents have never kept anything from me... From the day I can remember going to the hospital they told me that I will have to do this for the rest of my life... If you prolong the situtation and tell your child at a later date....
Your child might in years to  come resent you or even blame you for what they are going through...

I have knows some patients who have done that and who also resented the fact that they had to chelate and didnt and they all suffered...

I hope this helps you

Take care

Manal, This is a great question. I am also dreading the day I have to answer to my little girls question "Why me?"

Smurfette, sajid: I will remember your advice to be honest.

Hi Manal,
I began preparing my son early - telling him as much as he could understand at each age.  At the same time I have also worked hard at raising his awareness of other peoples problems - and pointing out his own good fortunes.  I always made sure that all donations made by our family were made by him so that he felt like he was making a difference.  Because he was always made aware of the positives and negatives in othere people's lives - I was able to slowly make him aware of the positives and negatives in his own.  When we first spoke of his thalassemia I was careful to point out his best friends peanut allergy etc.  The information did not come to him suddenly but a little bit at a time over the years - so he was never really shocked.  He is now 9 and a half and seems to be quite well adjusted and happy with it - we have also encouraged him to take charge of his own health and so far he has done that quite well too.   I have been as honest with him as possible - and have encouraged him to come to me if he has any questions or concerns.  I have made him aware that there may be a cure someday, but if that if there isn't he will be fine anyway.

Your a great mom Manal and you'll do a great job helping Ahmad understand.  Let us know if we can help.

Sharmin

Thank you all so much for your replies. They all helped me so much and i will be honest in every question he asks me from now own. Sharmin i like your strategy sooo much and actually started today with both my kids pointing out the pros and cons of the surroundings. Actually i was happy when i told Ahmad would you prefer the needles or to be like one of the neighbours who suffers some problems and he answered happily'' of course mummy needles everyday ''  i appreciate it so much.
Manay thanks

Manal

Hello sharmin,

Very nicely said. I would infact say that - What sharmin mentions to her child is what everyone should tell their child. I do NOT have thal kids, but still when we talk about appreciating what we have, I always point out that - there are so many people around the world that do NOT get food to eat, clothes to wear and have a roof above their head. So for every thing we have we have to thank God for it. That makes their outlook built so that when they become adults, they are better human beings and understand others more.

Just read some statistics, which we can mention to our kids :- From http://www.fighthunger.org/files/hunger.fact.sheet_eng.pdf

852 million people do NOT have enough to eat
Every 5 seconds a child dies because she or he was hungry

Hi Manal
MUSCLE INJECTIONS !!! . I am surprised he hasn`t asked anyone at school as yet if they take muscle injection. Hassan is still too young to know what`s happenning, but I have always answered my daughters queries honestly. We sometimes underestimate how much a child can understand.
MAHA

hey, its not easy but the best way is to tell truth, tell you kid that he is different but take care that it should not hurt him, don't let him feel that there is something in this world which he cant do. and its so true too that there is nothing in this world which we thals cant do!

but never hide something about him from him, tell honestly, answer all the queries.

never let him feel that there is something wrong with having thalassemia, Its the best for his future, encourage him for making his dreams come true.

don't let anyone pity him!

my parents never used to hide anything from me, my father always encouraged me for being stronger, facing and accepting the things the way they are. And he still do so!

he is my hero. he is the one who told me that may be i have something different but every special thing is different from the ordinary ones.

Hi Gaurav and welcome to the site.

Thanks for your words, they are very helpful and guiding and i am so convienced now that simple and straight explaination of facts is the best way. Please send my greetins to your father, he is a great parent

Manal

Thanxxx a loads for your words, yeah, he is the greatest i've seen!

Hi Manal,

My heart goes out to you and to all the parents, but as others have said before me now honesty is your best policy.

You should sit both kids down and explain things to them both. Explain the disorder, the treatment, the day to day living, diet and anything else you need too.

I don't recall what age my mom told me that I had thal major but i remember she explained things to me, how i have to go for blood to be able to go to school, i need to do my injection so i can one day be a big girl, u need to brush your hair so its nice and tidy, u need to brush your teeth for healthy teeth and gums etc. You just need to explain things to them in a simple manner.

Your little one may say but why me - it may hurt you. I blamed my mother when I got to 16 yrs of age, I was cruel to her I said alot of things that hurt her but as she said to me, "YOU are the result of two people being in love, how do you control outcomes when you are not sure if there will be any?" My parents didnt know they were carriers of thal, i was diagnosed at 3 months.

If I remember correctly I have posted on the forum of my story where as i mentioned before i kept blaming my mother for everything, how she knew she was a carrier and she knew and she wanted me to suffer. (I was so cruel to my mother )

My mom worked at a school for the physically disadvantaged children, I saw alot that day and at the end of the day my  mom said  to me " Is there anything wrong with you?". I  was moaning "oh i got thal and how terrible and how this and that" after that visit i saw how lucky I was to ONLY have Thalassaemia Major. I hung my head and said NO we are blessed we are able to walk , talk and do many things other people can't do. We only live with a condition that needs abit of personal grooming on the inside to make us look good on the outside.

I think there is a picture book you can get about thalassaemia and explaining it to kids. I know TIF has it for sure. Also there is a magazine from Apopharma u can get, I think its called Iron Warriors. I have some copies here at my office which I would love to send to you Manal and anybody else that might want one. It explains thalasaemia and  our treatment in a simple format and in a fun way a cartoon coloring book. ( PM if you want me to send u a copy)

Good luck with all this and I am sure you will do a great job. I know our job as parents are not easy but you are all doing a wonderful job and you should all be so proud of yourselfs. Your children will be proud of you also like i am of my mom 

Miaki

Hi Miaki,

I was wondering if you could digitally scan or photograph these cartoons and upload them here so that we can all benefit from them. I'd like to spread them among the children here so that they can be more comfortable with their treatment and have a better understanding of Thal.