Raising an emotionally healthy thal

As parents of thal patients - we all receive information with regard to our children's physical health.  Hopefully, we are able to transfuse and chelate our children as needed. 

Along with their physical needs, our children also need to develop healthy emotional and mental health.  They need love, attention, discipline, involvement in team activities etc etc.  Ultimately, the emotional health of a thal patient will effect his/her physical health because emotionally balanced thal patients are more likely to comply with their treatment.  If children love themselves and their lives they are more likely to do what it takes to live long and healthy lives.   

It would be nice to discuss ideas that we have learned that each of us can incorporate into what we are all doing already.  I know the mom's here are exceptional and I would love to hear what you all have to say. 

Over the years, from my visits with different clinics and my own observations I have picked up a few ideas. 

Eventually, they will be taking over their own health - and at that time they need to 1) want to take care of themselves, 2)be disciplined  enough to do so.   
I have learned that children are more likely to be happier if they do not spend time feeling sorry for themselves, and if they focus on the positives in their own lives.  A good self esteem is also important.  This can be developed through team activities, charity work, helping others and feeling important, getting an extra edge with school work, being involved in art or music activities.  A child who is competent and has an opportunity to develop some talents is more likely to have greater self esteem.  A child with a full life and many interests and capabilities will more likely be physically and emotionally healthy. 

Having faith in our children also gives them self esteem.  Whether they are getting an IV or a poke for desferal, believing that they 'can do it' will help you and them.  Don't make a big fuss around their pokes and eventually they won't either. 

Although thals may be prone to depression - I think that we can do a lot to prevent it.  We can do so by making their transfusions more fun, and getting pokes over with rather than allowing "five more minutes, five more minutes..."  We can do so by acknowledging their feelings.  If they say I am sad - you find out why and if they don't know why - help them accept sadness as one of their feelings just like anger and happiness.  Tell them that their feelings are what make them human. 

These are a few of my ideas - I am eager to hear yours! 

Andy you are right .I was wrong to initiate such measure, I'm sorry.

Promise, : :   no more nonsense,
Kathy

As a Thal patient , My Idea is ...
do not think that thayls cant do this .. push them and they will do that ... encourage them to keep moving towards their destiny ... treat them like normal persons and then they will respond you in normal manners .. first 20 years of my life i were scared off to the Pump but when my uncle and my parents told me that i have to do this and its complusory for me to have chelation with pump and there is no other way to cope with Iron Overload then  i Started  .. and still having chelation .... its wat thals needed , they need a force to be pushed forward .if thal say i cant do this then tell them , no buddy you have to do this ... if they argue i cant attend school bcoze of illnes , then tell them to take care of their selves and heal fast .....

i remember once sajid told me that he attaempted some of his 1st year/2nd year's exam by leaving the hospital without the permission of Doctor ( when he was admited in the hospital ) .. and he passed with a good grade ....
here i want to mention another fact that is . thals can prepare their for exams in a short time than the normal childrens .... i always joined school just 2 months before the exams .. and gather Notes from my friend just 2 months before the exams .. and my position were 3rd - 5th ....

thals are usuly little inteligent than others . bcoze they have time to observe the thing, facts and matters .... but other can read only dont have time to observe and think about wat is written in the books .. 
i remmember , i m making  toy of another broken toy, since i was 7 years old ..
once i made a Remote controle Boat to a Broken Car's parts  when i was 12 years old ..
then i got Computer and i learned to use computer on home on my Own  and my computer has never been in the hands of any expert to make it running again ....
 i fixxed all probs and error on my own  everytime ..

All wat i want to say that dont think that Thals are out of the race of the world , they can run and win the world as well ...

Best Regards
Take Care
Umair

Good points Sharmin and Umair,

What i do is,i never treat my daughter any differently then my son,she gets her part of rewards and punishments  as any other child would,for performing well in school or being naughty ,i haven't much discussed her thal infront of her,i don't know if she is ready for it,if she ever asks any question i try to answer as easily as possible.
Thanks to Allah,she is so normal in her routines,and Alhumdulillah healthy that now in out family,no one even asks how is she doing or is everything alright with her,because no one sees any difference and chnage in her from any other normal kid,and that has helped a lot,bcause if people keep asking curious and stupid questions infront of kids,they will think that there must be something wrong with them.
And alhumdulillah we haven't encountered any problem lately so even me myself has taken her chealtion and transfusions as a routine activity.
Just try to be normal around your kids,never let them feel that they have anything less then  others,tell them that they can do anything they want and they should be thankful that they have all body parts with out any defect and that they are born in an age of medical and scientific development.

Zaini.

Thanks Umair and Zaini,

I am definitely taking notes!  How well our children do has just as much to do with their upbringing as with the medical treatment. 
It is so easy to get wrapped up in the treatment and to forget their emotional needs and the discipline.   

Umair, like Lisa, Sajid, Danielle and others here - you spend much of your time responding to the need of others.  Your input here is very helpful to our members - I personally hope to learn from you so that I can instill these qualities in my son.  Along with raising healthy children we want to raise compassionate and responsible people. 

Zaini, you are so right - our doctor stresses how wrong it is to treat thalassemia children as though they are 'sick'.  He also stresses the need for discipline - so that we are raising our children to be good people.  You are so right, it is important to treat children the same regardless of their thalassemia state.  It is also important not to allow them to be defined by their desease. 

We were told during our last trip to Oakland that - "your son is healthy and he is going to live a long life - he will graduate, go to college, get married and have kids - as he chooses"  and that "it is up to you as parents to try to raise a happy child so that despite transfusions and chelation he will want to be here when he is 50years old". 

I understoold this to mean that if a person has a full and happy life as well as a great attitude they will not mind the inconveniences of transfusions and chelation to maintain their life and their health.  As I was stressed and worried at the time, he had the nurses take my son outside to play and then told me to "please get the worried look off of your face, your child looks like a happy child who is excited about life and as long as he has that he will be fine.  children can read our expressions very well and begin to worry about themselves needlessly"  The doctors were pleased that my son was talking to them about hockey, science, basketball and school.  These factors are contributing to his well-being. 

As I can see from the accomplishments of the other thals here - I think that thals have an ability to excel - just like Umair mentioned how he does very well at school despite missing school and our champion Zainab - on the first place podium in her school athletics. 

Thals can do it!  Why expect anything less? 

Thanks guys!  Please keep posting your ideas and your accomplishments friends we have much to learn from one another!

One point more,

Please don't ever feel pity for your kid,or if you feel so,don't ever express it infront of them,if you'll feel pity for them,they'll accept it as a behaviour,and self pity is a real killer of talents.They'll feel like they can't do anything ,and self pity will stop them from even trying,and without trying ,one can never know their strength.

Zaini.