Post by frankieb on May 26, 2014 4:44:45 GMT
o,
I'm looking for advice on solving what will undoubtedly become a problem for our family in September.
We are a family of 4 living on Rakah compound. We've been here for a week and are just finding our footing with regard to school, location, buses, travel times, etc. My daughter, 9, attends DH school and is loving it. My son, 5, is enrolled at Pre-K here at Rakkah and due to start school in September.. however. My son has Becker muscular dystrophy. He was diagnosed this past December at Great Ormond Street Hospital in London. This means that he has muscle weakness and experiences extreme fatigue if he has too much activity. So far, we're trying our best to handle it, but he does get extremely wiped out and it can mean he needs to really rest. He has to be checked each year for heart problems as those can go along with BMD, and we have to be careful that he doesn't get too tired as the damage to his muscles can be dangerous and bring on other conditions, like Rhabdomyolysis.. he can't receive certain types of anasthesia and must wear a medicalert bracelet for school. It's no picnic!
In the past, I lived in close proximity to his school and was able to bring him home for breaks when he needed them, or allow him to miss sessions when necessary so that he could take part in swimming or PE later in the day - otherwise, he'd be so tired afterward he'd miss the following day due to fatigue. It's a difficult disease to manage especially when kids are too young to know how to pace themselves, and so I worked with the school and we did our best to schedule things for him so he could cope with it. I used a stroller with him up until about 6 months ago! He's far too big for one now, though, and we would be smart to have a portable wheelchair in the future but we don't have one yet. Walking long distances are too hard for him (and potentially harmful).
Anyway, our issue of course is the long bus rides from Rakkah to main camp for school, and how inaccessible the school will be for me if I need to get there and help him, go in late, etc. Not to mention how exhausted he'll be at the end of the day, leaving at 6:30 am and getting back at 3:45 pm. My husband and I both work - my job is based in the US and I telecommute - and taking a 2 or 3 hour window to go and pick him up each day just isn't going to work as I won't be able to get my work done.. he needs me to be nearby, obviously.
We need to move to main camp before school starts in September so that he can attend school without problems. We (obviously) have tons of paperwork explaining his condition, and could produce more supporting my claim (to need to be nearer the school) - our pediatric neurologist and neuromuscular physiotherapist would undoubtedly support this and write letters for him.
So my question is: how do we approach this and begin sorting it out? Has anyone else on here experienced a similar situation or do you have any knowledge of how it's handled by Aramco? I can't imagine they don't support kids with extra needs of this sort, but I really don't know where to begin - are there housing advocates or anyone I can go to for help? We are American payroll and so supposedly we have to move to main camp eventually anyway.
ANY guidance on this would be so, so appreciated.
Many thanks!
I'm looking for advice on solving what will undoubtedly become a problem for our family in September.
We are a family of 4 living on Rakah compound. We've been here for a week and are just finding our footing with regard to school, location, buses, travel times, etc. My daughter, 9, attends DH school and is loving it. My son, 5, is enrolled at Pre-K here at Rakkah and due to start school in September.. however. My son has Becker muscular dystrophy. He was diagnosed this past December at Great Ormond Street Hospital in London. This means that he has muscle weakness and experiences extreme fatigue if he has too much activity. So far, we're trying our best to handle it, but he does get extremely wiped out and it can mean he needs to really rest. He has to be checked each year for heart problems as those can go along with BMD, and we have to be careful that he doesn't get too tired as the damage to his muscles can be dangerous and bring on other conditions, like Rhabdomyolysis.. he can't receive certain types of anasthesia and must wear a medicalert bracelet for school. It's no picnic!
In the past, I lived in close proximity to his school and was able to bring him home for breaks when he needed them, or allow him to miss sessions when necessary so that he could take part in swimming or PE later in the day - otherwise, he'd be so tired afterward he'd miss the following day due to fatigue. It's a difficult disease to manage especially when kids are too young to know how to pace themselves, and so I worked with the school and we did our best to schedule things for him so he could cope with it. I used a stroller with him up until about 6 months ago! He's far too big for one now, though, and we would be smart to have a portable wheelchair in the future but we don't have one yet. Walking long distances are too hard for him (and potentially harmful).
Anyway, our issue of course is the long bus rides from Rakkah to main camp for school, and how inaccessible the school will be for me if I need to get there and help him, go in late, etc. Not to mention how exhausted he'll be at the end of the day, leaving at 6:30 am and getting back at 3:45 pm. My husband and I both work - my job is based in the US and I telecommute - and taking a 2 or 3 hour window to go and pick him up each day just isn't going to work as I won't be able to get my work done.. he needs me to be nearby, obviously.
We need to move to main camp before school starts in September so that he can attend school without problems. We (obviously) have tons of paperwork explaining his condition, and could produce more supporting my claim (to need to be nearer the school) - our pediatric neurologist and neuromuscular physiotherapist would undoubtedly support this and write letters for him.
So my question is: how do we approach this and begin sorting it out? Has anyone else on here experienced a similar situation or do you have any knowledge of how it's handled by Aramco? I can't imagine they don't support kids with extra needs of this sort, but I really don't know where to begin - are there housing advocates or anyone I can go to for help? We are American payroll and so supposedly we have to move to main camp eventually anyway.
ANY guidance on this would be so, so appreciated.
Many thanks!
