Marie and Alex are devoted parents of a young man called Jett. He is a fine young man of 30 years, big strapping 6ft 2inches tall, who has a moderate level of intellectual disability. He was identified before school and sadly for Jett and his parents he is also non-verbal.
They sought an extra diagnosis of autism when Jett was 8 years old, simply because it was highly confronting to comes to terms with the intellectual disability label.
Marie and Alex learned very early that parenting a child with a disability was a full time job, he always needed constant watching over. Teachers called them in for endless meetings and there were always therapy and medical appointments to attend.
Dealing with the acting out behaviour at home was a trial and they worked on making sure that their other 2 children were given the attention and care they needed and deserved.
Both are strong in their faith with the Catholic Church, good people who despite their grief associated with parenting a child with disability feel that it is their duty to do the best for him. God gave them this child to love and look after.
So, now in their 70's they find themselves in a position where Jett is totally reliant on them as carers day in and day out tending to personal needs as well as managing his routine of therapy, sport, exercise, outings and work placements. Marie will now say that Jett's intellectual disability is very evident.
On the one hand they are devoted accepting their life but on the other hand they feel some envy when friends holiday and live restfully in retirement. Such a hard place to be. If only they could choose?
But, Jett has only had 2 nights away from them in his entire life, he gets anxious and upset when he is out of routine away from them.
Should they listen to the doctor when he advises them to increase Jett's independent living skills as a precursor to placing him into independent housing? Marie and Alex are filled with grief and guilt.
They hope they have at least 15 years to live and maybe in that time they can seek some sort of alternative living arrangement. There is time they say. But are they right?
Cheers and Blessings
