THE TRIALS OF CARING FOR A SPECIAL NEEDS CHILD
Occasionally on the various social media sites out there we see parents talking about some of the difficulties in raising a child with special needs.  Certainly parents of children with Moebius Syndrome know how this can be.  I found an interesting article today with some frank discussion by a parent of a special needs child (though the child doesn't have Moebius; he has a form of epilepsy) along with mention of the some of the important rewards that come with the territory:
"Joan’s son Jack is 12 and has a form of severe epilepsy that affects his intellectual capabilities and his behaviour. He needs one-on-one care 24 hours a day. Joan also has a daughter Ruby and the family lives in Belmont, Victoria.
Jack has a form of epilepsy known as Lennox-Gastaut. His development was normal until he was about three years old and the uncontrolled seizures began. The severe seizures have affected Jack’s intellectual capabilities and his behaviour.  His condition is expected to get worse with age.
‘Basically, Jack needs one-on-one care all the time. He needs help with dressing, feeding, toileting and you need to watch him all the time in case he takes off. You always have to be aware of what he’s doing, whether it’s making sure he’s watching videos or making sure he doesn’t become too aggressive with his sister Ruby. You really have to get everything done at home, like getting dinner ready, before Jack gets home so that you can care for him. Because of this, going out becomes too difficult. Sometimes you’ll give something a go but when an outing turns into a disaster, it’s easy to give up. You tend to base your life around home and not have much of a social life.
‘As a result we have to do everything separately. I might take Ruby out while Paul (my partner) takes Jack out.  Without family support you rely on paid carers to get respite.  The support we can access is not flexible and is allocated on a case-by-case basis. This makes working particularly difficult – I can get funding for a carer to pick Jack up after school and bring him home if I am sitting at home, but not when I am at work because it is not classified as respite.
‘What is particularly frustrating is hearing about how society is so accepting of disability and disability is catered for in the community. It is total crap. Most parents I know with children with disabilities have a really hard time taking them out. As a parent you are given a really hard time when your child looks normal but doesn’t act the way they should be acting. You can feel really defeated.
‘You also lose your close relationships and tend to mix with other parents of children with disabilities because you can relate, they become your support network. You don’t want to listen to people with pretty easy lives complain about what you see as trivial bullshit.
‘At the end of the day though, the rewards do outweigh the hard stuff. As a parent you do get a lot of love back and Jack does have a particularly good sense of humour. As a family we have a really tight bond, everything is out in the open and we all know each other really well.?

"Nothing of character is really permanent but virtue and personal worth."--Daniel Webster