Wednesday, February 22, 2012

Nobody said it was easy

Having a child with special needs is so many things. It's a challenge and a struggle. It's a joy and a blessing. It's an adventure and a roller-coaster. It's a lesson and a test. It's all those things and more.

Having a child with special needs is time consuming. You are essentially your child's case manager. You need to stay on top of scheduling appointments with specialists and therapists. You need to complete forms, endless forms, oh so many forms! You need to apply for funding, submit invoices and file paperwork. You spend countless hours researching and organizing. It feels like you are constantly fighting for your child's rights, in an attempt to get them everything they need, even when you're not sure what that may be.

There's nobody else who stays up at night wondering whether your special needs child would benefit from this new therapy or whether he would qualify for some other funding. Nobody makes things any easier; nobody is forthcoming with solutions available to you. You need to search them out and track people down in your attempt at obtaining answers. Sometimes it feels like everyone is working against you. The hospital, the therapists, the social workers, the daycares, the preschools, the school boards... That's if they're working at all. There's a lot of indifference out there. As a parent, you're only looking to do what's best for your child and there's all this red tape in the way.

Being the parent of a special needs child takes up a lot of your mental energy. It's exhausting. Sometimes it can leave you feeling resentful and bitter. Often times frustrated and overwhelmed; almost always guilty.

Add your other children into the equation and the worries multiply. You wonder if they resent their special needs sibling. Do they know they are loved equally? Are they jealous of the attention their special needs
sibling requires? Do they get it? Are they enjoying this crazy ride? Do they appreciate what the special needs child has brought to your family or do they only see what they've "taken away"? You constantly wonder whether you're doing the right thing for all your children. Are your other children getting the attention they need and deserve? It's a battle. Sometimes it's so clear that what's best for one will not be for the others and what are you supposed to do about that?

1 comment:

  1. One day at a time right? You guys are doing an awesome job. Whatever decision(s) you make over the next little bit, I'm sure you and Damian will figure it out and it will be the right one. Go with your gut. Unfortunately you can't please everybody.
    Have a nice 24 hours away.
    Love Pam xoxo