Responsibility

I have been thinking a lot lately about responsibility. What is society’s responsibility towards children with special needs? What is the role and responsibility of friends and family of children with special needs?

The government, for example, understands that they do have some responsibility to help children with special needs. From an economic point of view, I am sure they realize they have to give families some assitance as, if they don’t, these kids are more likely to end up in institutions which is more costly than keeping the kids at home and leaving most of the responsibility to the parents. So the government helps with medical expenses, they sometimes help with therapies and equipment. So there is some recognition that society and the government has to help these children and their families.

I have noticed there are so many movements and non-profits and support systems set up for people with cancer. If a child is diagnosed with Leukemia, for example, other people step up and help, they offer to cook and clean, they offer to watch the other kids. There is a lot of support in general. But the difference is, leukemia is a condition that can be treated. If the kids get better, the leukemia ends and life goes back to normal.

Brain injury never ends. Perhaps some of the less affected people recover and don’t have to continue with therapies etc. But kids that are more seriously affected don’t just “outgrow” or “recover” from cerebral palsy. It is a life long battle.

So I wonder if this is one of the reasons there is so little interest and willingness to help? Maybe people are only able to muster up compassion for short periods of time, and can’t bear to be in it for the long haul.

I wonder when Nathan was first diagnosed in utero and when he was first born we had lots of support. People thought it was a one time battle, and that it was just about him surviving birth, so we had tons of people offering to help. But afterwards, not so much.

So I have just been wondering what the role of community and society is when raising a child with special needs.

It saddens me to see how little support there is. Most of the families that I have met are doing it on their own. Are doing their very very best to make things work for their kids, without the help of others. It breaks my heart.

So I have decided to write more about the daily difficulties of caring for a child with special needs. The catch 22’s that we face, the common and uncommon challenges.

Maybe if people are more informed they would be more willing to help. Maybe what we’re lacking is information.

But maybe I’m totally off base. Maybe our kids are no one’s responsibility but our own and we need to do what we can on our own.

I honestly don’t know.

Comments

  1. http://lmmatos says

    WOW!!!!….In regards to family & friends, my wife & I go through the same emotions.

    We get offers for help from friends & family, but most think it’s like taking care of any other child.
    I’m grateful to my mother-in-law, but she’s getting up there in age & Maxx is getting up there in weight, so that’s not a good combination. One of my sisters-in-law is great with him but they are usually so busy with functions for one of their 3 kids that I feel ‘GUILTY’ leaving Maxx for extended periods of time with them.

    My family offers to help, but most of the time during other conversations, all I hear is how busy they are with their kids that the last thing I want to do is add another task to their busy schedule.

    Distance is another issue. We live in the suburbs, they live in the city. Packing up any child for an extended stay is a chore, imagine one with special needs.

    And last but most important, his therapies. Our schedule basically revolves around work & his therapies. He goes to school from 9am to 11:30am. He gets OT &/or PT tharapy daily from EI. We also take him for additional OT & PT therapy on Saturdays (thru insurance). The only day we have to spend any QT with him is Sundays, & that’s between any errands we have to run or housework that needs to get done. We feel guilty not just dropping him off with relatives, but not being able to spend QT with him when we are home!

    Don’t get me started with the Holiday run-around!!!

    BTW: Maxx recently had the croupe also, developed infection on each ear from the associated congestion, & now can’t seem to shakeoff the congestion. Laura is actually taking him to the Dr this afternoon to make sure nothing else is brewing.

    BTW2: I hope you know how inspirational is postings are to us, & I’m pretty sure to MANY!!!
    If you didn’t, NOW YOU KNOW!!!
    We go to Nathan’s page on a daily basis just to check up on his progress & to read your inspirational postings (you’ve made me cry at work numerous times!!!)…unfortunately we don’t always have the time to post responses. As you can see from this one, the responses would be lengthy on a daily basis. I had a bit of time today so I just went for it.

    We love the pix, vids, & ALL the info you supply also.
    So from the BOTTOM OF OUR HEARTS,
    MANY, MANY, MANY THANX for ALL you’ve done & continue doing with this inspirational & informative website.
    GOD BLESS NATHAN WITH CONTINUED HEALTH & PROGRESS, & HIS FAMILY FOR THE LOVE & SUPPORT HE RECEIVES!!!

    Sincerely,
    Maxx’s Dad (aka: Marcos), Laura, & especially Maxx Matos

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