Cheaters never win

Sometimes I feel “ripped off” or “robbed” because of the way things have rolled out in my life with Maclain. I know I have much to be grateful for, but there are certain days where you can’t help but feel that way. I have met a few parents who feel the same way, and then others who take it one step further, and assume that they are “owed” something because of the hardships they are facing. Well, sorry, but having a child with special needs does not give you a sense of entitlement, nor does it give you permission to scam the system, or take advantage of people’s charitable inclinations. 

I want to say that I do not think it is ok for anyone to take advantage of their situation by exaggerating the truth, or by guilting people into helping.

If you want to have a fundraiser, go ahead. I encourage that. Many special needs families have alot of expenses that the average family does not. We ourselves have hosted a garage sale every year to help raise funds towards Maclain’s camp costs. And we have been the grateful recipients of the generous donations from others via third party fundraisers. But we have never been anything but honest, and we have never been greedy. We are very clear about our costs for Maclain, and what we are saving for, or spending our money on. If camp costs 3k, we don’t say it costs 5k. We don’t list one time costs as ongoing, and we do not list equipment needs if they are actually covered by the assisted devices program. We don’t play up his disabilities to tear at the heart strings, his condition speaks for itself. We have also chosen to pay it forward with some of the money that has been donated to us, by either helping out another family, or giving some to a registered charity. We also don’t claim to be “bringing awareness” to Maclain’s condition. If we were raising money for that reason, the funds would be going directly to an organization that does just that. We raise money to help us with the extreme finanical burden that having a child with special needs can cause. And then we raise money for THREE TO BE, in the hopes that one day we will make a true difference for children with a neurological disorder.  So if a family with a child, who needs equipment, or therapy or a specialized recreation program wants to host their own fundraiser, go for it. I have seen many beautiful and needy families benefit greatly from the extreme generousity of others. But please be honest in your financial goals, your child’s needs, and your reason for needing money. It’s just the right thing to do. I would also appreciate that if you come across organizations that provide funds to families like ours, that you share this information with fellow parents in need. Nothing worse than someone who uses information from another parent to secure a new piece of equipment, or to attend a camp, but then doesn’t return the favour. This is not war, we are not enemies, and we are not in a competition to the death. We should be helping each other out, because we know what each other is facing, and the challenges that we have.

I would also appreciate that those parents who lie to get more money from the government, or charitable organizations, or private donors, stop doing that. I know it is frustrating to need financial assistance, and to not qualify for it because you make an extra $10.00 a year on your tax return which puts you over the income bracket. But when you take advantage of a system ( although a much flawed system) that is designed to help people who need it, you are taking that opportunity away from a special needs family that truly needs those funds, or care. And no amount of justification you give yourself makes it any less wrong. We have been on a wait list for over 4 years to get funding, and we are not eligible for respite dollars because Maclain is not medically fragile enough. It is tough, but instead of trying to mess around and spend time finding ways to scam the process, I would rather focus my energy on trying to advocate for change so that everyone benefits.

It can be easy to adopt the ” I don’t care, I am looking out for my family first, and will do what I have to do” attitude. But remember that the reason why we have some of the things we do, is because 5, 10, 15  years ago, the families before us, decided to make changes, so that families in the future would have what they didn’t have.

I would personally rather do without, even if it means that Maclain has to wait for a piece of equipment, or miss a session of camp,  then to know that I took advantage, cheated, or compromised my ethics to get something that I was not truly entitled to recieve, And just because everyone else is doing it, doesn’t mean it is right.

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3 thoughts on “Cheaters never win

  1. There are so many days when you think everything is unfair and why me or us. You have been and will continue to be a strong and loving parent and wife. The one comment made to me and my children when initially faced with such a tragedy helped me to decide how I would handle things. “from this moment your life as you knew it has changed forever. What you choose to do and how you choose to handle it is up to you.” There are so many people and families that choose to wait and expect to have someone or some source get them what they need. At the end of the day it has always been clear that we must accomplish what needs to be done by ourselves. We are all grateful for the help that we do have but ultimately we are the beginning and the end of the day.
    It is very obvious to me that you have accomplished so much and you have found a way to maintain a normalcy for you family. Even though I am facing all these issues at the later part of life I truly understand all that you feel. I feel blessed that I have such wonderful children and their spouses and Ted and I keep this close to our hearts. When we feel down and discouraged we look to all the goodness in our lives.
    I have no doubt that the strength and persistence that you have will continue to sustain that wonderful family you are blessed to have

  2. Do you think we could get enough people together to start inundating our MPP’s with letters. The healthcare system is not universal. It may be only my experience, but I feel like we are paying more in taxes, yet the quality and the amount of services continues to decline.

    • HI Vickie

      I absolutely think that we can get something going with a letter campaign. It is actually a project that we are doing some work on and we hope to be able to bring something to the parents soon. There is so much that needs to change, and it is true that there is power in numbers.

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