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.