Under The Bar: They Are NOT Angry Birds! The Fight for Funding

TAGS: Tony Manifold, special needs, angry birds, dave tate

elitefts™ Sunday edition

Here is an article sent to me from Tony Manifold. – Dave Tate

Note from Tony Manifold:  I am writing in response to Dave's request for people who live with special needs children to write an Angry Birds post. My son is special needs and I personally got a lot out of this series and I thought I would try and add what I can to help someone else. I'm a Canadian Soldier and my son is 6 years old with Cornelia de Lange syndrome. My wife and I have been dealing with agencies and fighting for funding the entire time.

About the article: In short this article contains a strategy for helping get funding/support for a child with special needs. As things vary from state to state and country to country, it contains general information and really discusses the mindset needed to succeed on that front.

-Tony Manifold

They Are NOT Angry Birds! The Fight for Funding

Reading Dave Tate’s "They Are NOT Angry Birds!" article series has been a real eye opener for me. Like Dave and many of you, I'm the father of a special needs kid. My son has a rare genetic disorder known as Cornelia De Lange Syndrome (CdLS). CdLS affects approximately 1 in 10,000 live births and leaves about 2,500 people in the U.S. with this syndrome. In Canada, where I live, there are about eight kids that we know of who have it. It isn’t exactly prevalent, and to top it off, there's a lot of disparity between cases, which presents a lot of problems when getting support. However, for my son, it presents a lot like autism, with some developmental delay and a few other health concerns. More information on CdLS can be found at www.cdlsusa.org.

There's a lot of great information in this series on how to deal with kids that have special needs. I'm going to focus on the issue that I'm dealing with right now, namely getting support for my child from various agencies. This can be troublesome enough if your child has a well known condition like Autism or Down’s syndrome, but when your child has a rare condition, it gets even tougher.

Hurdles

The first hurdle is that you'll most likely have to educate everyone you talk to. Talk to your doctors and any specialists you dealt with, and if need be, do your own research so that you can properly explain your child’s condition. Many of the people you talk to will be bureaucrats, who will look at your child and want to fit them into a box. When they don’t, they will deny support. These people are most often not bad people; they just deal with such a wide variety of people looking for support that they need to justify expenses to an ever-shrinking budget. If you can educate them, they may be able to help you and your child.

Next, you need to make your case as strong as possible. Just like in powerlifting, you need to shore up the weak points. If you're anything like me, you have no idea what these are when it comes to dealing with government agencies. So what do you do when you have no idea why your squat sucks? You get outside help. The same thing goes for getting your child support. Use things like Facebook, or other web resources, to find other families with similar situations to yours and get advice. If you have any existing resources (like doctors) talk to them about how to get access to more. Also, there are many foundations and other non-profits, who assist parents in getting support for their child. Exhaust them all.

Finally, we do what we have to do every day in the gym – we get under the bar and push. We push until blood weeps out our eyes if need be. You keep pushing until something moves. If it doesn’t work, go back and get more info, get more help, get more advice, then push again. It sucks when you feel like no one wants to help your child. You will feel helpless from time to time. But if you keep pushing and keep bringing up weak points, in your case, you will get somewhere. No one else can advocate for your child like you can.

Support

Not only will this approach help you towards getting support for your child, it will help you feel good about yourself as a parent. One of the worst traps parents of special needs children fall into is that they feel they're doing something wrong. The hard work you put into supporting your child will remind you that you are doing everything within your power to help your child succeed. Treat each success as a PR and celebrate it. Each step you take towards getting your child the support he needs, is one more step towards your child having the most fulfilling life possible.

- Tony Manifold

If you live or work with  special needs we would love to hear your stories and thoughts. Please post below. If you have ideas of would like to submit a “They Are Not Angry Birds!” post, please e-mail your ideas to rcassano@hotmail.com with the title: "They Are NOT Angry Birds!" in the subject line, or post to our articles submissions page. If you work within the system, we will keep your name and information private, as we have with the Special Education Meathead. –Dave Tate


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