When you have a child you know that that child is going to cost you thousands and thousands and thousands of dollars in their lifetime. You can bank on it (pun intended). What I was never prepared for was the mountainous pile of medical, equipment and therapy bills that would accompany the traditional needs of my kids. When you get down to it Gracie is slightly cheaper to raise. ;D Her equipment is smaller stuff. Chewy tubes, body socks, swings, brushes, compression garments, etc. We do have the extra costs of her doctors and medications because her reflux is fairly severe but it isn't awful. Abby is definitely our more expensive child. Each year we have had her we have filled two huge manilla folders with her receipts from doctors visits and tests. Thank God you can deduct that from taxes. Then we have therapy costs. Equipment costs. Medication costs. Wakers. Helmets. Braces. The expense of driving back and forth to Philadelphia for her specialists. You add that up and you are well into the thousands. It is mind boggling.
We have insurance. I get the privilege of fighting with them regularly. The problem is that we are in that gray area. We make too much to get any help with her medical coverage. Her disability and diagnosis are rare so no traditional aid groups want to cover her. So we are on our own. We have to make tough choices every single day. Do we invest in the braces or the drop down rails for the stairs? Do we get a bath rail or a rail outside on our front step? It is so frustrating. I don't expect any agency or governmental group to help us. It's obvious they won't (Although it seems that everyone and their friggin mother can get a handout from the government EXCEPT us. Pisses me off.) Even groups like DDD that are set up to help families like us give us the runaround.
I guess the point (other than my usual venting) is that there is so much more to special needs than meets the eye. What you don't see is that mother who spends all of her free time making doc appointments, fighting with insurance and scrimping and saving so she can buy her child the things they need. It sure ain't easy. But I guess God only gives it to who can handle it.
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Typical families don't understand, but other special needs families do. My GREATEST resource has been other local special needs moms. I have gotten lots of hand me down strollers, equipment, and advice on doctors and tests and medications and therapists from other moms, and no one else! They are also a great resource in finding the funds to help with these things. You'd be surprised what you qualify for just based on the diagnoses you have so far. We also have private insurance and make too much to qualify for any other type of low income assistance. However, in our state there are "waivers" that, based on disabilities that kids can qualify for Medicaid regardless of a parents income. Many of these have 3-5 year waiting lists - maybe your state is better. So, this is what we have - we have a waiver that is for kids with a life limiting illness/condition - it had no waiting list. Handout, yes. But we would be bankrupt without it, and I'm thankful every day. Outside of that, there is a non-profit who "exchanges" equipment of all kinds, so people that are done with theirs give it to this organization and then they give it to people who need it. No income level required. Anyway, other families do a lot of this on their own, and can help too - you'd be surprised who you can connect with. Local people are best because they can be specific. And, they can commiserate with you with all the struggles that go along with having a special needs child. I just met a woman last night who also has twins + 1, and one of her twins has seizures and delays and issues, and it was nice to talk to someone who got it, even the twin thing, even though we're very different. Oh, and one other thing, you probably know how I feel about the "God gives this only to people that can handle it" but if you don't, you can read my blog posts about it - I'm not sure I CAN handle it, and a lot of families can't. So, I don't believe that only people than can handle it get these situations. But, I know you're doing your best for your kids, and that's all that matters! Hugs!
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