Let’s face it: when you have a child with autism in your family, you can never have enough money. Never! The majority of interventions for our kids are costly, whether they are therapeutic, behavioral, medical, biomedical, or nutritional. Autism is expensive, and too many times I have felt guilty because I haven’t been able to do this or that intervention for my son.
A couple of months ago, when the Powerball lottery went over $500 milliion, I did something I had never done before. I bought tickets. Okay, so maybe it was unrealistic, but I had all of these ideas about what I was going to do with the money. I was going to get my son the help he needs and deserves. I would research all of the autism doctors in the world and fly him out to the one I thought was the very best. And I was going to do the same for my autism mom friends, far and wide. I was going to send money to the ones that I know that are like me, who can’t afford to do everything we want. I thought out exactly how I was going to do it and who were the first ones on my list. I thought about opening a new autism center here in my city, a sort-of Chuck E. Cheese-like, sensory-friendly, autism community center. It was going to be both therapeutic and fun. And I prayed about it and I told God about all of the wonderful things I would do with that money. “Please, God,” I told Him, “let me win.”
Well, of course, I didn’t win.
A few days after it was over, I sat in church and I listened to the pastor talk about that lottery, and although he didn’t exactly condemn it, he did say that money couldn’t buy happiness and that HE would NEVER buy a lottery ticket, blah blah blah. So without even really condemning it, I felt judged. Rebuked. Sinful. Ugh.
Then I thought about it some more. I thought about all of the stuff my son needed and couldn’t get. I thought about all of the debt we were in because I was always trying to buy the right foods and supplements that help ease his pain. I thought about all the times I heard the pastor preach about how bad debt is and how it isn’t godly. And THEN, I thought about all the ways my church didn’t help my son or my family.
And I stopped feeling guilty.
You can read in the book of Acts, when the first church began, it was different than churches today. People didn’t write their check for 10% and then forget about the needs of their brothers and sisters in Christ. They were ALL IN. They sold everything they had and brought it to the church, and the church distributed it evenly among the members, according to the needs of the members. Everyone got what they needed. I often find myself wishing for that Acts church. What an amazing place that must have been! If our kids had been around back then, they would have gotten everything they needed. Because, let’s face it, we have some pretty tough financial burdens. Our families have a lot of needs.
Our families depend on money for our kids’ health. They need to eat whole foods with as few pesticides, additives, and junk as possible. Fresh, organic, whole food, not the processed junk our society is so fond of today. That’s not even mentioning the food allergies they have – and buying food without gluten or casein, or nuts, or eggs, or soy – that’s when food gets really expensive.
And then there are the other expenses. Therapy. Doctors who are trained in autism. Lab tests. Supplements. Most of these things are not covered by insurance. They are so important, yet for many of us, anything but the bare minimum is simply out of our reach.
It hurts me sometimes. I don’t like being poor! I wish I could fly my son all over the country, seeing the best doctors, getting all the necessary lab tests, testing for this problem or that one. I wish I could buy everything organic and fresh and make all of these beautiful made-from-scratch, organic-only meals. I HATE that I can’t do these things. It makes me feel GUILTY. I want to be able to do everything I possibly can to help my son. I want to be able to search for every possible issue and rule out anything that I can, seeking out the right test result that might give me a better clue as to how to help him not to hurt so much, and to help him not to self-injure. But I can’t. It just isn’t possible.
But even though I can’t do everything I want to do, doesn’t mean that I shouldn’t be doing something. There are things I can do, and as long as I am doing that, then we are getting somewhere. I can’t fly my son to New York to see the latest greatest biomed doctor, but I can make sure that my son doesn’t get any gluten in his diet because it causes inflammation and makes him self-injure. I can’t buy him all organic food, but I can buy a few organic things at times, and I can buy more things fresh instead of processed. I can’t go to Son-Rise, but I can buy a book on Floortime and spend as much time working one-on-one with him myself. I have a good friend whose finances are even tighter than mine, but she knows that if she buys her kids a bag of apples to snack on, even if they aren’t organic, it’s better than snacking on Doritos or Goldfish crackers. She does what she can for her kids. Her very best.
So I just want to encourage you guys out there who are in a similar situation to mine. Don’t waste time and energy feeling guilty because of what you can’t do. Instead, embrace and practice what you can do. If the only thing I could do is keep my son off of gluten, that’s a big thing, because it helps him tremendously. It keeps him more comfortable. Remember, money does not buy recovery. Could it help uncover some of the answers to some of our kids’ issues? Yes, probably. Can it help you be able to seek out the right treatment until you find “the one”? Maybe. But there are no guarantees. I know several parents who have spent way more money than I have that aren’t that much closer to recovery than we are. And some parents have recovered their kids very cheaply. Just do what you can. You never know. It might be the simplest of interventions that is the catalyst for your child’s recovery.
I’m trying to resolve this in my own heart, but I can’t promise that I won’t be buying any more lottery tickets. Hey, a Thinking Mom can dream.
And if I win a mega-jackpot? Look me up. I want to help. We’ll make something happen. 🙂
P.S. – Do you have any thrifty diet/biomed/therapy tricks you’d like to share? We’d love to hear about them!
P.S.S. – TACA has a great guide on their website on doing the GFCF diet on Public Assistance. Check it out!
For more blogs by B.K., please click here.
Something ironic for u all to think about:
Dec 2011 my hub lost his job. He was the breadwinner & I the SAHM. Before the company collapsed, they downsized so we knew it was coming. But they told him he had about 6mo left. Two wks later-see ya! They screwed him (&others) over big time. Right before Christmas! We got by, sometimes barely, with the help of my wonderful parents but money was sparse. It was def very hard to keep up with all the diet/supplement/therapeutic expenses that were going toward my sons recovery. At that point we had been seeing steady progress. There was no way I was going to cut ANYTHING from the recovery budget. No way! We sacrificed $$ in other areas to be able to afford his ‘stuff’ so that nothing was altered. But for the past few yrs, I was often exploring new options, researching additnl supps to try & adding them to his regimen. I couldn’t just go decide to try something new or add any new protocols now. Everything had to stay exactly the same. For about 18mo. My hub never found a new job (about 3months ago we began running our own business). But the job search, the money, the bills, debt, expenses, family issues…we were stressed out big time and for the first time it wasn’t the autism. Started to realize that despite our current situation, seems like we have been celebrating a lot of accomplishments lately-my son achieving certain goals, overcoming obstacles, gaining difficult skills, doing amazing in school, improved behavior, talking, talking, TALKING & MORE TALKING! Then it hit me- it was the time. TIME! This was the longest length of time we waited to see if&how things were working to help him. I couldn’t make any changes due to the money factor but I sure as hell could stay dedicated & continue what we were already doing as diligently as possible. And it worked! My son’s biggest leap took place during the 18mo period we were the most broke! Go figure!
That’s biomedical autism recovery irony at its finest, huh?
Ah the lottery fantasy – – I buy tickets almost every week. Just thinking about what could be done with the money is entertainment enough for me to justify the cost. Think about the political clout and lobbying in Washington we could buy as well (and research we could fund) if someone hit the “big one”. Maybe if we all pool our collective karma and prayers that an autism mom wins (any mom who would do the right thing) it would do the trick!
Forgot to click follow!
I buy Lottery tickets every single week. I don’t feel guilty either. I am hopeful. I need my special needs complex. My destination location that will support the whole thing. Zero entry pool, music room, library, therapeutic gym, garden, horses, family grants, etc. etc.etc.
I have the location chosen and a product line in mind. I have an engineer and CFO chosen too. Now…….come on LOTTO!!!
I BELIEVE!!!! We would make such good lotto winners! 🙂
I love that there are so many out there wishing the big wishes for their kids and others. I visualize a healing center (and that’s just the beginning)… vacation spot, etc. — all free to all the healers out there. Gotta go get a lottery ticket… 😉
Lottery Dreaming! That must have been some cosmic wave length if we were all having the same dreams – lol. It’s pretty sad when I look at the lottery pot of 10 million and think to myself that it would even begin to cover a portion of the “need to have” for my family and the “want to have” for my community.
Money poor at this house too but I also struggle with the issue of being time poor. If I gave him 24/7 1:1 attention it still wouldn’t feel like I was giving enough. Autism is a mean bitch. She steals you money and your time.
Next time, one of us is sure to hit that jackpot. 🙂
speaking as a pastor’s wife… i would be extremely upset if my husband ever painted something with so broad a stroke! money is a complex subject, and God certainly does intend for us to use it to His glory. the lottery money is not an exception! (i’m also speaking as an autism mom, and i believe that wise, careful & prayerful treatment of my daughter’s health is glorifying to Him- whether it’s paid for by the lottery or my husband’s paycheck.)
you asked about money saving ideas… this isn’t a ground breaking one, but i have begun asking for help from my friends- can you make this GFCFSF muffin recipe for us once a month? can you bake a loaf of sandwich bread for us? that’s the church being the church for us in a very real way, and it gives them a specific way to love us when they really have no idea what we’re really going through.
Hi Rachel! That is a WONDERFUL idea, I love that!!
I think you are right on about it being a broad stroke – I think in this case the assumption was made that anyone who buys lottery tickets does so only because they are lusting for material possessions, which we know does not buy happiness. I think the issue among various pastors who think this way is a general lack of awareness about what is going on in the lives of their parishioners, and in this case, it just made me even more aware of how out of touch the church can sometimes be! It was never meant to be that way. It was meant to be quite the opposite, actually. 🙂
A few years ago I had a college assignment for a writing class. It was a ‘what would you do with a million dollars’ essay. Other students were talking about homes and cars and trips and here I am praying for an HBOT chamber, infrared sauna, therapy center. Ahhhhhhhhh how things change when you have chronically ill children.
One day… 🙂
I was going to mention TACA of course – tons of resources on there, including diet on a budget, how to get things covered by insurance, tax benefits (many are unknown about), just a ton of ideas.
Love ya girlie….and little man is covered should I ever win big!! 🙂
Of course – that probably means I should start playing the lotto. 😉
DO IT!!!!! LOL….and thank you. 🙂 Love you Jackie!
I buy lottery tickets with the exact same thoughts in mind 🙂
Oh Melanie, I have said that same prayer! I don’t want exotic vacations, fancy cars and houses. I want recovery! It upsets me to see celebrities with purses/shoes that costs thousands of dollars and think how I would use that money more wisely… Maybe a little jealous. I do what I can within my budget but I want more!
Meeeee too. I cannot even follow celebrities anymore. I have no desire to. My reality is so much different from theirs, and so are my priorities. Although I must confess, I do wish I had an exotic vacation. I’m tired! 😉 <3
You read my mind!!!! These are exactly the feelings I struggle with myself!!! It can be so frustrating to have the limitation of lower income holding us back from doing more to heal our daughter! You are right though, we do need to stop feeling this way because ultimately who does it help?? NO ONE!!!!!!! In fact it more than likely wears us down and that is the last thing that we or our children need! I think it definitely is a process but I vow to try my hardest to let go of that guilt and know that my daughter is still getting a clean GFCF diet and she is getting CEASE therapy that is helping her TREMENDOUSLY-that is what WE can do and she is getting better…isn’t that all that really matters?:)
That is EXACTLY right. EXACTLY. Gotta let go of the guilt. We are doing our very best. 🙂
I also buy the tickets when the jackpot is high as that is not something I can indulge on the regular. But I had the same plans with my money! Thank you for this. It sucks being poor and doing this alone and in the beginning, I felt so guilty about what I could not afford because I had just met all these wonderful parents that had done SO MUCH! But sucky as it was I did what I could. LoRenzo is getting better and I’m not doing much but diet and prayer. Now, I fight guilt over his gains with so little intervention when I see other parents that I admire who have done WAY more.
I really do think God gives you everything you need. <3 So happy LoRenzo is getting better! <3
Right back at ya! If I win, I will be there for you too.
YAY! Thank you! 😉 <3
I totally agree. Sometimes the thing that helps the most is the least expensive which is why I love homeopathy. We have spent $200 in the last four months and gotten better results with our son than over the last 8 years spending 150k. Of course, you need to find a reputable homeopath and not all of them are cheap but most people that have looked have found a good reasonable cost homeopath. We had pretty quick results, bit usually it takes a little longer so if you want to try, be very patient as it takes time to find the right remedy. We have now been able to discontinue my son’s Risperdal (after 5 years if trying to get him off with no luck) and decrease supplements so we are saving other monthly expenses…amazing!
Our cheapest intervention has been our best, also! You just never know. Way to go on the kick Risperdal, that is AWESOME!! I am so thrilled for you! 🙂
I did the same thing last year. I bought a ticket and dreamt of the facility I would open here. How I would help everyone I could heal their children and get out of my own huge debt from trying so many things.
Next time, if I don’t win, I’ll be hoping you do! <3