$200,000
That’s how much Sally Leiverman of Eden Prairie (MN) says that her sister has spent on therapies (”special education and detoxification”) for 6-year-old Ana, who has autism. Sally Leiverman is organizing a fundraiser to raise $89,130 for Ana and also for a non-profit organization that provides services for special needs children, the Eden Prairie News notes.
I’ve never added up the sum total of all we’ve spent on Charlie—-things can add up and up. Is there a limit to how much you can spend, and should there be?
Tags: asd, asperger, autism, autism spectrum disorder, children, eden prairie, fundraiser, Money, pdd-nos, Psychology, Treatment
13 opinions for $200,000
jonathan
Feb 7, 2008 at 2:11 am
yes, there should be, my parents spent thousands on therapy and special education in the 1960s before IDEA and i have had to retire recently in my early 50s since it was so hard making a living. I have never had a girlfriend. The money could have been spent on better things or on money to help me financially since i don’t know what the future bodes for me when my parents are gone. These therapies and special ed did not help. Parents throw money at autism, hoping to solve it or at least mitigate it, but the sad truth is not much can be done. There is no point in throwing good money after bad.
Melissa
Feb 7, 2008 at 12:15 pm
I have two children on the spectrum, one is covered through the state (autism) and the other isn’t (Asperger’s). The costs are exorbinant and I couldn’t imagine having to pay double. We’re not just focusing on the here and now, however. We are also looking to the future and the days when we aren’t around.
I do think that for many families the answer to this question is no there isn’t a limit. For us, it is a matter of balance.
Insightful post, thank you.
Brett
Feb 7, 2008 at 1:09 pm
All parents, to varying degrees, spend a lot of money raising their kids. Piano lessons, sports, and on and on.
As the parent of a competitive gymnast, I could tell you stories of lives disrupted and fortunes spent by parents who will do anything to get their kid into the Olympics. When you hear those stories on the news, it is usually along the lines of, “Wow, what great parents, sacrificing so much so their kids can reach their dreams.”
But when you hear it in the context of autism or some other “negative”, the response is, of course, more along the lines of, “Wow, those poor parents, they have to sacrifice so much so their kids can reach their dreams.”
The same thing, only different.
Mrs. C
Feb 7, 2008 at 1:57 pm
I have six children, and am a stay at home mom. We homeschool two of our children (one on the spectrum). There just *isn’t* any money to set limits on, you know? Basically if we can’t get something for free or very low cost, it isn’t happening.
If I had lots of money, I’d get ABA therapy for my two younger children just to help the kids get a good start on things. I’d get some job training for my 12-year-old and help him figure out what he wants to do later.
I could easily see spending a great deal of money on therapies if I had, say, an only child or just two.
Regan
Feb 7, 2008 at 5:30 pm
Is there a limit to how much you can spend, and should there be?
Like it or not, there may very well have to be.
It could be different if Eleanor was our only child, but we have another daughter and we need to have money to help her get started in college. We are close enough to retirement that cashing in that money doesn’t seem prudent. There has to be an emergency fund. Selling the house for $$ isn’t going to happen since this starter home is probably going to be our retirement home. This is a function of how much we have spent to date. This is the girls’ home and it is important for us to have this for them free and clear.
I know people that spend, and I know people who ask for, $100K/years for therapy. I was sure that that at least part of that must be covered by IDEA or insurance or…, but the feedback that I got was that it was out-of-pocket. That’s above and beyond our gross annual family income and not even imaginable; also if the outcome is variable then it’s a substantial gamble.
We pretty much cut everything to the bone for the first 5 years but there is an upper limit that we cannot cross.
Kristina Chew, PhD
Feb 8, 2008 at 3:09 am
We’ve had cycles of being able to spend and then cutting it “to the bone”—-but this has instilled a “DIY” attitude in us to do things on our own, learn as much as we can, get things done. I think this has ultimately been very good for Charlie (and for us) but, well wearying.
Regan
Feb 8, 2008 at 3:17 am
We do a lot of DIY and it’s not a strain–in fact I also believe that it has been good for Eleanor and I have learned ALOT about speech, teaching, well, all kinds of things, but there’s a learning curve. It was an expensive one…and not one that would be permanently sustainable.
Now the tough part is figuring out what happens after 21, vocational training, independent living, etc. I suspect the costs for that as a DIY might beggar that for children.
Kristina Chew, PhD
Feb 8, 2008 at 3:27 am
I was just saying to Jim that I am thinking there is even more to do after 21 to get Charlie ready for work and independent living and more.
Joseph
Feb 8, 2008 at 2:58 pm
I don’t keep count. We might spend slightly more on our autistic kid than on our non-autistic kid. That’s not exactly clear. Kids expenses are high in general.
Daisy
Feb 8, 2008 at 9:20 pm
I don’t keep count. Well, we do keep receipts for tax deductions, but those are more often for blindness-related expenses.
Kristina Chew, PhD
Feb 9, 2008 at 12:36 am
I wish I didn’t have to!
John Bowdige
Feb 20, 2008 at 10:29 pm
Reading all the above comments re-affirms my gratitude for living in a province (in Canada) that provides some government funding to cover therapies for our son. When we initially received the diagnosis we thought that there was nothing we wouldn’t do, nothing we wouldn’t spend to make sure our son got all that he needed. As time has passed, and we have woken to reality, we have come to realize that we have to be more reserved in our enthusiasm. Our son is 4, and making good progress, but it is beginning to become more apparent that we need to plan for his future. We take some consolation, but do not put all our hope, in continued research and treatment alternatives. We also are mindful of the increased awareness, though there seems to be less financial/social assistance for those in need despite good financial times in the area in which we live.
As time passes from receiving the diagnosis, especially at a young age, reaction evolves into the necessity for balance and sustainability. Though this is never easy and can be unbearable for many and is something I have wrestled with extensively. The thought of not being able to provide the one thing that may help your child achieve their full potential is heart-wrenching and almost beyond parental comprehension.
Financial Pressure and Parental Attitude « ASDinfo
Feb 24, 2008 at 4:42 pm
[…] for his child’s autism. There was also some similar discussions earlier in the month on other blogs that related similar stories regarding the costs of […]
Have an opinion? Leave a comment: