Sunday, June 22, 2008

Insight

What I am about to fill you in on - can be uncomfortable for some. There are a few things I hate to talk about and MONEY is at the top of my list.

For one, it is personal. For two, I seem to always get myself into trouble with it. For three, well it can be depressing.

I have toyed around with posting about this because I don't want anyone to think it is a "feel sorry for us" post. I really want to emphasize the issues that parents of special needs children go through.

A few posts ago, Jay mentioned that I will soon be a part-time employee. He also mentioned that more than half of my income goes to daycare costs. That is true.

When I look at statistics by our government and they say that the average family of four makes a median income of 40,000 per year - I laugh. That is crazy to me. I can't imagine how a family of four can survive in a safe residence, eat and have a car on that income. Without cable, brand name clothing, etc. it is still impossible to me that anyone could live on 40,000 a year with a spouse and two children. Then I get to thinking and realize that our "normal" is not the average.

When we read the books and attend the seminars on autism they always bring up the issue of extra cost. An average we hear is that it is an extra 500.00 per month for families of children on the spectrum. Yeah, I know our diagnosis is confusing but we we do know that Carson is on the spectrum so, we apply in this instance.

I thought it might be interesting for a few of you to see what we do incur with our treatment plan and additional life costs due to Autism.

Day care - we cannot trust that a traditional daycare situation would provide Carson the one-on-one time and attention he needs. We cannot trust that he would be okay in a large, loud room with 20 or so additional kids. Even at his school he struggles and it is only a half a day and there is a teacher and aide and 12 students max. So, we have in home care. Carson does much better in his own environment and with his own things. We can be sure that his diet is followed and know that he is safe and well taken care of. To the cost of - $1,600+ per month. Traditional daycare of two kids is estimated to be 1,200 per month. So, right there we are up $400.00+ if neither of us are running late.

Food - We do not have the luxury of the typical preschool diet. All of Carson's food is GFCF and most of it is organic as well. We shop at Vince and Joes and Whole Foods several times a week to replenish what he eats. When we go ANYWHERE we bring him his own food. For example, I made him some cupcakes for a party a month ago. The GFCF cupcake mix was $5.50 and the frosting was $6.00. In total $11.50 to take cupcakes to a party so that he does not feel left out. You can buy a whole lot of Duncan Hines for that! Carson loves pizza and we have found some great GFCF pizza for him - at $7.00 per 8 inch pizza. I would estimate that our food bill is about $200.00 higher per month than the typical preschool diet.

Supplements/Vitamins - Just this week, Jay filled Carson's b-12, and chelation script. The total for one month supply $305.00. It is possible we might be reimbursed some part of it but we cannot plan on it. Add to that the 7 or so other supplements and $20-$30 a piece per month at you have about $480.00 a month. Yes, we choose to take this approach and not all families with ASD do. We see it working and we see it as money very well spent. If we did not, we would have stopped long ago.

OT/PT/Speech - We do have the blessing of insurance for some of this but we still have co-pays and some out of pocket expenses. I would estimate we spent $100.00 per month on out of pocket OT/PT/Speech per month.

Doctor Visits - Jay and I have done a great deal of research finding the best doctors for Carson. Our first functional medicine doc was out of Lapeer and we paid for all of Carson's testing out of pocket. The Doc did not take insurance. Testing in November - $3000.00. Again, money well spent and I would do it again in a heartbeat but - that was our fence or our deck or our partially finished basement or our next family vacation! We have recently found a new DAN doc that does take insurance. We have to truck it to Ann Arbor once a month and the gas does add up but it is still much more affordable.

Toys/Therapy at home - We have purchased or gotten as gifts several things that are used as toy therapy in our home. We have a trampoline, tire swing, games, puzzles, etc.

All of what I just mentioned adds up to an extra $1,400 a MONTH (yes I said per month) of life expenses the average family does not even think about.

So you can see that for me, $40,000 per year for a family of 4 is ridiculous. Jay and I are fortunate that we have good jobs. That in the big picture we make a good living. We have a new house that we love and affordable cars. We have clothing and all of life's necessities. This is just one area of our life that we feel the hit of autism.

Again, this is not a "feel sorry for us" post. I know of other families that are struggling with much more but I am also not going to lie and say that this does not add a huge dimension of stress to Jay and I. When we think about all the extra money we could be saving it makes us sick. Nothing is more important that helping our children but it does contribute to depression sometimes.

I guess all I wanted to do is share this private part with you since you all seem so willing to listen and to care. Most importantly when you go to vote this fall, keep these issues in mind. You may feel like they do not concern you but, the truth is, Jay and I never thought they would concern us either.

1 comment:

Becky Wilson said...

Em & Jay -

Believe me, I feel your pain. Between therapy, vitamins, special toys...ugh! I completely understand, and all I can say is that you just make it work.And maybe one day we can win the lotto!!