This morning I was amazed to see this headline on FOX news.
Study: Autism Puts Unprecedented Financial Strain on Families
http://www.foxnews.com/story/0,2933,459644,00.html
You can read the story here. My first reaction was to slap my forehead in mock surprise and let out a resounding "NO KIDDING?" It's taken them all these years to figure that out? When insurance companies deny therapy costs or set ridiculously low limits on therapy, like our measly 20 visits per year (try more like 20 per month if our son was getting what he really and truly needed to reach his full potential) what are parents to do? We made the difficult decision to pour every cent we had into Luke's care, without thought of the future financial impact. We felt that if we could do this until he was at least 5, he'd have a shot at independent living as an adult. I'm glad we did it, although it stinks to feel like you will never crawl out of the debt hole autism creates, especially when all the recent economic news bodes for an even tighter budget. I constantly feel guilty that I am not able to afford RDI therapy for him right now, which is what he really needs. I have bought the therapists manual and am trying to teach it to myself, so I can at least do some things at home. Now if I can just make my other kids understand why there isn't money for the things they would like to do, like sports and music lessons. They are pretty understanding about it, but I worry about how not having these extra things under their belts will effect their college admissions.
Why am I blogging about this? I feel like I am whining. I hate whiners. I try not to complain about the autism thing too much.....our son is so much more high functioning than any medical professionals predicted....we definitely were blessed with healing that many families would be happy to have. But the trouble is, the better he gets, I always want more. I always up the ante. Especially during difficult periods. Someone made a comment to me the other day "The older he gets, the more obvious his disability is." Not really what I wanted to hear, especially since Luke was obviously having a rough times with all the changes in the schedule holidays bring. Anyone who ever bothered to "google" autism and read a page or two would understand why. Anyone who had seen the movie "Rainman" would understand why (which is where most peoples knowledge of autism starts and stops). I don't know how they wanted me to respond. I fought the urge to roll off a snarky Hanna Montana style "Ya think?" I just said calmly and simply, "Yes, it is." The very same day someone else made the comment that his social scripting and lack of flexibility was just "to get attention". Newsflash: 13 of the top neurologists and developmental pediatricians in the country disagree with you. Please. Pick up a stinking book and educate yourself about autism if you really love my kid. Advocate for us to your local politicians. Fight for safe vaccines and schedules. We are too busy caring for the daily needs of our kids, we don't have time to do it ourselves. Pray for us because you have no idea how much stress and pressure autism puts on marriages, siblings, family relationships, finances....the list goes on and on. But the very bottom line, and the one sure thing is that God is sovereign over autism, and one way or another, will someday lift the burden, either here, or the other side of heaven. Of that, I am quite confident, so I move steady on. Just remind me now and then, in case I forget. And allow me an angry post now and then. Sometimes it helps to vent. But more than anything, I want to express that I know God has the best in mind for our family, and for whatever reason this includes autism. He gives and takes away, yet still my heart will say "Blessed be the name of the Lord". Just typing that now made my heart unclench a bit, so I will hit the "publish" button, in hopes that someone out there may read those words and feel their heart unclench a little.
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Tapestry of Grace
2 comments:
Let me put it another way.
Let's say you were planning a trip to Italy. What would you do? You would get a map of the county and read about the history and chart a course for the interesting things to see and do. You may pick up few Italian words or phrases to help yourself get around. You would find the best (safest) way to change US$ to the local currency. You would spend every day looking forward to your trip, excited to see new things and meet new people and enjoy new experiences.
Finally, the day has come. You get on the plane fully expecting to arrive in Italy. Only, you didn't. You landed in Amsterdam. What do you know about Amsterdam...nothing. Where do you go next? You don't know because you can't read the street signs and you don't know the language. You have no idea what the local currency rate is, nor where the nearest bank is. You're scared. You wonder "How am I going to get back home?".
You immediately jump into survival mode. Find a place to stay and get some food (find the best place in the country to get services for your child and the resources/therapy he needs). Next, mostly through trial and error, you try a few things and venture farther away from your hotel, while being reasonbly safe. (You let your child go to a friend's house for a play date) If that goes well, maybe you let him do it again. If not, then you know you can't go down that street until you know more about it. Then there is the restaurant next to the hotel. The food is delicious, but makes you sick. However, the more and more you eat there, the more and more you want to keep eating there. It's not gluttany though. Turns out, there is something in the food that acts like an opiate on the brain. This is not a simple food allergy. (Try to eliminate all foods with any trace of wheat and/or dairy on a single income. A loaf of rice bread is about $6, which is 1/2 the size of a normal loaf. Soy milk is effectivly over $5 per gallon).
However, every once in a while, God reveals to me how beautiful and unique Amsterdam really is. It's not that it's only beautiful once in a while, it's beautiful all the time, I just don't see it cause I'm too focused on the fact it's not Italy.
Our son Luke is a beautiful child who is fearfully and wonderfly made. He's bright, funny, a major schedule junkie (needs to know the next two or three events that are going to happen next). He is incredibly sensitive. He's our Amsterdam. We learn more and more about him everyday. Sometimes we're missing several peices to the puzzle, sometimes the picture is real clear.
Sorry (again) about the apparent rant. Lesli does a phenomenal job. I can only imagine that she gets her energy from the One who created it all! I pray that the Lord would continue to encourage and uplift her and give her the strength to press on.
"I constantly feel guilty that I am not able to afford RDI therapy for him right now, which is what he really needs. I have bought the therapists manual and am trying to teach it to myself, so I can at least do some things at home."
I want to reassure you about the RDI front! I did "lone ranger" RDI for about 15 months and my daughter managed to advance an entire stage (not book stage, but new computer system stage) without the help of a consultant. I started in March 2007 and blogged the entire thing, and you can see me go from skeptism to joy. By the time we did hire a consultant, I was much more confident about this being money well-worth spent (in our case, it ends up being less than $5K a year). The key is to find RDI bloggers who are adept explaining what RDI is. I found myself pouring through. Jacob's Journey explained a lot. A couple of new ones have helpful information for newbies: Remediating Autism and Mom of Monkeys. Also, I love the Yahoo group, Autism Remediation for Our Children. The Horizon's RDC newsletter often has good nuggets, too.
"Someone made a comment to me the other day 'The older he gets, the more obvious his disability is.' Not really what I wanted to hear, especially since Luke was obviously having a rough times with all the changes in the schedule holidays bring."
For us that was true. HOWEVER, our 19 year old with autism is finally making wonderful strides which give me hope she can make progress in her dynamic thinking after being stalled for years!!!!
"Pray for us because you have no idea how much stress and pressure autism puts on marriages, siblings, family relationships, finances....the list goes on and on."
Amen!!!!!!
"But the very bottom line, and the one sure thing is that God is sovereign over autism, and one way or another, will someday lift the burden, either here, or the other side of heaven. Of that, I am quite confident, so I move steady on."
I have the same view of autism. Pamela will be cured whether it be in this life or the after-life!
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