How much does it cost to raise an autistic child? (#457)

“How much does it cost to raise a child?”
Buscoming_1
This was the theme of a talk during Back to School Night that I attended at Charlie’s school. I was a little late entering the gym/cafeteria/auditorium where parents and staff were gathered: Charlie had a 6.30pm piano lesson and I had been talking to his teacher about the latest innovation: A sheet of music with the treble cleft and 4/4 time indicated on the grand staff, and then the notes still labeled with the letter names and the number 1, 2, 3, 4, 5 above them, to indicate which finger Charlie is to use (instead of using only his index finger).

Charlie had played surely and strongly, reading off the notes and pressing the keys, his eyes bright—-after the usual full day of school and an ABA session at the end of which, the therapists and I were almost aghast at how clearly he spoke: “Come pway with me! Putditt oh-ver here.”

How much does it cost to raise a child?

The speaker cited a figure of something like this. I would hazard, Charlie has “cost” us a bit more: Today, there were extra ABA sessions and the 1/2-hour piano lesson. I did buy him a set of K’nex online from Toys ‘R’ Us yesterday, but that was “free,” courtesy of a gift card I found in may bag…….need I begin to count all the hours of speech therapy and more annually accrued, the “out of network” pediatric neurologist, the general costs of feeding a growing boy whose shoe size seems to change a few times within a year, a regular supply of squishy balls…….in previous years, there were, too, the front door that had to be replaced after Charlie broke the glass with his forehead and the non-flushing toilet after he put various plastic figurines into it (imitating how the Teletubbies jump down the hole to their Tubbie house at the end of the show)—this happened several times……..such are the wages of autism.

Tonight at Back to School Night, the “payback” described for all the six-digit figure amount that parents are predicted to spend on their child included—besides the references to sticky fingers, being some little guy’s hero, and noodle necklaces—the first dates and that momentous moment when Junior gets behind the wheel.

I was standing against the wall a few feet, as it happened, from the PTO officers whose ranks I had once been in, as co-president and newsletter editor at Charlie’s previous public school. I thought about how I had tried to include the three of us—one small autism family—at his old school; I thought about the hard times Charlie had fallen into and how, yes, I would have paid anything, but not for him to become “indistinguishable,” nor to be “cured” of autism, nor to be “fully mainstreamed.”

I would have paid everything it cost for him to have school days as he had today. Balky getting out of his bed, smiling running across the grass, a five-second starey space-out before boarding the bus. An early afternoon email from his teacher: A bit of trouble transitioning from lunch—crying—asking Charlie to request a break—directing him to a puzzle—-calm. I would have paid anything to have the running-around-after-school hyper, shyly smiling, “Strawberry Fields Forever” singing (after hearing it once on the radio) boy of today. This is all the payback I need.

How much it costs to raise an autistic child—the “cost” of raising an autistic child (and I include in this the “cost” to one’s career, one’s life-plan and, if you will, one’s bank account)—it is a lot. It is worth it. It is worth its weight in gold. I am happy to be a big spender when it comes to Charlie because the payback, while often not too well defined and rather meagre according to normal standards (these, for instance), is endless. The salary I draw for being Charlie’s mother has made me rich in ways no numbers—not even prime ones—can ever represent, save for this one:

Make that

$.

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Comments
7 Responses to “How much does it cost to raise an autistic child? (#457)”
  1. Perfect Post!!! Yes it is expensive, and for me personally, it really did cost me my career starting last year after 15 years of teaching, because my new career is my children, and all the extra “home therapy” I am giving Sam myself, for which we couldn’t afford. I don’t regret it for one minute, yes it has cost us, but the outcome for us is great (my hubby travels all week, so for us, me staying home now is best)…seeing Sam GROW!! 🙂

    And Kristina, please forgive me, but I laughed till tears picturing Charlie imitating Teletubbies into the toilet. I know you hated it, but it is a cute impression in my mind (and quite creative I must add).

  2. I just wanted to say that this was a truly heartwarming post. I have been browsing through blogs all morning, and was pleasantly surprised to come across something that was so positive and upbeat. Thank your for helping me begin my day with a smile. Charlie is a lucky young man indeed!!

  3. Lisa/Jedi says:

    Once again, I found myself saying “right on!” to one of your posts, Kristina 🙂 This “cost of raising a child” mind-set is a good (?) example of how far we’ve come (?) as a society in the past hundred years. There was a time when we raised children to become contributing members of society by teaching them to be contributing members of their family… now we’re calculating the “cost” of raising them, using the almighty dollar as a comparison to their worth (!). Yesterday, for some reason, I was thinking about how much we spent, out-of-pocket, for B’s visual/perceptual therapy. We never actually totalled it up after the fact (just did some estimating ahead of time for budget purposes) & I think it’s mainly because there was no question that he would have it, that he was “worth” it. The payback was opening a door to a part of the world B didn’t know existed, & the continuing ripples include his becoming a fluent & avid reader & his being able to tell one friend’s face from another… these are not things that one can put a dollar value on. Sometimes I wish that non-autism families could have a taste of the joys (& the sorrows 🙂 of having to focus on your child’s needs on a deeper level than “will they be a good student” & “who will they date”. When I really look at my kid to see who he is, all the baggage disappears, & my love, appreciation, & admiration for him is all that matters. I wouldn’t have it any other way…

  4. The joys, and the sorrows, keep me going—-I feel lucky to be Charlie’s mother.

    Laura, after we ran out of Teletubbies, Charlie would use legos in the appropriate Teletubby colors……this was at a time when we had one bathroom….

  5. MommyGuilt says:

    Wonderful post, Kristina. I absolutely agree…the “costs” are high in raising a child on the spectrum, physical, emotional,financial…just look at my (now) Not-So-SmallBoy being shunned by his father as an example.

    Anyway, but yes, the paybacks are unbelievable…watching every new gain, new strength, new social skill, every good day, every recovery from a bad day….Each and every one of those is all the payback I need.

  6. Brett says:

    Kristina,

    As always, a spot-on post. No matter how much people try, parenting is not really an endeavor that can be looked at from a cost-benefit analysis approach.

    I am so glad to hear that Charlie’s school days are going so well. (I’ll send you a note later to let you know how Z is doing in his new school, but the short version is – FANTASTIC!!).

    BTW, I was thinking of you and Charlie and Jim last week while on travel in San Diego. Running along the beach, watching the waves and the surfers come, I couldn’t help but think how much Charlie and Z would love it.

  7. Brett, I am more than lookign forward to hearing about Z’s days at school! “Fantastic” is the word for Charlie too; he did get off to not-so-great start this morning, but these bouts pass quickly and his teachers have been beyond wonderful.

    Running on the beach in San Diego! Now that sounds like the place to be….

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