Sunday, 11 August 2013

What Do I Deserve?

What do I deserve?  As an autism mom, a wife, a working woman?  That is such a difficult question.  I am accustomed to putting my needs last, to funneling all available resources toward the needs of the kids.  Many parents feel this way, it’s just that in our case the needs are greater, and well, more expensive.  So I have tried to become ok with the status quo- the clothing I already own, the furniture we have always had, haircuts every 6 months or so, and reading the same books over, and over, and over.  And usually that’s just fine.

There has been one area of my home where I was unable to do this- the dining room.  To me, a family’s eating area is super important- it’s the place where the family gathers every day, the place where I often work after the kids come home in the afternoon, and the place where I work with Jack on his fine motor tasks.  And our dining set was on its last legs.  We bought our set as an antique about 9 years ago when we were very first married.  Even then, I didn’t like it.  But it was in good shape, it was a full set, and frankly, it was cheap.  I figured that we wouldn’t eat on that table much anyway once we bought another home- that we would eat in the kitchen.  That didn’t happen- and in the past 9 years, this “antique” has endured quite a lot of abuse at the hands of the entire family.  The chairs have been “tightened” and wood-glued back together countless times, I have recovered the stained seats, and Nate even knocked one chair down and broke it at one point.  I hated my dining room- to the point that when John and I were having marital problems my only slightly happy thought about a potential separation was that maybe he would take the hideous dining set.  Pretty sad, huh?  The breaking point came when we had company a few weeks ago.  I was setting up the table for the meal and found myself arranging the chairs strategically so that John and I would be sitting in the ones most likely to fall apart during the meal.  I didn’t want my guests falling.  Clearly it was time to make a change. 

Obviously we do not have bunches of money lying around to purchase new furniture.  It was more of a pipe dream.  But I would peruse craigslist on a regular basis looking at used furniture and daydreaming.  I always wanted a round table- that’s what I grew up with.  I was used to my feet resting on the pedestal; I had “fond” memories of me yelling at my mother as she quizzed me before a test (at our table) that she was “doing it wrong” when I couldn’t answer a question (ha).  It just felt like home to me.  So after looking for about 6 months, I finally saw a table and chair set that looked just right- and at a very reasonable price.  It was also high quality- Ethan Allen (also what I grew up with).  I broached the subject with John and after much discussion, he told me to go for it.  And I did, and brought the chairs home.  While I was there I saw the most beautiful china cabinet in the owner’s home.  I had seen it once before when I liked another set, but the set was white, and there was no way it would work in our home.  The owner agreed to sell it to me, for a price that in no way could I rationalize.  I felt like a petulant child- but I waaaaaant it!!!!  Perhaps that’s why I went back to my childhood technique for getting something I wanted- working for it.  My parents handed very little to me when I was a child- I worked for what I had.  If I wanted trendy clothes in high school, I had to use my own money; same went if I wanted a car.  When I was in third grade, I shoveled driveways for 2 days straight to earn the money to buy a cabbage patch preemie doll.  Loved that doll more than any of my others.  So I formulated a plan- I had already decided the table and chairs were worth it to our family- for safety purposes if nothing else.  The china cabinet- I couldn’t really justify it.  I can’t work overtime because my job is salary.  But….I could sell things.  Clear clutter and make some money at the same time.  So I set about doing just that.  In the span of a week, I sold our old dining room set, an old washer and dryer that were sitting in our garage, the elliptical I never use because I run now, the double stroller, and the play kitchen.  In the end, I earned all of the money needed for the china cabinet.  The gracious seller's husband helped me move it and the table- which was no small feat.  And now when I walk into our dining room I feel complete and utter peace.  It is exactly as I always pictured it- and I avoided the all too common guilt I experience when I do anything for myself.  I earned this.  And I love it as much as I did that cabbage patch doll.

What does this have to do with autism?  Well any autism or special needs parent could answer that in a heartbeat.  Once your child is diagnosed with special needs, it becomes difficult to ever picture doing anything for yourself again.  In general, I would be willing to sit on those rickety chairs for a lifetime if I knew that money could go towards an effective treatment for the boys.  But if I give every single ounce of everything that I have to my sons, no matter what the outcome, how am I treating myself?  I work hard every day, both at my job and with the boys.  At some point, I have to allow myself to have something too.  Something that makes me smile every single day, something tangible.  It makes it easier for me to handle the fact that Nathan started playing peekaboo with me for the first time in two years this weekend- and that this is huge progress (he’s almost four years old).  It helps me deal with the fact that Jack is going through yet another resurgence of his airplane obsession, accompanied by 5 to 6 daily meltdowns when he can’t find one, or something breaks, or I tell him he can’t keep his Lego plane in his bed while he sleeps (for obvious reasons).  There is that little voice in the back of my head screaming mitochondrial cocktail!!!!  Today I am telling that little voice to shut up.  Yes, so far every compounding pharmacy has quoted me $250 a month or more to make this for Nathan.  I am not going to do it.  Unless by some lark the insurance will cover it, or the pharmacist can omit one or two ingredients that will make it affordable (I can give one or two supplements the old fashioned, hiding in the juice way, just not 12).  If neither of these tactics is effective, then I am just going to have to think harder about how to hide all of these powders in food and drink.  Because frankly, I have spent every spare penny on supplements, and special diets for over two years now with very little progress.  I am not giving up on supplementing or on progress in general, but I have decided to slow my efforts to a more livable pace.  I didn’t stop buying the boys toys or clothing when the autism diagnosis came, and my husband didn’t stop his interests and hobbies, but when I look in the mirror I realize that in many ways, everything stopped for me.  To a certain extent, that’s ok, but I can’t sustain it forever.  So now I have my china cabinet.  And even though I ended up paying “nothing” for it after all that I sold this week, it was still a gift that I gave to myself.  Not only something that I earned, but something that I deserve.   

Life has to continue.  I can’t stop living, or ignore my wants and needs forever because of my children’s special needs.  I don’t have to choose, I can take care of them, John, and myself. 

Worth every penny! 


  1. They are beautiful and you sooooo deserve it!

  2. It looks great in you room, I must say!