E-I-E-I-O

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I hate the song “Old McDonald Had A Farm.”  Sorry to disappoint any true fans of that little ditty, but just the thought of that song makes my shoulder muscles tense and my jaw clench.  To me, it is that little thing that represents what was and what is not.

Why?

Because my son was an ace at filling in the words to this song when he was about fourteen months old.  We used to sing it; he would choose which animal and make the animal sounds and around we would go alternating our parts, verse after verse.

And then at about seventeen months, he started to always choose “duck.”  I thought that was just his fave, and didn’t pay much mind to it.

But then he stopped putting the words in the right places.

By the time he was twenty months old (and I was awake enough again after having his little sister), I started to really become confused because he would whine and kick his legs if I started to sing this song.  He used to like and be able to do this.

That’s what we call a regression, folks, and there are a few little things that have become very clear as I analyze my little guy’s development.  Regressions happened a few times along the way– most obviously in his language when he lost his first words (though he has regained them + 400 at least), but also in his motor skills… specifically motor planning.  It has taken seven months since I was sure he was no longer able to do the Itsy Bitsy Spider to get him attempting to do it again.  He is not as good as he was at it, but he is doing it on his terms.  This is huge.

But it is also scary.  Because along with his great, great strengths– his warm social smile, his giggly nature, his imaginary play, his now age appropriate language abilities, his increasing eye contact…– come these symptoms of regression.  What does this mean?  We don’t know.  What we do know is that we had bloodwork done for genetics and an MRI scheduled for next month.  We could get some answers as to what is going on scientifically here or not.  If we get no answers, we might be at the end, for now, of our medical investigation.  If we get some answers, I guess, let them be good answers.

I am coming to terms with the fact that perhaps no known cause for our son’s unusual development trajectory might be better than a known cause.  There are certainly a few causes I know we don’t want to hear are part of the picture.

So we wait for results, we wait (and dread) for tests, we play, we live, we move forward…

I want to add here that just because I hate “Old McDonald” does not mean that I have any disdain for my son or who he is.  I don’t want to change who my son is.  I love my little boy for all his quirks and for his truly beautiful way of experiencing, seeing, and communicating.  I have never doubted that he is my angel on earth.

It does make me wonder, though, if there is more to him than we know right now because of some sort of medical condition.  Simply eliminating cow’s milk from his diet and ascertaining protein in his breakfast has helped his body wake up immensely (if diet changes things, what else would?).  It’s difficult weighing who your son is when it changes from day to day based on sensory issues… so obviously, I simply want what is best for my son so that he can be the most comfortable and happy as he can be, as successful as he can be (and I mean success in an altruistic sense– not in an achievement sense).  I want the world for my son.

And that is why I hate “Old McDonald Had a Farm.”  Because it represents, to me, all that is in his way that we cannot understand and make better right now.  And it may never get better– I’m one of those Moms who has a hard time saying my son “has” autism because to me, that word describes a set of his traits, but it doesn’t encompass him at all.  At the same time, I have a hard time thinking “autism” is something that has no cause and is not curable in some form or another… because I have seen my son doing better.  Does that make sense?  I’m not sure, but I hope so.

I want to impart that my love for him has never been challenged by his challenges; a mother’s love only grows by the day.  Because of that love, I hate this song.  I hate that my son has lost something he could do and has had to learn to handle frustration at such a young, tender age.  How hard it must be for him to hear me or his therapists, even in our gentle “follow his lead” sort of way, encourage him to do things his body is just not adjusted to do at that moment.  I hate seeing him frustrated.  I don’t hate when his hands flap or his head rocks.  I just want to find him comfort so that his body can rest in a world that often, what I believe, physically hurts him.

I think this makes me some weird combo of a Mom who half thinks that autism is part of the beauty of neurodiversity and half part of a medical anomaly… er-problem.  These thoughts and feelings are something I have been digesting for awhile… and I think my understanding and feelings are helpful rather than harmful.  For whatever reason, I felt like this was something worth sharing.  I am sorry if you find it offensive or if you find me to be lackadaisical.  But this is where I am as a Mom right now, and I hope it brings some context to this blog’s posts and our journey.

Thanks for reading.

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About rhapsodyinautism

I'm a Mom of two little ones-- a two-year-old son newly diagnosed with autism spectrum disorder and a baby girl who is too young to make any guesses. I work a little bit from home for an environmental nonprofit, and I am a freelance journalist. I love cooking, singing, and autumn weather. And I'm married to a brilliant, involved Daddy. My son is an auburn-haired smartypants who loves trucks and jazz. He taught himself the alphabet at 20 months. He has a beautiful social smile, but he finds eye contact aversive. He is the reason I am writing this blog... because there is a huge lack in legislation, funding, insurance coverage, and understanding in regards to autism spectrum disorders. This will be my place to advocate, tell the tale of our journey, and hopefully share a few tears and laughs along the way. This is our family life, and we have embraced it.

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