Monthly Archives: January 2012

When autism seems like a little thing.

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I’ve been a little out of writing for the past week or more because we received a phone call from our daughter’s pediatrician letting us know they incidentally discovered she had an enlarged heart on an x-ray.  Fast forward through a few days of nail biting, extreme stress, and a quite a few fearful tears, we got our baby girl to a local children’s hospital to discover that whatever was on her x-ray was no longer there.  No, the original x-ray was not a “bad” one– three doctors concurred on this– the problems on it simply were not there when she had further testing.

What I learned:

1. Miracles happen.  However one might want to interpret the above story, it is a miracle that our baby is well.

2. Autism is serious.  Autism is an everyday challenge.  Autism is an uncertain and definitive part of our lives, but it is still about life.  The focus on our son’s therapy is on improving his life, one little bit by bit, so that longterm he will be independent, happy, successful.  There is no goal to simply keep him alive.  He has to have an MRI due to some of his regressions, and I though deep down I know there is a very tiny itsy bitsy chance there could be something scary on this MRI, I suspect there will simply be some developmental anomalies that explain some of why my son is who he is.  Or not.  We’ll see.

 

These are things for which I am grateful.  Life was put into perspective in our household this month.  Live life to its fullest, people.

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.

Joy, in bits and pieces.

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Last week I took my son to his neurology appointment, and for the first time in a long while, he and I had some time to ourselves.  Now, you might think that spending time together by getting an EEG would be pretty miserable for a two-year-old and his Mommy, but my son and I like to make things rock.  So we did.  Reading a little book about buses and watching “Sid the Science Kid,” my toddler enjoyed his EEG with such great behavior that the tech rummaged her entire office searching for not one, but two special (Thomas & Cars) stickers.

What was the best moment of the day for me?  When we dropped off labwork, my son exclaimed, “Thank you!” completely unprompted to the tech as she took our things from us.  Ummm… wait, I thought you had a communication disorder?

And that sort of sums up where I am right now with my son.  He’s awesome and so full of joy.

I seem to get the impression from people that they expect children with autism to be so flat and disconnected from the world, and that is just not the case with our son.  Even his neurologists were quite stunned by him because he DOES meet the criteria for autism, he DOES have something working very differently in his little brain, but he’s just so…. connected.

 

Lately, what has been especially impressive is our ability to prepare him for new and difficult sensory experiences.  After reading about and looking at photos of the Franklin Institute, my son was able to genuinely enjoy himself at a crowded museum in a crowded city.  Overrun with pushy, loud kids, my little dude got right into the hands-on action kicking soccer balls, exploring pulley systems and even investigating a huge train.  In just two days spent with my younger cousins, he was able to connect to them in his own way, and established individualized relationships.  This is just so remarkable for a little boy who has such difficulty making sense of the world around him… such difficulty processing his own movements… such difficulty communicating his wants and needs.  And yet, such joy.

Such true happiness was experienced by him this weekend as he clambered up into a net of rope with his aunt and cousin that he even attempted the “Itsy Bitsy Spider,” a long lost skill which he often tantrums at the mere mention of  ‘spider’ (wouldn’t you tantrum if you used to be able to do something and now your brain/body somehow can’t get it done?), with a smile.

So today I revel in the joy, the joy of my son, for his joy is mine, and it is ours, completely.  I know things could get more complicated for us sooner than later (he has to have an MRI & our daughter starts her study this week), and even though I know all this ‘work’ is worth it, I refuse to let our family forget what is most important to us: the joy of this life.

Rhapsody in Autism.

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It’s about time to post about this blog’s namesake– Gershwin’s Rhapsody in Blue.

Anyone who knows our family personally knows that our children had a genetic predisposition for all things music; with parents like us, it is sort of unavoidable to, at least, like it.  As it seems, both of our little ones have natural propensities for music, which can make for a lot of fun in our home.  Our daughter is delighted to sit on my husband’s lap while he plays piano– she sort of grabs onto one of his arms and bobs along and listens.  And my son’s best eye contact comes when I sing to him– it’s also a great way to pull words out of him, too, because he knows the words to almost every song I have ever sung to him.

Funny enough, both of them look at me most and smile at me the brightest when I sing — at any given moment– Meredith Wilson’s “‘Til there was you.”  This just happens to be the song I liked to sing to them both in utero (for whatever reason) so maybe they really did hear all that singing and liked it.  I can tell myself that anyway, right?

Our son specifically loves jazz and anything that a child his age would generally not have a preference for… his longtime favorite now is “Rhapsody in Blue.”  And I think it’s twofold for him at this point, because he not only loves it if we play it on CD, on spotify, in the car, whatever, but he also loves to watch the Fantasia 2000 clip of it on youtube.  And lucky for us, this calms him, for instance, when he’s in a crowded, germy ER.  Also lucky for us, we love “Rhapsody in Blue.”

So that’s why this blog is titled “Rhapsody in Autism.”  It’s a play on words that works fairly literally.  It has been great to see that readership is growing on here, so thanks for being here.  We’re happy to share our story.

In light of stress.

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Oh what to say.  Well, erm, hrm….

So Tuesday we had an IFSP meeting with out Early Intervention Service Coordinators and 2/3 of my son’s therapists.  It was an extremely stressful meeting, and I became increasingly emotionally-charged until we got at least some of our service change requests in light of our son’s diagnosis and current needs.  There really is a lot to say about early intervention in New Jersey, some great, but a lot not so great when it comes to their handling of autism spectrum disorders.  It was a ridiculously long meeting, but at least we were able to increase our son’s authorized services from its current 2-3 hrs of service per week to most likely 7 hrs with a physical therapy evaluation.  I’m still feeling agitated when I think about certain situations, and I will be addressing these things sometime, but for now, just know Monday evening turned me into one of “those special needs tiger mommies.”

So Wednesday. Right.  My little man had a complex partial seizure laying on our couch after a very unusual nap.  I know it shouldn’t be a big deal because he didn’t get hurt, and it wasn’t a grand mal seizure… but it sort of confirmed that my son has been having seizures– something I have thought he was having, but was hoping I was somehow wrong (he had one normal 30 minute EEG a few months ago).  It’s more just scary thinking about what could happen, though I know that’s pointless to some degree… but come on, he’s my baby.  Can he just get a break?

 

And in light of all this stress, I will leave you with a piece titled The Special Mother.  Do I agree with every little word choice and phrase in it?  No way.  But does it speak to me?  Yes.  It makes me cry every time I read it.  Because regardless of the hows and whatevers about it… I am coming to terms with my role/life/place as a Special Mother.

 

Easy Screening.

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A lot of people ask me, “How did you know?” in response to my saying I knew–in a nonofficial and not as serious sense– my son had autism before we ever saw a doctor.

There’s a lot as to why and how really, though my Mommy Intuition has a lot to do with it… Moms just know when something is going on with their babies sometimes.

But there are tools to help.  Professionals are supposed to use the M-CHAT at well check-up appointments between 12-24 months.  If your doctor has not done the M-CHAT with you, you can see/score it here.  The M-CHAT is a set of development questions, but not all of the questions are equal– certain questions more clearly distinguish that your child can be at risk for autism.  Pay attention to the scoring if you do it yourself.

Another screening tool that a lot of Moms use is from childbrain.com titled “PDD Assess” linked to here.  This one is a bit more involved, but it was a great indicator for my understanding of our son before he went to his evaluation– his score on this test is generally around 110, indicating just Moderate PDD, which is just about right (though our son is mild in a lot of ways). If you take this test about your child, make sure you read the directions on how to score it.  It can get confusing if you do not use the directions, and what you think is severe may not be… or vise versa actually.

If you take one of these screening tests, be honest with yourself and about your child, but do not freak at the results.  These are tests that can indicate your child is at risk or has a likelihood of diagnosis for autism or another of the pervasive development disorders, but they are not psychologists, developmental pediatricians or neurologists… those are the professionals who diagnose, treat and work with these disorders on a regular basis.  Find a professional you trust and get your child into their care.