Saturday, October 20, 2012

Story Time Saturday: A Little Longer and a Little Different (31 for 21, Day 20)

[This post was originally written as a guest spot for my friend Danielle's blog Life with Penis People.  It was published there in February of this year.  I've included it here for three reasons:  one, I thought it was a pretty good story.  Two, well, it sums us all up pretty well.  We aren't perfect and will never claim to be.  We are, however, real, honest, flesh and blood people who live an ordinary life with three extraordinary children.  Three, I thought it was a good contrast to Sunday's post and shows an evolution of sorts.  -- J.]  

You could say that I know a thing or two about penis people. After all, I live with three of them.

As far as families go, we're a little unusual in spots. We have twins and are knee deep in the wonderful insanity that event creates. We have an older boy who, when not raining art supplies and stickers everywhere, is busy professing his love to his 'girlfriend' (who, like him, is five). Our household is now run by a SAHD (Stay at Home Dad, for those of you not up on the acronyms) which is proving to be both challenging and rewarding on all fronts. Finally, we are a family with special needs, as one of our twins came with a little extra.

I pity our next census taker.

It's my youngest penis person that I write about the most. He's technically the middle child, but with the various delays that Down syndrome can bring, we find ourselves often referring to him as our youngest (as he is now the littlest). Being a “special needs mom” is a double edged sword. With both the great joy and pain that each day brings, you are constantly torn between readying yourself en garde or choosing instead to just fall on it.

For the most part however, our household is just like any other. We're not saints. Despite the little person with a developmental delay, we are really average. Truth be told, we're more like the Osbournes than the Osmonds. I like a good drink, I eat too much and I swear like a pirate hooker (which is how I met Danielle, incidentally, through Moms Who Drink and Swear). While I write this (with headphones, kicking it to the Kinks) the floor is shaking with the thunder that only little boy feet can bring. We have the requisite amount of giggling, bad smells and fart noises. I'm fairly certain that since there have been no tears shed so far this morning that the afternoon is going to be a doozy. I'm also certain that some of those tears might actually come from the kids.

Amongst all the stinky socks and wiener jokes there is my (actual) youngest. One of the more confusing aspects to my family is that one of my twins is a girl. (gasp!). With Wyatt's Down syndrome, most people can accept that genes are quirky little buggers, but a lot of people have a problem sorting out that I got the combo pack instead of just bulk. To alleviate some of the head scratching: with fraternal twins you get two BABIES, you don't get to pick what combination. It's especially noticeable as my son is fair and has blue eyes like the rest of the PP (penis people) in the house, but my daughter has olive skin and dark eyes like her mother. She is, in fact, mini me... complete with a dislike for spinach and a shriek that can shatter your skull. Unlike the PP, she and I will one day walk hand in hand out into the sunshine while the males of the house (who range from all out Ginger to Daywalker Ginger) slather themselves with an SPF that is just shy of an asbestos suit.

Where was I? Right. Parenting... specifically the penis people. More specifically the little one.

The “special needs” part of the resume really isn't all that scary. Mind you, we're still pretty new at this as the babies just celebrated their first birthday the other day. I'm not going to say that it isn't work, because it is. Being a parent of any child is work. Wyatt however, poses a few challenges that we did not run into with his siblings. The hypotonia (weaker or looser muscles). His heart issues. Our biggest hurdle, really, is public perception of Down syndrome. Even I, as a nurse, thought I knew what Down syndrome was. I knew it as a collection of symptoms, a grouping of disorders. I thought that it meant serious cognitive delays. I thought it meant that my little guy would not amount to anything. I was waaay off, and I have more education than most.

What I have found it to mean is “a little longer” and “a little different”. As in, it will take Wyatt “a little longer” to learn to do most things and he will do things “a little different” than most kids. He will take a little longer to learn how to do things like walk and talk. He will do things a little differently as he learns by sight and not sound and because of that he will probably be able to read by the time he is 2. I don't know exactly how he is going to do in school any more than I know how his two siblings are going to fare.  I do know that many people with Down syndrome can and will go off to college, finish and get a job, just like everyone else. I also know that the time I spend with my son working on this or that little thing will make all the difference in the world when he is older.  My time in him now is an investment in the future.  Just like any other kid.

I run into a lot of stupid human tricks with the twins;  I am happy to say that people, in general, seem to be a little more respectful towards those with learning disabilities (at least to my face) than I remember in years gone past.  The concept of institutionalizing those that are 'different' is thankfully dying off.  Inclusion in society and inclusion in the classroom has make distinct inroads into prejudice and ignorance.  That's not to say that we don't have light years to go, which we do.  Use "Down syndrome" as a keyword search on Twitter and see how often it and The R Word are used as a punchline.  As a mom and a psych nurse, I have pretty thick skin and I wear my big girl panties daily.  As a mom of a baby boy with Down syndrome, I throw on my ass-kicking boots and magic helmet for good measure.  Wielding that aforementioned double edged sword isn't easy.  Neither is educating those who are unaware of their own ignorance.  But, we "special needs moms" do it.  Every day, even before coffee.

We still have bills to pay and toilets to clean just like every other family.  It is what it is.  We're just trying to do the best with what we've been given.  I still expect my kids to live up to their potential and to follow their dreams.  I encourage them to explore their world and facilitate any learning that may arise from that. Team Logan has the same dreams and desires as your family. We just take a little longer to get there and do things a little differently.

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