Yo soy La Lay

adventures in family, faith, and Down syndrome

My political rant continued.

“Don’t worry,” they tell me. “Tessa has Down syndrome, which is an automatic qualifier. Her services aren’t affected by these changes.”

That is a dangerous line of thought. And it’s SO not the point.

As I shared earlier – this is not just about her. She is one face in the world of disability, but she is not the only face. It’s about taking care of families, taking care of children.

The reality is that there are many, many children who do not have “automatically qualifying diagnoses.” The laundry list of delays that I laid out earlier could be any child, anywhere, with or without Down syndrome. And a choice to leave them to fend for themselves is cruel. It’s inappropriate. It has long term consequences that we cannot even begin to understand.

Once we begin to remove supports for individuals with disabilities, we limit their potential. Once we have told them that they aren’t worth our resources and efforts, we take a step backward in our development as a society. We devalue an entire population.

I won’t stand for it. And I won’t change my message. This has to be stopped.

1 Comment »

A political rant – and I’m not apologizing.

I now live in a state where the governor believes that providing Early Intervention services for infants and toddlers who are less than 50% delayed is “financial recklessness.”

Early Intervention has been my lifeline, my saving grace, my hope that if we can get her started on the right path, she can accomplish her dreams. And though the path will be challenging, there has been support and structure and light for our journey.

However, my child is not more than 50% delayed.

In the proposed budget, presented today by our newly elected governor, my child would lose her therapy services.

My child, who has just mastered crawling on hands and knees while her peers are starting to walk.

My child, who has just barely begun to sip from a straw while her peers are long off the bottle.

My child, who is miles from any words, while her peers have begun saying Mama and Daddy and other first words for weeks.

My child, who ate pudding on her first birthday because she cannot manage solids while her peers fed themselves their own birthday cake.

My child, who has come so far and has worked tirelessly for every. single. milestone.

I literally feel as though I am going to throw up.

Life is not fair. I have never expected it to be. But I’m angry. Livid. Because this isn’t just about me and my family – it is about society and values and about being a human being.

I want out. Out of this state. I want to throw a tantrum and yell and kick and scream. And then I want to strap Tessa in her car seat and drive on over to the governor’s mansion and interrupt his lovely dinner to ask him a few direct questions. When did we decide that it is just fine not to take care of our own?? When did we decide that it is dandy to cut from our most vulnerable of citizens who live in families (like mine) that otherwise cannot afford to provide them with the therapy services that they need?? Why is that okay with ANYBODY??

My direct statement to my family and friends who voted this man into office (because I know you are many) – is that I am begging and pleading for your support in fighting this proposal. It is not what is best for our children. It is not what is best for our state. You elected him into office and he is now dismantling every support that my family relies on – I urge you, please contact your representatives and ask them to fight these changes to Early Intervention. This cannot move forward.

End rant. For now.

4 Comments »

On abandonment

We’ve all seen the latest story that is trending on Facebook… you know the one, the story of the father who is (allegedly) choosing to raise his son, diagnosed with Down syndrome at birth, in spite of the mother’s choice to (allegedly) abandon the child.  You can google the story if you haven’t seen it already.  I honestly can’t decide if any of it is credible enough to merit a link.  What I will say is this:

I will not demonize the mother for the choice that she seems to have made, nor will I canonize the father for taking his son to New Zealand in search of better opportunities.

While the choice to leave my child to be adopted in the face of her diagnosis is clearly not the choice that I would make, understand that I am part of a strong and loving marriage, we aren’t rich, but we are comfortable enough, and we have the support of family and friends.  Sometimes, the most loving thing that a birth parent can do for her child is to recognize that she is not in a place to provide what is needed.  And there are many loving families desperate to welcome a child into their homes.

More importantly, I beg you, do not be naive enough to think that these very scenarios do not play out in hospitals across the United States.  Many doctors (thankfully, not mine) deliver diagnoses like these as if they are devastating, miserable, horrific occasions.  It’s not just Down syndrome – any deviation from the neurotypical path is scary, but it does not have to be a death sentence.  And while the gender of the ‘parent who stayed’ is often reversed, there are relationships that fall apart in the face of all kinds of adversity – including the strain of a child with special needs.

We will commend the father for providing for his son, but have we abandoned our own?  Will we invite the little boy with Down syndrome in our son’s class to his birthday party?  And then truly and genuinely allow ourselves to see him as just another 8-year-old boy?  Will we set up a playdate with the neighbor’s daughter who has autism?  Will we accept a child with a severe learning disability into our classrooms and do everything we can to support his desire to learn?  Do we refuse to abandon the children who live in our own community?  Without patronizing, without any air of superiority or feeling of having done a good deed… if you want to make a difference in this world, this is your chance.

Pray for the families that struggle under the strain of a world that has not yet found a way to embrace their child.

Encourage inclusion, acceptance, kindness, and compassion.

Let your actions serve as example to others.

Choose love.

IMG_7558

3 Comments »

Don’t be a cry baby. (Please?)

Anyone who thinks that people with Down syndrome are eternally happy should come spend some time with us from 6:45-7:15 on any given night.

Good. Lord.

The phrase “scream like a banshee” has taken on a whole new meaning since our sweet little booger has decided that bedtime simply isn’t her thing. With every wail, I can hear her cursing us for leaving her in the dark. The best part is that her timing is unsettlingly perfect – just as you breathe that sigh of relief because finally, she’s calm and reach to take a sip of your wine, BAM. Just kidding! If she had words, I can guarantee she’d be yelling the ones you wouldn’t say in front of Granny.

I can’t say that I blame her for being upset. When you live as thrilling a life as we do, it must be devastating to miss out on the fun. Between the crossword puzzles and episodes of House Hunters that have been on the DVR for about 2 years, I sure wouldn’t want to sleep through any of the awesomeness.

We’re just bustin’ down stereotypes, one bedtime routine at a time.

IMG_7495

9 Comments »

Inside and out

Look, I’m not a fan of the cold.  I’m sure someone could make the case that I’m really missing out by not playing with my kids in the snow, but really, I’m just fine with taking the pictures and making hot chocolate (recipe at the end).

Plus, on the inside, we have just as much fun.

At 6:15, Ellie woke up, looked outside and gasped.  “It’s Christmas!” she exclaimed.

Well no, not quite.  It was still dark outside and she was desperate to head out.  I managed to keep her calm until precisely 7:22 am.  Then I gave up.  When I told John I was sending her out, he look at me with giant puppy-dog eyes… “Can I go out, too??”

I bought this snowsuit a little too big last year and made it work.  This year, it’s a little too small, but still works.  Two years out of one snow suit?  That’s a parenting WIN in this house!

IMG_7565

 Dora umbrella is back!IMG_7571

IMG_7569The first trek out was considerably calmer than the afternoon madness.

A kid in ski goggles… too much.IMG_7583

Blizzard Conditions… no kidding.
IMG_7586

She doesn’t have the attention span to build a fort, so this will do.IMG_7589

And on the inside, I got to enjoy… this:

IMG_7576I win. 🙂

Our favorite hot chocolate recipe

1 cup milk

1 tablespoon sugar

1.5 tablespoons Hershey’s unsweetened cocoa powder

1 handful of semi-sweet chocolate chips

Throw everything into a pot, heat it until the chocolate is melted, serve in a mug with marshmallows.  All these ingredient amounts are total approximations, so good luck. 😉

4 Comments »