Category Archives: down syndrome

Beach Brawl

There are times I say nothing. There are times I decide that I’m going to let it go, rise above and turn the other cheek.

There are times I decide that I am not going to do that.

Ethan was having a particularly hard time on the beach last night. He is apt to do that. He went from ‘happy man’ to ‘I’m going home’ within the hour. Doritos and a coke had no bribery value. I believe he was using the ploy to visit the men’s room as a mode to get closer to the parking lot. He asked that I not come with him. So, I went incognito and followed at a distance. That’s when I saw it unfolding.

There were a group of what looked like 20-somethings following closely behind him. I saw the nudges and pointing before the comments started. I know how this goes. I’ve seen it far too many times.

There was laughing and whispering, pointing and a girl shrieking ‘stop it – you’re so mean!’

‘I want to buy the poor guy a donut’

‘Look at his head’

‘Nice shorts’

Then, ‘Fat r-word’

I waited for Ethan to walk ahead and enter the men’s room. Then it was my turn.

‘I hear you running your mouth you ignorant piece of crap! You must be some tough guy to pick on someone like him! Yeah, you – keep your head down and keep walking.’ Some more followed.

But from him and his pathetic, little group there was only more laughing and shoving of one another and looks of shock. They thought he was alone and they could carry on their recreational mocking in private. How dare I talk back, right?

Bullies count on you to be quiet. I explain it to the boys all the time. They expect you to be hurt and embarrassed. They expect complacency. They count on you to be placid. I tell them to meet those kind of people where they’re at – head up and mouth open.

On our way back from our journey, I noticed the same guy sitting with a large group of people. I expected it was his family. When Ethan was a safe distance toward our group, I approached him.

‘You know, jackass, his life is hard on a good day, on a bad day it is something that a piece of garbage like yourself wouldn’t know what to do with. People like you make my whole family’s life harder. He deals with more shit then you probably ever will and you need to know that ‘what comes around truly does go around’. I hope your family here knows what a scumbag you are.’

He said he didn’t do it. He said he didn’t say anything. He said he was ‘trying to help’. Lying sack of crap.

That’s when his dad got up and used ‘fat’ in front of the B-word. He said I was making a scene. I informed him that if his son wanted to make Ethan a spectacle, that I’d give the same back. Let’s make a scene. I may have referenced his height. I may have made my sailor-father proud with the string of swear words I put together.

And then, I walked away. Tears welled up and I started to break down. But that was ok, because by then I was back with the people who care deeply for me and Ethan and the rest of my family. I am glad they were there and that I was not alone.

I am writing about this scene, because it is rattling around in my head. It brings up my worse fears and greatest disappointments. I become sickly aware that someday Ethan will be a grown up and I will not always be there to defend him. Then I remember, that he has three brothers, being raised by me.

I am still debriefing this situation. I play out alternative endings and rehash my tirade. I am thinking about how I want these things to play out in the future.

I wondered ‘what would Jesus do?’

Jesus did some yelling and table-flipping.

I am not Jesus.

Theresa Giudice did some yelling and table flipping.

Oh well. I am glad I got this off my chest. Thanks for listening.

sunset

This is the sunset the boys and I pulled over to enjoy after we left the beach. Terrible picture, fabulous moments.

20 Years

“Twenty years now
Where’d they go?
Twenty years
I don’t know
I Sit and I wonder sometimes
Where they’ve gone

And sometimes late at night
When I’m bathed in the firelight
The moon comes callin’ a ghostly white
And I recall”

Thank you Bob Seger.
It is Ethan’s birthday. For me, this day marks 20 years of parenting with 100 more to go.
Many years before there were 4 boys comprising this crazy and chaotic clan – there was just three of us. Dennis. Me. Ethan. 5 1/2 years. Just us.
His Story is something I remember with emotions that can bubble to the surface even as I read it today. Living with Ethan is incredibly intense – that’s the truth. He is intensely complicated, intensely persistent, intensely funny
…and intensely loved.
Happy Birthday, Ethan!

Sunday Scenes – The Very Bad Mother Edition

I woke up VERY early for a Sunday. 5:48 to be exact. It worked out nicely, as I was watching my neighbors kids bright and early. It was nice to have breakfast guests.

DSC06584 (1)Although I no longer attend church and don’t see that changing at any point in the near future, there are some things I still find very meditative and comforting.

DSC06587I do not like contemporary christian music, but I do like old, very traditional hymns. It’s is ok with me if they are performed by contemporary christian artists but I still prefer Alison Kraus, Johnny Cash, and Dolly Parton.

DSC06588Then, this happened and I cannot stand it. Just can’t. Can you?

DSC06595Also, I allowed Ethan to leave the house wearing this. Do I think that it’s ok? I don’t. I was late for playoff hockey and fighting with him can take a VERY long time as Ethan can hold out on issues for hours at a time.

Speaking of being late for playoff hockey and fighting with Ethan…here is where ‘the very bad mothering’ happened. When I arrived at the hockey game, other moms greeted me with ‘Hi! Where is Sean?’

Well, he must be here somewhere, he came with Dennis. But no one reported having seen him. After a cursory search and confirmation that Dennis did not, in fact, bring him, I panicked. It took me about 10 full seconds to realize that he had been playing on the swing set in the yard across the street – WHEN I LEFT!! Yep. I finally really forgot a kid. The littlest one to boot.

I mean, sure it was cleared up in one quick phone call and he had all the time been the care of a responsible adult (not me), but it was terribly disconcerting. I am sure the ‘Mother of the Year’ is still taking nominations. Check on that for me, will you?

So hockey season has come to an end. As glad as I am to have it be over…

DSC06611 (1) DSC06607I love to see them like this!

Later, Chef Cutie and I baked some cookies. We used the wrong recipe – but baked none-the-less.

The evening ended on the best note – literally – the Star Wars Film Score. There are so few times that Ethan is happy, truly, really, happy. Content. With the music blaring, he worked on diligently on his light saber skills. Meditative, light-sabering – I think it could catch on.

DSC06634 DSC06635The force is strong with this one.

So, So Sick

Ethan is sick. Poor guy. It sounds so simple, but it’s not. The final diagnosis is pneumonia – just like Gavin and I.

IMG_0481

We have a pull out couch in our kitchen – thank goodness. It has served us well during the last few weeks.

We’ve come to call Ethan ‘the ox’, because he misses so many illnesses that come through our house. It is really shocking given the circumstances that we faced the first seven years of his life.

As an infant and young child, Ethan was often critically ill with breathing troubles brought on by both reflux and a cruddy immune system. Sure, he had the ‘normal’ kid stuff – but he got things twice as bad, they lasted twice as long and he got them five times more often than other kids. He had scarlet fever – several times. I cannot count the amount of times he had Coxsackie, Fifth’s Disease, Roseola or Rotovirus.

Oh God. Rotovirus. May you NEVER.

It is hard to remember. It is hard to go back. They were very lonely days for sure. I marvel that Dennis and I so quickly developed a skill set that allowed us to do it on a near-constant basis. We planned our first ever family vacation when he was almost 7. In NJ. We lasted 4 days…before he got sick.

His current illness reminds me of that time. It also reminds me of how blessed we are that him being this sick has been few and far between in recent years. We are so fortunate that he got stronger and healthier. We know kids who did not.

He has come so far it’s remarkable.

I never forget that Ethan is loud, demanding, funny, obsessive, opinionated, silly, and requires ‘line-of-sight’ supervision.

I do often forget that he is really remarkable. Truly.

“There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.”
— Albert Einstein

Be A Ghost

When Ethan is in a particular mood, on most afternoons after school, he perseverates on a certain topic.

‘You die mom?’

‘Mom, your dead. Be a ghost.’

‘Mom? Gonna die, mom?’

‘Mom? Mom. I love grandma. I love dad. I love Gabby-boy. Not you – I ‘X’ you.’

Then he makes the sound you would hear if you gave an incorrect answer on a game show.

Peals of laughter commence – only from Ethan, of course.

He goes on and on about me becoming a ghost and haunting our present house. He maintains that it will then become a ‘Spooky House’. He tells me that I am ‘old’ and ‘yucky’. He rarely expresses this about Dennis – and he is old and yucky too!

Sometimes I ignore him – to the extent that it is possible to ignore Ethan. If he chooses, he can keep this up for hours. Sometimes I respond.

‘Yes, E, we are all going to die.’

‘Yes, E, if given the opportunity I will definitely haunt you.’

‘Ethan, if I die, who is going to make the food and do the laundry?’

He says he’s going to take over. Maybe he could start that now?

He has expressed these sentiments from the time he was very young. We can come up with no good reason for this particular behavior – or so many like it. It is inexplicable – like so much about him.

It is a hobby, a habit, a compulsion. My mom is often concerned that it upsets me. It does not. I recently had a compassionate friend concerned that it is hurtful. I am not sure why it does not bother me. I don’t believe that he secretly hates me and also, a lot of what Ethan does is confounding. It is far from the most difficult facet of his quirky self.

It’s fine. I love Ethan enough for the both of us. And if it turns out that it is, in fact, possible to haunt him or become a ghost when I die – I’m in.

DSC04462 (1)
“It’s how you ride the trail that counts.”

~ Dale Evans (Rogers)

Did you know that Roy Rogers and Dale Evans had a baby girl with Down Syndrome? This book is a little beauty.

To The Mom Who Left Her Newborn with Down Syndrome

Dear Ruzan,

I’ve read the stories about you and I wonder what it is like to be a headline. I’ve read the comments after the stories and they are very harsh.

I know nothing about you. Neither do the people who are writing the stories or making the comments. I don’t know what the state of your marriage was before your baby was born, your personal struggles, your finances, religious beliefs or your mental health. I know the state I was in after I gave birth, and I would not want anyone judging me on that period of my life. Ever. I do hope, for your own sake, that you have people that care deeply for you around you right now.

I find many facets of your story incredibly intriguing. One is that everyday in the media we hear horrible stories of mothers who have beaten and neglected their children, drowned them, thrown them from bridges or set them on fire. As gross as this is, it is true and many people make the flippant comment – ‘if she only left the baby somewhere safe’.

You’ve done that. Congratulations. I mean that. You left your child in the loving and capable arms of his father who seems to be confident in his ability to love and raise Leo and I pray they will receive all the support they need in their endeavor.

Let me tell you something about myself. I gave birth to my first child who was diagnosed with Down syndrome shortly after birth. It is probably one of the most challenging and devastating periods of time for a mother of a child with a profound disability. It can be hard. Really hard.

I knew from the moment I received the diagnosis, that I would fight harder, love him more, become a better version of myself and put him ahead of anything else on the planet. He is one of the great joys of my life.

I also know the struggles I deal with on a daily basis. They are deep and sometimes dark. My son is hard and has many medical and behavioral complications that I never anticipated. I have looked back a certain periods of our family life and wondered how on earth we came out on the other side. I believe any mother of a child with significant special needs will tell you – the highs are gloriously high and the lows are sometimes so low they are scary. This is my life.

Coincidentally, I am also raising a child whose biological mother was incapable of raising him. She told me herself. I can’t imagine admitting that and yet I can tell you that surrendering him and walking away was the best decision she ever made. I look at him and believe in destiny. He belongs with me and his father and his brothers. I wish good things for her and say a prayer ever time I think of her because she gave me one of the greatest gifts I will ever receive.

I even hope for him (and her) that someday it might be possible for themĀ  to forge some type of healthy and productive relationship. I hope that he can accept her for who she is and all she could and could not do. She is no villain. What if she is, in fact, a hero?

I don’t think you are a horrible person, or even a terrible mother. The grief you must be dealing with is probably immense. You have lost the child you thought you were having and you were unable to embrace your new reality. You have determined that you are not able to raise your little boy. You have received lots of negative publicity and many people are very quick to rake you over the proverbial coals – although most of them have never and will never face your situation.

If you are unsure of your decision and need help – please, reach out and get it from whomever you think can help. Now you know where I am.

If you are certain, I wish that all of you the joy and love that is meant for you in this crazy life.

I wish the same for your gorgeous, baby boy.

Ethan, The (Non)Foodie

069He watches every episode of Diners, Drive-Ins and Dives. He comments and is intrigued by every ingredient.

“Bacon and eggs?!”
“Yeah, soup!”
“Big, big, big sandwich!”

He watches intently as someone renders duck fat, creates a roux, smokes the perfect brisket and mashes potatoes. He likes to eat and watch. He loves Guy Fieri. He wants him to come over for dinner.

But, Ethan would NEVER eat anything they cook on that show.

He has an EXTREMELY limited diet. 4 foods are in constant rotation. Like 1-2-3-4.

Quessadillas
Pizza
Popcorn Chicken
Bacon

For honesty’s sake, there is a very rare occasion when he eats something ‘new’. It is very rare and has never added that food to his rotation. Sometimes he eats 3/4 of something and then insists that it was ‘yucky’. Sometimes he requests something and once it is cooked or ordered – decides it is ‘yucky’. Frustrating does not do justice to this behavior. There are chips and salsa, and he will eat other things battered and fried – as long as it looks like popcorn chicken. 2 times a year, he eats a bowl of Cheerios.

Between the ages of 18 months and 3 years, the term ‘pediatric anorexia’ was used to describe him. Getting him to ingest anything was a daily struggle and a full-time job. It continued for many years. We have sought the help of many speech and feeding specialists – at one time he was in ‘feeding therapy’ 3 times a week for several years. We have worked with behaviorists and nutritionists. We have tried all manner of approaches. He is one tough nut to crack. Many kids on the autistic spectrum have ‘food issues’.

There is a lot involved in his eating disorder. Sometimes it makes life hard – and sometimes it makes it easy. Either way, we are stuck with it. And while Guy is profiling someone who makes the best blackened catfish with mango salsa, Ethan will be eating two slices of pizza – one plain, one pepperoni. Always.