Category Archives: down syndrome

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 them  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.

When Ethan Surprises

One of Ethan’s super powers is his Super-Unpredictability. You really NEVER know what your going to get. Such was the case when he was called in to participate in his own IEP Meeting. (An IEP is the legal document that drives special education services and a meeting is held at least once a year to review it.)

I watched as he entered the room calmly and closed the door so carefully behind him. What?! He smiled and greeted me with a sweet ‘Hi, mom’ and a kiss on the cheek. He generally avoids me at all costs at home, except if he wants something from me. Each and everyday, when he returns from school, I am greeted by him as I would be if I came across a full-sized and angry grizzly bear. He is rarely genuinely happy to see me. Truth.

He smiled and chatted with the woman who represented the school district. He answered questions so appropriately. He was asked what he might like to do for paid work when he leaves Midland (which I assured the school district’s case manager was not, in fact, going to happen next year). He told them he likes the Midland workshop and piece work. He asked me to tell them about our trip to Florida. He asked me to tell them about his brothers and his Halloween costume.

He reached over and rubbed my arm and patted my hand. He giggled at some things. A couple of times when he did not hear or understand the question, he cocked his head, made an adorable face and said ‘what?!’ like some witty cartoon character. He was so ‘on’. He smiled and nodded signed his name on the correct lines.

He charmed the whole room…

…and his own mother.

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Field Trip Hero

About 60 times over two days, Ethan asked to visit Northlandzagain.  I obliged by packing up all The Boyz and heading there. We were greeted by the creator and builder, Mr. Zaccagnino, and it’s always nice to see him. We paid our admission and were well  immersed in miniature train world – like a magical alternate universe – when Ethan started giving me a hard time about eating lunch. I figured we’d do much better if we took a little break and had a couple of slices of pizza before resuming our travels – and there is a sweet, little snack bar. But it didn’t work that way.

Ethan proclaimed he was done. When Ethan says he’s done, it is a lot like the universe saying ‘….and so it is written’. There are very few times when he can be redirected. Nearly never. I asked if they had happened to have a wheelchair on the premises, and Mr. Zaccignino quickly retrieved one for me. Occasionally, Ethan is genuinely fatigued from walking.

I cheerfully offered him a ride.

No.

I cajoled, encouraged and bribed.

No.

I Facetimed Dennis.

Nope.

His tantrum was epic. Loud, physical and drama-filled. I feel very bad for him when he is in this state – I believe that he is ‘stuck’ and that it is completely beyond his control. I know brain chemicals are involved and this is a direct result of the nature of his disabilities. It was hard on him and the rest of us.

I am past being embarrassed. My dilemma was that I had 3 other boys who were genuinely enjoying the tour and I was sure to be faced with resistance from them as well and a tantrum from my semi-feral 5 year-old. Ah, between a rock and a hard place. I was trapped.

I have been in MANY difficult situations with Ethan and on VERY FEW occasions has anyone offered to help me. If someone had asked me in that moment what they could do to help, I would not have known how to answer anyway. Just then, I felt a hand on my hand. It was Mr. Zaccagnino. He gently patted my hand in the way that only men of his generation can. He didn’t ask me what he could do. He presented his plan.

“Here are two passes so that you can bring him back”, he said, handing me courtesy tickets. He also let me know that he would escort Gavin, Mikey & Sean back to the 50% mark, exactly where we left off, so that they could walk through the rest of the tour. He assured me that Gavin was old enough to escort his brothers through. Ethan sat in the car and cried for some time. It is always sad for me to see him in this state. For a moment, I thought that I might cry too, but decided against it.

The boys finished their tour and happily exited.

Mr. Zaccagnino is not only and interesting and talented artist who has chosen to share his exquisite hobby with the world, but a compassionate and wise man who bailed us out of a precarious situation this week.

Crisis managed. Disaster averted. Thank you to our field trip hero.

Now go visit Northlandz – just don’t invite us to come along 😉

Ethan’s Birthday Post

My most popular blog posts are always about Ethan.

DSC00705 (1)Maybe it’s because his gigantic personality is crammed into his 4’11 & 3/4″ frame. Maybe it’s because Ethan goes big or goes home – in all the best and worst possible ways. Maybe it is because his brain works so unbelievably different than the rest of us and he gives us a tiny view into a different dimension – sometimes I think it could really be that.

DSC00739He is our resident ‘psuedo-hoarder’ (only because I won’t let him go any further) and the most frustrating DJ (he usually only plays 2/3 of a song) there is.

Ethan turns 19 today.

He is remarkable and I am honored to be his mother. I am glad that his story is being written right here next to me. I wouldn’t have it any other way.