Not You

Ethan came downstairs one morning last week mumbling a phrase he uses daily. “Not you.”

“Yes, I know” I say and I continue to help him get coffee and begin packing his lunch.

“Mom!” he insists, “Not you”.

“I know, bud, but I’m who you get”, I reply, as if I’ve been assigned to him as some kind of concierge. Oh wait….

He says “No thank you”.

I am not Ethan’s preferred parent. I am not even sure I rank in his Top 10 Favorite People.

His preference was strong since birth. When he was born and we were hoping he would be released home from the NICU, his nurse told me to send Dennis to the next few feedings, as he ate better for him. The first time he went in an ambulance as a toddler, he clung to his father and I was relegrate to following the ambulance in our car. Through multitudes of preschool-age illnesses his, he was perched firmly on Dennis’ lap, nestled into the crook of his left arm watching the NJ Devils play hockey.

It has morphed from preference to pathology and he often ruminates on what he DOES NOT want me to do. He almost never wants me to drive him anywhere or pick him up, even though I am often the available adult. He does not want my help with clothing and often complains about me making his lunch – I tell him he is free to do so himself. God help us all if I am the only person home when he needs his nail clipped or assistance with any personal hygiene. At bedtime, he wants Dennis to fix his sheets and say goodnight.

He will ocassionally call a long list of people to pick him up somewhere, some of who will check in with me to be sure he has a ride – my sister, my mom, my friends Sarah, Mariya & Leon. I assure them I am able to drive him – he just doesn’t want me too – like always. When I show up somewhere and he was hoping for someone else, he is capable of a toddler-like tantrum.

I have friends who insist that this must be very hurtful to me. I assure you, I am completely at peace with it. First of all, no one would bat an eye if he was a hardcore ‘Mama’s Boy’ and this was reversed. People would accept that some kids (and adult children?!) heavily prefer their mothers to their fathers. Don’t worry, I have other children, one or two are on my side 🙂 He’s just more attached to Dennis.

While I understand he is often rude and cruel about it, this is where you have to ‘get’ Ethan. So many of his behaviors and activities are brain glitches and compel him to act on certain things. Perseveration is a challenge across the board with him and I recogonize that this is just the ‘thing’ he picks on a daily basis to obsess about. I am a big girl – I do way harder things than listen to Ethan say he doesn’t like me.

Rare photo op!

Dennis tells me that if I am sick, sporting a bandage, or gone from home too long, he looks for me, asks if I am alright and wants to know when I will be home.

Ssssshhhhh! We won’t tell him that we know!

Hell No…He Won’t Go! (chant along)

Sometimes, Ethan comes home in the afternoon or evening and he begins to bargain to stay home the following morning. He announces that he will NOT be attending his day program or going out anywhere for the day.

When we hear this, we know that we are in for trouble. No, he won’t ‘forget’. He will continue making statements and asking for an affirmative answer to his pleas to stay home well into the next morning.

Dennis and I attempt to disengage and ignore the behavior, but he continues with pointed questions that end in needing to address it somehow. We usually continue to encourage him to move through doing the next thing for the evening – but he knows we have not answered the question.

To put this into perspective, what he wants to “stay home” from is a program that he loves, friends he is connected to, staff that does anything and everything to make his day interesting, engaging and productive. It is clearly a ‘brain glitch’ that makes managing many days VERY difficult.

I may have other engagements, appointments or tasks that would not be possible with Ethan home, and they all hang in the balance of whether he is going to follow through with his threat. Ethan cannot be left home alone. It presents a serious challenge.

To make it more interesting…he may change his mind. But that will happen once I’ve rearranged my day or I’ve acquiesced and begun phone calls and other tasks for the day. I know he’s changed his mind when I hear him yell from upstairs, “Ok! Yes.”

Sometimes, I don’t know what’s worse.

Before you suggest cool ideas, distraction techniques, reward programs, medication, prayer, or any number of very good and time tested techniques, I promise you, they don’t work on this guy. He is impervious to all your powers. This behavior is called perseveration and it’s a bitch.

Today, he was dressed, at the door and waiting for his ride. Three minutes later he was on the couch, socks & shoes off, lunch unpacked, coat in a heap and telling his favorite ride to program that he was staying home! It is shocking and so unpredictable. Luckily, today, his brain ran through whatever cycle this is in under 10 minutes. Socks on, shoes on, lunch repacked and out the door.

Bye for now E. We’ll do this again real soon.

Help is on The Way

Yesterday, I had the opportunity to take Ethan to “New Jersey Transition to Adulthood Comprehensive Care” or NJTACC. Their websites states that they are:

an interdisciplinary team designed to assist teens and young adults with intellectual and developmental disabilities as they face the challenges associated with their transition to adult services and medical care.

Specialty Care Plainsboro Front View

It was music to my ears, but my cynical side kicked right in, telling me to reserve any hope I might have for after the appointment.

I am very pleased to inform you that I am hopeful!

Continue reading Help is on The Way

Adult Medical Care

I knew the clock was ticking on the amount of time we could continue to see the pediatrician. I have a complicated child and and my relationship with the pediatrician was close and we’ve had an excellent rapport. Because of our long history together, we could make decisions based on past experiences and trust was high. The thought of moving on was terrifying.

Continue reading Adult Medical Care

I’m In Trouble

I know I am going to  be in trouble. You just don’t mess with Ethan’s things.

But since he was at camp, I figured the time was right to clean his room.

My preference would be purge, cull, organize and rearrange. But I have to settle for ‘clean’ unless I want a full-fledged ‘happy man’ meltdown. Cleaning around the level of hoarding Ethan does is tough for a neat freak like myself.

Continue reading I’m In Trouble

Pay It Forward

Recently, I took Ethan and Sean to an event that I thought they would both like. And they did. Mostly. Then Ethan decided that he needed a Philly Pretzel and then Sean followed suit and then I realized that yet again, I was ‘under-cashed’ for such an event. Dennis gives me grief for not carrying what he deems ‘appropriate amounts of cash’ – which is NOT the $3-6 I often have.

I was attempting to convince both of them that they didn’t need pretzels, but they were admantly arguing the point when a man behind me tapped me on the shoulder and attempted to hand me a five dollar bill.

Continue reading Pay It Forward

A Snappy Dresser

When Ethan was a newborn, I recall being in the mall with him in a stroller. I passed a man with Down syndrome in an outfit I deemed questionable. He had on a Sesame Street graphic tee and his pants didn’t match. I vividly remember my thoughts of how I would ensure that Ethan looked pulled together in public and I wondered why ‘whoever was in charge of that guy’ didn’t do a better job of helping him look better in public.

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Someone Like Me

It’s very rare that the internet lets me down. So, when I searched for family blogs about adults with DS and came up very short, it reminded me of my desire to document the experience of life-sharing with my guy. I did find Nick Special Needs and have been reading through Teresa’s site. So. Much. In. Common.

And then I realized that was exactly what I was looking for. Someone in my boat. A shared experience. A mirror. I also realized, if I don’t write, maybe I am letting someone down too.

So, I’m back. I am here.

Continue reading Someone Like Me