RAISING A HANDICAPPED CHILD

Or, Put Up Your Dukes!

Raising children is a tough business. You not only have to protect and teach them, you must feed and keep them clean and entertained. Raising a handicapped child is adding a whole set of problems.

When Ellen was a little baby, about 2 or 3 years of age, I would hold her in my arms as we went through a store. We decided to leave this big department store, with Ellen on my shoulder, facing behind me. When I got outside to the parking lot, Ellen was holding a doll, brand new, and off the shelf. NOT PAID FOR!

My daughter Ellen is a fun kind of person! That in spite of her problems is who she is! She likes to be amused, entertained and God helps you if you don't!

Once before I renovated my present home, I had a Hallway, kitchen and dining room that all met at one point. You could literally run into the dining room that led to the kitchen that led to the hall that took you back to the dining room. It was the spot where Ellen and I played and had the most fun. She would chase me around the area, and as I got out of sight, I would be on her heels; she would see me and I would chase her. This would go on forever. Ellen would be laughing the whole time. I would be making exaggerated noises to her amusement. When I was on the precipice of a heart attack, I would let her catch me. Then she would push me to get going again.

Of course, it wasn't always fun and games. Once we decided to take Ellen one Sunday afternoon to the library where they were having a musical show. Ellen loves music, and we thought this would entertain her. Ellen decided she didn't like music anymore. In fact, she decided TLW (The Little Woman) and I didn't either! This came as a shock to me. As we waited in line in the library theater line, she decided to let strangers know what she thought of them. If someone came too close to her, she would smack him or her. We would apologize, and the victim would look at Ellen and understand. Ellen decided to take on the whole line, in fact, she was ready to wipe out the whole library! As we tried to coax her back to the car, she decided to pull a Mahatma Gandhi on us. She ‘peacefully' sat down in the parking lot, refusing to get up. We tried everything we could until some stranger came by and helped me lift her up and put her in the car! She was a teenager at that point.

Then there was a trip down to Virginia Beach one year. We decided to go to dinner and went to this local seafood place. It was a large restaurant, and it was popular and packed. We went through the whole restaurant to this waiting area. Ellen decided her time was too valuable to wait, and besides, she was hungry. She started to look menacingly at other people's plates. That was our cue to move on out of there, ASAP! TLW grabbed her by the arm and started to rush her out, as I followed. As we passed one poor soul, who was minding his business while eating his dinner, Ellen reached out and smacked him in the back of the head as she passed the table. The poor bastard went face forward, almost into his plate! When he looked up, Ellen was long gone, and I thought I was heading for a fistfight! The poor man literally had no idea what hit him. I hope he blamed it on the hot sauce.

As aggressive as she was in strange situations, she was well loved in familiar surroundings. Once we took a ride out to Six Flags in New Jersey. It was a rainy damp morning, and the park was nearly empty. There was no waiting, so it was perfect. Suddenly, there was a yell: "Hi Ellen!" Standing across the lot at another ride was a gentleman who knew Ellen from her day program. Ellen gave this guy a big hug. It took a lot for us to get her to stop hugging people, strangers and all, the rest of the day!

In the weeks to come, I hope to write about a lot of the things that have occurred to TLW and me and the fact that life was not all bad with Ellen.

The waiting room at the Nuclear Medicine section of Stony Brook Medical Center was busy one Monday morning when I arrived. My daughter Ellen was to be checked out for possible abnormality in her digestive system. This requires her fasting. She is given an egg that is made with a small amount of radiation, which she eats, and every hour they take a picture. She must be perfectly still for 60 seconds as the camera does its work. This is repeated an hour later, then another hour later, then finally one more time an hour later. The whole process takes about four hours.

If you know anything about people with mental disabilities, and my daughter, in particular, you know they will not follow orders. You might fool them into doing something, but then you have a fight on your hands. Ellen does things her way, no matter what the protocol is: you better follow her instructions.

Ellen is 114.6 pounds, about 5 feet tall, with spindly arms and legs. Dynamite IS smaller but doesn't carry the explosive power of Ellen. You can at least control dynamite if you are careful. Not Ellen! Mr. Highhopes enters the waiting room, a man about mid-forties, in a white smock with mandatory serious face and pens in his pocket. He relates the procedure he will employ to get the picture.

Mr. Highhopes: "We will feed her an egg with a little radioactive material in it. This is so we can trace the path of the food to see where it goes, and how she is digesting it. We need her to lie perfectly still on a table for one minute as we shoot the picture."

I start to laugh out loud. Mr. Highhopes is staring at me, quizzically.

Me: "You will not get any pictures from her. She will not cooperate."

Mr. Highhopes: "Well, we could shoot her standing up." (That thought occurred to me many times when she refused to cooperate!)

Starting to feel this uncontrollable urge to laugh, I check myself.

Me; "OK, we can TRY, but I don't think it will work!"

Off we go to the camera room. Ellen is in a wheelchair, being pushed by a woman caretaker, a male caretaker, Mr. Highhopes and myself.

The room is cramped and now, very crowded. Someone brings Ellen an egg sandwich with the radioactive material, and we ask her to eat. She hasn't eaten breakfast, so this should be ‘easy'.

Me; "Here Ellen, eat. Emmm looks good Ellen!"

She shakes her head no. "Aw, come on Ellen, eat." Again, her head goes sideways, very vigorously.

"For Daddy?"

Now she is really shaking it "NO"!

"How about for Mommy?"

She opens her mouth and starts to eat.

Now we decide to liberate her from the wheelchair. The reason she is in the wheelchair is because that is the only way to control her through the hospital parking lot, in the elevators, and through the hospital, protecting the visitors: staff and patients from physical destruction if they get in her way.

I coax her to stand up and we manage to somehow worm her into the two sections of the camera. Now, all we need to do is get her to face toward her right.

There is suddenly a look, which comes from my little girl. That sweet little girl we all love so much. With her big browns that look up so innocently at me, she suddenly starts looking like Iron Mike Tyson! The look seems to say: "OK, who wants it first? Which one of you turkeys' wants to go down in a blaze of glory first? Or do you want to all die at once? Either way, I don't have a preference."

I make the first move. (I am stupid) Sweet little Ellen, 114.6 pounds of her, pushes her 200-pound father across the room! The two caretakers are holding on to each other, leaving a large yellow puddle under them and Mr. Highhopes is hastily packing up and heading toward the door. He didn't wet his pants, but I did notice a large bulge sticking out of his behind as he ran or should I say flew past me.

Ellen knows how to say two words. The word for Mommy is: "Mumma", and her word for happy is: "Appy."

As we left the hospital, she looked at me, patted herself on her head and said: "Appy?"

One Sunday night I took my daughter home to her residence in Shoreham/Wading River. It is a 92-bed facility for men and women with special needs. Depending on how happy she is, she will either be coaxed out of the car by me or happily and giggly climb out of the back seat.

As we walked toward the entrance from the parked car, I spotted a couple who were leaving the facility after visiting their daughter for the day. His name is Jack and is a former board member, and so he knew where he was. My daughter Ellen would remind him anyway.

As we walked Jack acknowledged me and we started to chat a little when my Ellen went up to him and gave him probably the biggest hug he ever got, maybe bigger than anything his wife ever gave him. Jack stood his ground as he said hello to Ellen and Ellen just continued to hug. She then turned her attention to his wife who was standing behind her opened the car door on the passenger's side. Although Ellen doesn't speak, she started to make a fuss over this woman too.

Being in an environment that accepts Ellen for who she is, it was easy for these nice people to accept Ellen's enthusiasm for their being there. As they drove away, I continued to walk Ellen to the front door and as we entered the building, she looked around with just a shift of her big eyes, kind of saying: "Is there anyone here to greet me?" Then she entered her section of the building and ran forward toward the main room where all her friends are, and started a screeching happy noise as she saw everyone, running up to the houseparent hugging her too.

Suddenly, her daddy who had her attention all afternoon, was no longer important, forgotten and as she distanced herself from him, never looking back! I guess after all those years where she never wanted me to leave her, she is now comfortable with where she is and more importantly, who she is. It turns out, no matter where I am in the agency, the main office, the school or workshop, or even residences, they all know her and all love her. She is a character!

Being the parent of a child with a disability, I often wonder when we as parents of those children, reach a breaking point. Being a co-chair of the Guardianship Committee, I see parents that need to surrender their roles as caretakers, because they are too old to care for their adult children. They keep their faith and I wonder how? Many of these children with disabilities do not toilet themselves, nor do they speak or communicate in any way or form, except to cry! The despair is overwhelming, as is the resentment that follows. The aged parents come to the agency, many are too old to even travel, and yet they dream. Some travel all the way to Albany to conventions and meetings about their children, stooped over, in pain with walkers, canes and still dream of a better life for their adult child. They place their faith in God, then: get to work!

Many people start to question if there is a God if they should continue to believe in Him and if it would matter. After all, their child or sibling did nothing wrong, and here more than one is suffering, both the disabled person and the caretakers, and family.

We see our daughter Ellen about twice a month. We pick her up from her home, where she has an air-conditioned bedroom, decorated to the hilt, with reminders of her family all about her. She lives with seven other people, all in similar degrees of suffering, all with the same loving care. Still, when we look into her eyes, we sometimes become very angry with God. We start resenting even the spiritual moments we do spend. We see Ellen, and we see innocence, love, and affection. We witness her happiness and her giggles when I do stupid things to make her laugh. Then again, we wonder: why?

When we were growing as a young family, it was difficult to accept the fact that the dream was over, that new plans were needed to be put in place, and in a hurry. We witnessed siblings with children, discussing normal growth patterns, and we harbored sadness, were left out of the conversations and became aware that our lives were to be different and difficult. We saw the awkwardness of our parents and siblings in trying to communicate with Ellen, and Ellen trying back. It seemed like people were saying: "Come get this child, please, I'm very uncomfortable with her." We understood as her parents, but we still felt the hurt, the second-class citizens we as a young family felt.

But if God took care of all of the life's inequities, what would be our purpose here on earth? How would we demonstrate humanity? How would we be relevant to this world? I know that all those people in the past, in spite of their discomfort with Ellen, were merely human, suffering in their own small way with the disability that Ellen has. No harm or hurt could come to Ellen, and today we see that clearly. But I think I see clearly what God is doing, what he is saying, and what he has done. Ellen is a teacher. She drives home a lesson every day, that there is indeed a God. He is in all of us, and by our actions, what we say and do, makes us relevant to this world.

I truly believe: that God only observes. I think he wants us to do his work. We must reach down and wipe the tear of a child. We must reach down to help the poor and help heal the sick. We must reach down and aid the elderly because then we can reach up and become part of humanity, and a child of God.

Many years ago, when my son Joseph was dying in North Shore University Hospital, my wife and I had spent round the clock time with him. We had slept the night in a waiting room, and from exhaustion, we went home to shower and get a bit of rest. As I lay on the couch, the phone rang, and the doctor on the other end told us to hurry, the time had come. We went to the hospital that cold January night, and as we entered the building and were climbing the stairs, a robed figure, sped past us and raced up the stairs. That robed figure was a priest, racing to my son's deathbed to give us spiritual comfort. It helped. He helped us get a perspective during a cold horrible time.

Is there a God? I think so.

For thirty-eight years, I've been working on getting my daughter Ellen to say just one word, Dad, or daddy, or even dada. For all these past thirty-eight years' she says: "momma" and will say it often. When she sees me, she calls me: "Momma" and I understand it. She can't form words in her mouth and can only say: happy and momma, and manages to survive with the help and love of some truly wonderful people who support her every day!

These past few years I would meet up with her for her various doctor's appointments and when she sees me she calls out: "Momma!" and comes running to hug me. When that happens, a funny thing happens to me, I lose my reserve, my sense of being in public, and hug her back. She smiles and I realize, she loves me for being who I am, no pretense needed, no conditions need to be met.

Once, while at a visit to the hospital, I sat with two caretakers who assist Ellen, and waited for a doctor to come out to talk to me. One asked me if she said any other words other than those I described. I said I wish she would say daddy, and if she ever did, I would give a million dollars to hear her call me that. Almost immediately, the word spread that I was awarding a million bucks for anyone who could get Ellen to say, daddy.

At every doctor's appointment, they were working feverishly to get Ellen to say it. But knowing Ellen, you don't make her do anything she doesn't want to do (Like her mother). So I would lean back amused and confident, thinking my money was safe.

Then comes Father's Day. TLW (The Little Woman) comes out to the den with my daughter, holding a present for me, and instructs Ellen to "give it to Daddy." My daughter flings the present at me and laughs; this is how she is. I open the present and make a big deal, but she really doesn't understand it all, herself.

Mom goes back to making dinner and Ellen is standing over me. She works hard to get my attention and is ‘talking' to me in her own way. Then suddenly, out of nowhere, with prompting, on Father's Day, she says: "DADA DADA!"

Perhaps my best Father's Day ever.