Reflections on Fatherhood Beyond Special Needs

Instead of writing a “Father’s Day” post myself, I asked my husband to write – reflect on what it has been like for him to father our three children, to father a special needs child. Though he was on call at the hospital the whole weekend, he took time to write this piece. His experiences and thoughts are similar and different than mine, but as real as mine as well.

Yesterday was Father’s Day, and as I was sitting with my eldest son in the afternoon in his room, we had one of those moments when he was looking at me straight in the eye with amazing clarity. He was listening intently as I told him repeatedly, “I love you Lil D.” Seconds later he retreated back under his blanket, weeping inconsolably and hitting himself; that dreadful sound of his little hands slapping his forehead with intense ferocity pierced my ears yet again.

And just like that, the rare moment where I had some semblance of an intimate emotional interaction with Lil D was gone. Unfortunately, these moments have become increasingly rare lately. Lil D has been going through a bad phase for months now, which my wife has written about. I sat down on the floor next to him waiting for him to stop. I knew that trying to physically stop him would only upset him into hitting himself even harder. He would stop for a second or two, pull me towards him, and pinch me hard on my arm. He would then push me away and start slapping his forehead again.

“What is he trying to tell me?” “What does he want me to do?” “How can I make this stop?” “How can I help my son?” These questions have been gnawing at me from inside for months now. The feeling of hopelessness and the frustration of not being able to help my own son is becoming increasingly unbearable. I am a physician, and for the past several years I have helped so many patients. But this is my own son, and I feel so helpless!

My wife has been obsessively looking into medical interventions and theories and reasons as to why he is suffering and behaving like this. She’s always taken the lead with him with his schooling, treatments, and behaviors because I have such a demanding job — and these are how our roles have played out over the years. So, though I know we are trying our best to figure things out, it still is a rather helpless feeling for me.

As I sat despondently on the rocking chair in his room some familiar thoughts raced through my head “Does he even love me?” “Have I let him down?” “Will he ever forgive me for the times that I have gotten upset or yelled at him for some his behaviors; for things that he has no control over?” I began to reminisce through the past few years.

This was our 11th Father’s Day together. Of course he loves me but every father yearns to hear those words, “I love you, Dad!” Our other two “normal” kids say that several times a day, but I want to hear it from our first born, the boy who gave me the privilege of being a father!

Having Children – Especially a Special Needs Child – Changes Everything

Dilshad and I had Lil D during the first year of our marriage. It was quite a surprise to us actually when we found out that Dilshad was pregnant. We were living in New York City in a small one bedroom apartment, and finances were tight. We were surviving on a resident’s income. The birth of Lil D was a joyous moment, not only for us but for the entire family. Our first born — he was also the first grandchild for Dilshad’s parents, and the first potha (paternal grandson), waris (heir apparent) for my parents.

We had great hopes and expectations for our first child. He was our bundle of joy, our pride! But within a few years it became quite apparent that something was seriously wrong. Dilshad knew it before, as I went through a period of denial. Our expectations have changed a lot over the past years, we have learned to be realistic and for the most part be happy with what we have. But one cannot deny that every now and then we ponder about what could have been. When I see a “normal” kid of Lil D’s age at the school, at the playground, at social events, or at the mosque, every now and then it hits me again. What a different life Lil D lives — and as an extension, we live as well.

When Amal was born three years after Lil D, it was like having a first child in many ways. We had adjusted to life with Lil D in a certain way – a life fueled by therapies and research and different interventions — and now suddenly we had a “normal” kid. We had to relearn how to take care of a non-special needs child. Amal has been one of the best things that happened to our family. I always tell Dilshad that she is the glue that keeps our family together. She has an unmatched zest for life. She’s like a ray of sunshine in our lives, and her love for Lil D is unwavering and insurmountable.

Raising her after the struggles with Lil D was a refreshing change. We also learned to appreciate every little thing that much more, things that others may take for granted. Her first smile, her first eye contact, her first words, every little thing carried so much more meaning for us. Amal’s childhood has been so different from Lil D’s, and yet they have so much in common – their common love for each other, their need for affection, their need to be left alone at times, their desperate need to be understood. She has now completed third grade as an honor roll student and has been accepted into the schools gifted program. Dilshad jokes that she has spent the last several months embroiled in exceptional education meetings on two vast ends of the spectrums for Lil D and Amal.

Our youngest, Hamza, is seven years younger to Lil D. He is the clown of the family, a bundle of energy, robust and enthusiastic; our comic relief. Even though he is our third child, raising him sometimes feels like it’s our first time as well. We do those typical father and son things. Sometimes it makes me realize even more what I’ve missed with Lil D. I wish I had the chance to do all those things with Lil D too — soccer practice, playing baseball, swimming lessons, lying in the hammock reading a book on a warm afternoon … We do partake in these activities, but it’s very different. We do a lot of fun things with Lil D, but there is never that sense of normalcy.

A Father’s Day Gift

I often find myself struggling in my efforts to give equal time to all our children. As soon as I come home from the hospital, the younger two grab me and want constant attention. Dilshad reminds me that Lil D is upstairs waiting in his room for me and always nudges me to go and spend some time with him. (With his past months of fluctuating behaviors, he has now taken to staying in his room most of the day, unless one of us coaxes him or forces him to come out and interact with us.) Recently I’ve been making a conscious effort to spend more time with Lil D. Dilshad tries to keep the other two at bay downstairs. These days Lil D mostly ignores me (or anyone else) when I’m in his room. To him, I’m just a distraction. But when he does look at me and makes eye contact, it makes that all the more special.

Lil D will forever hold a special place in my heart. I love him for who he is, and over the years I’ve learned not to obsess over what could’ve been. Honestly, at this point I cannot even imagine it otherwise. He has taught me a lot of things over the years; I am a better person because of him; a much more patient, compassionate person. I have learned to appreciate the little things in life, and I’ve learnt to ignore petty things.

While Lil D may never use words to describe his feelings of love for me, I’ve learnt to appreciate nonverbal expressions of love. One thing I’ve realized is that Lil D’s love is unconditional; his faith in me and his mother is unquestionable. He exhibits every day in nonverbal ways that he loves me – the smile that he gives me, that spontaneous hug, the way he grabs my hand and leads me into his room to lie down with him on the floor next to him, the way he seeks me out in a room full of strangers, or when he insists that I walk him all the way to his classroom when I drop him off at school.

I know he loves me. I just do.

Last week he gave me a very special gift for Father’s Day. The gift came a little early, on his graduation day from elementary school. Dilshad and I had this wild dream — we wanted him to be able to walk down the aisle and accept a graduation medal from his principal in front of an auditorium filled with his schoolmates and their parents. We knew it was a long shot; the odds were stacked heavily against us. This was a child who for months now had confined himself to the four walls of his room for the most part of the day.

He had been evading emotional contact with other humans, even his own family with regularity; his only social interactions outside of the house have been with his peers and teachers in his classroom, and that (which used to be easier in the past) had been a struggle as well. And, we were expecting him to walk out in front of 300 odd people to accept his medal!

But he knew something that we did not. He knew how much it meant for us, especially for his mother. He had it all figured out in his little head but didn’t drop us any hints. In fact, he did everything on the contrary that led us to think otherwise. But when the moment came, he calmly held my hand and walked all the way across the auditorium in front of all those people, in front of his adoring mom, to receive the graduation medal from his principal.

I can assure you that it must have been one of the most difficult tasks for him to accomplish. To come out of his shell, this cocoon that he had built around himself for so many days, he must have had to dig deep and garner every ounce of courage within his little body. It must have taken immense determination and sheer will for him to be able to do that. But he did it. As much as it was difficult for him or pained him, he did it for us. That day he won the hearts of everyone who was present. If that was not an expression of unconditional love for his parents, I don’t know what is!

Lil D’s elementary school graduation is something Dilshad and I will cherish for the rest of our lives. It was something very special that only we had the privilege of sharing with him. Neither of his grandparents, siblings, uncles or aunts was able to attend the ceremony because of compelling reasons. Nor were we able to capture the moment on film because both the cameras that we took for the ceremony malfunctioned inexplicably; even our friend’s video camera ran out of memory just before that moment. There is only one lone picture, taken randomly by a friend of Lil D’s teacher.

But perhaps that was exactly how it was meant to be, this was a special moment just for the three of us to savor. The image of him walking, holding my hand, will forever be etched in our minds as a complete, pristine, inerasable memory. As we walked back to Lil D’s classroom after the graduation he asked me for his favorite candy, Kit Kat. He then looked me straight in the eye and gave me a big smile, a smile that said “I love you” louder than words could ever say!

That was a wonderful Father’s Day’s gift.

— Mir T. Ali is a pulmonologist and sleep physician in Central Virginia and father to three wonderful children.