November 28, 2018|PARENTS, FAMILY
It’s been the mantra since the dawn of mankind.
God said to Adam, “Did you eat from the tree of knowledge?”
Adam said, “Yes, but it was because Eve told me to.”
Of course, this is a loose translation, but the sentiment has been shared by every man until now. My wife asked me to write a blog post describing what it has been like to be the father of children who are disabled. And, because I support my wife and would love to sleep in my own bed, here I sit listening to Irish Christmas music explaining my experience with being a dad of special needs children.
When Michelle asked me if I wanted any more kids, at first, I said no. We already were raising two from her previous marriage. I had stepped in and become the main father figure in their lives. I had the family I had always wanted, but I saw the look on her face when I told her, “no.” I finally agreed to try to have one more, but I did not like my choice. I was angry with myself for not standing my ground and resented her for “making me” have more children. I held onto that resentment until she finally got pregnant 3 years later. When we found out that we were going to have quadruplets, we cried. How are we going to do this? How was I going to get out of this?
For their first two years, I was too tired to think. So many things happened, it would be a disservice to them to attempt to describe the events in a small blog post. You can read all about the first two years in my book, Sleep No More which has yet to be written since I am still the father of disabled surviving quadruplets.
The idea of surviving quadruplets is a bit confusing to most people especially since people see us with the three. When I tell people I have quadruplets, they furrow their brow. I see the confusion: “Isn’t quadruplets four? Where’s the other one?” I struggle with this concept as well. Not because I don’t understand it, but I don’t want to put anyone in a situation where they feel bad for me.
My wife gave birth to four children: Margaret, James, Martha, and Joseph (in that order). Martha died the next morning after developing a cerebral hemorrhage. and I explain that one died. I have gotten every response you can think of. “Oh, I’m so sorry.” to “Well, that must have made it easier to take care of the other three.” I have always looked at it like the fingers of a hand. If you lost your finger in an accident, you would be reminded of that accident every time you look at your hand. When I see my beautiful children, I am reminded every time that there is one that is missing.
When they were two, we moved back to Las Vegas, and I eventually got a job teaching middle school. No big feat; I knew the principal. I buried myself in work. I became engrossed in teaching. I poured every bit of energy into my job and left Michelle to take care of the kids. My only true interaction came at bedtime. It was my job to put them to bed. We would read a story, and then I would sing Twinkle Twinkle Little Star, twice, practically every night from the night they came home from the hospital. I kissed them, told them I loved them, and prayed with them.
Michelle began to tell me there were things wrong with them. Margaret’s not speaking, Joseph still isn’t walking, James reads at 2 and can multiply at five. Margaret stares at the television with a blank stare on her face. She watches Blues Clues over and over but doesn’t say anything. Margaret is grunting. Joseph is 3 and doesn’t talk. He’s 4 and doesn’t walk. Margaret only talks by repeating what she hears on television. She’s not answering my questions. She’s just quoting Blues Clues. Joseph broke his collarbone because he fell, randomly, off the sofa. Margaret has imaginary friends. Lots of them!
When she would tell me these things, I brushed them off. “If the doctor tells you they’ll catch up, then they will catch up. If the doctor says they are fine, they are fine.”
Michelle, being the researcher she was, poured every waking minute that she was not single-handedly taking care of disabled surviving quadruplets into trying to figure out why they were acting the way they were. Doctors would tell her one thing, and she would read something else. She would tell me her opinion. I didn’t know; I didn’t care. She would tell me about a study she read about neuropathways, how they develop, and how a child’s growth may be determined by an overabundance of protein or was it a lack of protein or too many vaccinations or by some chemical imbalance or by genetics. She went to every specialist she could see. She asked every doctor to have every test that could be run. My family accused her of Munchhausen’s by proxy. They told her me was forcing them to be sick. Conflicted, I could see their behavior, but I could hear my family telling me that Michelle is causing it.
She was upset, but she was undeterred. She was dogged with the medical “professionals.” They could not argue with her. She always won. Her logic was flawless. We joked for a while that Joseph was a million-dollar baby. Without insurance, Joseph alone, would have cost us a million dollars between prenatal care, birth, NICU, and various surgeries. They easily cost another million with the scans and tests they ran until we accepted the inevitable when Joseph was 7; we may never truly know why he is the way he is so at this point he is considered to be “medically complex” and is diagnosed symptomatically. Through it all, Michelle learned everything that Joseph was not. Michelle learned about diffuse white-matter brain injury, hypoxic-ischemic encephalopathy (HIE), and that Margaret was injured before birth due to the nurses not taking action when she told them she was having contractions. She learned everything she could about neuropsychological domains. She learned everything she could about autism, ADHD, how to treat it, how to alter a diet, how to provide stimulation, how to diffuse a situation. She would tell me and try to engage me, and I refused to care. Five years after the kids were born, I moved out.
Michelle moved to Phoenix with the kids. I stayed in Las Vegas. I was only passively involved in the kids’ lives. I talked to them on the phone some. I visited a few times, but I was not connected with them until 4 months later.
I went to church the Sunday after Christmas and listened to a guest minister speak about taking care of money. He said, “if you want to save money, and your partner wants to spend money, it will never work. You have to work together.” While I sat there, I heard a voice tell me, “You need to go be the spiritual leader of your family.” I didn’t want to. The voice came again. “You need to go be the spiritual leader of your family.” The voice would not be denied, and I knew things would just get worse if I did not listen, so I called Michelle and told her. She didn’t believe me. Of course she wouldn’t. I did nothing but lie to her for the first 12 years of our marriage. She did however agree to let me come back and we would work on it.
I moved to Phoenix in June of 2013. She went to work and I stayed home with the kids. I became the primary caregiver to three special-needs children. We had therapists come several days a week and case workers come once a month. We had respite workers and I learned about my children. I continued to put them to bed, but now we watched television together and played games, and I read to them, and we went on adventures and hugged and loved on each other for 2 solid years. We became best friends.
I learned about Margaretville and it’s 200+ residents. I learned that James loves astronomy. I learned that Joseph has better rhythm than most adults. I made many mistakes thinking they were more capable than they were. I knew in my mind what they should be able to do based on my experience with my older kids. I had to relearn what parenting would entail. It would not be like it was with the older two. I didn’t realize that I may have to change diapers my entire life. In a few more years, I will need them myself.
Five years ago, I had a transformative experience. Two years later, I had another one when the first one only partly took. To say that I have fought this tooth and nail would be an understatement. But now that I have been redirected and am working with Michelle, I have come to understand just how complex life is in parenting children with special needs.
It takes dedication, tenacity and teamwork. Teamwork was something I struggled with. I wanted to do things my way. I teach, you learn. I give directions. You follow directions. I will talk, and you will listen. Michelle has been fighting for our children since they were born. She fought for me to care. She fought for a diagnosis. She fought for services and social security. She fought for therapists. She fought for their educational rights, and now she fights for the rights of others.
Michelle said in her group of 5000 members, she can count the number of men on one hand. “Why is that?” she asked me. It’s the reason for this post. I’m supposed to give the male perspective on why men are not equally as invested in the lives of their children as the mother. For me, it came down to selfishness. I didn’t want to give myself. The reasons vary though, I think. Some men think that having a special needs child is an attack on their masculinity. “My kids are not going to be disabled. Not if I have something to say about it.” Some men have a hard time showing any emotion and think that showing emotion is a sign of weakness. In my weakest moment, I left. I moved out. I got to make no decisions. There is no weaker position than to be absent.
The answer of why men are not more engaged may never be answered. If men were the ones giving birth, would the situation be reversed? Would women be disengaged? Whatever the reason, the best decision I ever made was to become active in my children’s lives. To know them intimately. Anyone can show up to the park, but what do you do at the park? Do you play on your phone while the kids run? How often do you read to them? Play a game with them? Tell ghost stories? Go on adventures? (Even to Walmart…yikes).
Maybe the problem is that dads of kids with special needs don’t really know how to connect. They have been taught not to show emotion, so they have trouble connecting. If you have problems identifying with your special needs child, teach them something you enjoy. Music was the great unifier. I played old 80s songs. We learned to play the guitar. We learned to play the piano. But more importantly, find out what your children are interested in and become interested in those things. 90% of the time, our kids just want to hang out with us.
When my wife asked me to write this blog post, I told her no one would be interested in my perspective. How am I the dad of special-needs children? How do I do it? I don’t know. What’s the alternative? Not being a father to them? I tried that, and it didn’t work. I was literally TOLD to come home.
Now, I wouldn’t have it any other way. Yes, I still change diapers some nights. Yes, I still have to explain why imaginary friends do not make us push our brother. Yes, I still worry about my son losing his sight in his other eye, or breaking a collarbone again, or becoming so sick t. Yes, I still sing Twinkle Twinkle Little Star. I just don’t sing it twice anymore.
Being the father of special needs kids is different than being a father of typical children. Being the father of multiples is different than being a father to a single child. Being the father of quadruplets who have special needs? It’s the toughest and most rewarding jobs I have had. In the beginning, I didn’t want any of it; however, in the end, just like writing this blog post, I feel quite fortunate that my wife made me do it.
You are welcome to join us for more discussion on ADHD at our FB group, IEP/504 Assistance for parents of public school students from all over the United States, or at our homeschool group, Homeschooling Special (Needs) Kids. We also have a group for all parents and caregivers of special needs children called Special Needs Parenting Advice and Support where we discuss ALL things related to special needs care.
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