This month’s Quote:
“Relationships that last are the ones that are constantly being built.” – Gigi
Since most care-taking duties tend to fall into the hands of mothers, we can (and often do) forget that fathers exist is the parent too. When you have a child born prematurely and/or with special needs, these care-taking duties can escalate to a different realm and have an almost unimaginable pressure for both parents. We seem to understand this pressure with mothers and readily offer support but the same doesn’t always apply to fathers and so often, they are left hanging on (barely). These preemie and special needs dads often have unique and valuable insights into a number of key things, such as but not limited to:
a) their role as a special parent,
b) how this role affects them emotionally and professionally,
c) the impact of being a special parent can have within their varied roles of husband, partner, friend, provider, etc, and
d) how they can offer a different level and type of support both to their child and family.
So, in thinking on this, I decided to ask my husband Jesus what his insights were about being the father of a child with special needs – what was/is it like for him? Note-to-self: Finally getting your husband’s honest perspective on his thoughts/feelings/ideas/ around your joint surreal entry into the worlds of prematurity and special needs, an unspeakable number of years post, just may not be the best way to maintain a relationship. Hmmmm…..is there a lesson that I need to be learning in all of this? I degress
He thought a while and then gave me the following five (5) answers – some of which I wasn’t quite expecting. I must preface the following statements as saying that they may or may not be true for all fathers – I am sure they are not – but rather the experiences of one special father. In sharing them, I hope that his experiences and the lessons we can learn from them, will be beneficial for you and help make both parents much more aware of the strengths and needs of each other in their journey of special parenting.
1) “Men need to constantly prove themselves, so sometimes having a child with special needs may make them feel like they are not able to do this”
If your child is not the same as the other kids, then sometimes you may feel like you don’t have the same degree of shared experience as and/or connection with other parents. You can’t say that ‘Oh my child likes kicking a ball” or ‘my little girl is taking ballet classes’.
I found it interesting that Jesus chose the word “proving” as my initial thought was why would you need/want to prove anything? In stepping back a second and actually listening to him, I understood better that this ‘proving’ was in many ways a confirmation of something. So, if my child can throw a ball, feed him/herself, or whatever it is that constitutes ‘sameness’ (i.e. that my child is the same as everyone else), then maybe this confirms that either he doesn’t have a special need or that his special need is so minor that it doesn’t really affect his daily life.
Jesus ended his comment by saying this: ‘Despite you knowing that your child, like every child is a gift from God and that what he doesn’t have in one (1) area, he more than makes up for it in another, you still feel a sense of loss.”
Bingo – that’s it! Acknowledging and accepting loss (of what might have been) is probably one of the hardest things about coping with your child having special needs. Many of us, both mothers and fathers, struggle with this because we think that maybe we are bad parents for feeling this way. We are not – we are just being honest on the deepest of levels with ourselves – and honesty only produces good things in the long-run.
2) “Feeling left out” (part A) – Jesus says “even though I have been with our son since his early birth, his multiple surgeries and most of his subsequent doctor’s visits, school meetings, etc., when we are in front of medical and/or educational personnel, for the most part, they all tend to speak to you (i.e. me) like I am not even there.”
This is true and I have noticed it myself. Even when I would turn to him and try to include him in on the conversation, the medical staff would tend to only briefly acknowledge Jesus, and then turn back to me. One father described this as feeling like, “the invisible family member.” (Exceptional Parent magazine, August, 1994)
I think that because mothers typically spend a significant amount of time with their children, medical personnel just tend to assume that mothers are therefore the ‘sole caregiver.’ It is an assumption that is rarely ever questioned or challenged and one that continues throughout your child’s life and goes beyond the medical world and spills into the educational realm as well. Mothers are normally always the 1st and only go-to person concerning their children.
Steve Fischer, another father of a child with special needs, puts it this way: “I readily admit that my wife assumes the greater percentage of the day-to-day care of our child. However, I am also a caregiver in my little angel’s life, and therefore deserve the respect and consideration shared by my wife.”
Being mindful of this phenomenon, we as mothers need to make sure that we put our husbands on equal footing when it comes to the care of our child. I noticed, in hindsight, that I would often unconsciously play into this assumption of being the sole caregiver and at all of Alejandro’s doctor’s visits/surgeries, etc – would rattle off his extensive medical history and answer all of the questions – with Jesus sitting right there. Now that I am aware of this assumption, how I fed into it and most importantly, how it made Jesus feel, I am very mindful now to place him fully and squarely into the picture – even when he is not present. For example, I make a point to say ‘we think this’ or ‘my husband and I have this question’ or ‘let me speak with my husband before we make that decision’, etc. This way of speaking has now fed into my conversations about Alejandro at his school.
3) ‘Feeling left out’ (part B) – “Sometimes I feel like you spend so much time with Alejandro, taking care of all of the many things that he needs, that you at times, forget about me.”
Now this is a sensitive point to discuss and one that I didn’t necessarily want to hear:-) – and I would guess a lot of the women out there don’t want to hear it either, but I can see where Jesus is coming from.
As women, we can and often do put our all in all in being a mother – especially when our child has challenges outside of the norm. The lioness comes out in us and we want to protect our ‘cub’ – our child. This is great and shouldn’t be altered in any way but we must remember that everything is about balance. Balancing your time as parent, with your time as a spouse/partner, with your time as a person.
So, in order for you to be the parents you want to be, you must first be the couple you want to be. Work on spending time together, even if it is just an extra 5 minutes of hand-holding or saying thank-you or I love you a little more throughout the day.
4) ‘Feeling Powerless’ – “Men, by nature, are problem-solvers and when a situation arises, their 1st instinct is to fix it/solve it. You can’t ‘fix’ what has happened with your child, so sometimes it makes you feel a little powerless.”
I must clarify this statement a little and say that we are not talking about fixing your child – they are not broken and don’t need any fixing at all. The solving/fixing idea is more about men instinctively wanting to make the situation better, to ease their child’s and/or family’s suffering or remove any difficult challenges. It’s like wanting to put yourself in your child’s place so that you deal with all of the obstacles and not them. I can completely understand this as many times, I have wanted to be the one under the surgeon’s knife or the one’s who’s blind or the one who is sick – simply so that Alejandro didn’t have to go through the pain and challenges that were before him.
In addition, sometimes men (and women) can also feel powerless because the medical technology can in some ways keep them from fully enjoying their child. For example, if your child has a tracheotomy, you can’t playfully throw them up in the air.
I think the emphasis here should be focusing on what you can do. Yes, you may not be able to toss them up high in the air, but there are still a hundred other things you can do to bring a smile to their lips and put a twinkle in their eyes.
5) The Tough Guy Has Needs Too! – “Guys have emotions[too] but just tend to express them in very different ways than women”
Men and Women different? No way:-). We need only to just look at the famous ‘Men are from Mars, Women are from Venus’ book by John Gray, Ph.D. , where he literally places men and women on two different planets. Loosely speaking, it says that women are the more emotional creatures while men tend to go in their [mental and emotional] cave.
I’m sure many of us have conditioned ourselves to believe the above statement as truth in its entirety and have incorrectly perhaps taken away from it that men are just emotion-less people. This is so far away from the truth. Research done at the University of Missouri-St. Louis on fathers of babies born prematurely, shows that fathers experience a whole range of very intense feelings [frustration, fear and alienation, etc) , but often tend to keep their emotions inside. It stated that [fathers] may[be] sitting quietly at their child’s bedside, [but they are] keenly [watching] their babies and the health care providers who are caring for them.
The mother may be fretting all over the place, reading their child’s notes/medical records, asking questions, etc. Since the father oftentimes does not show his involvement in this way, does this mean that he is any less involved in his child’s care? Surely not – men just have different needs as well as different ways of expressing them.
One personal example of these differing needs is this: my husband and I each were a part of a tele-support call for mothers and fathers, respectively, of children with Retinopathy of Prematurity (ROP), the condition our son has. The ROP group for fathers met 1x/month for 1 hour and the facilatator had to literally ‘pull’ conversations out of the guys, whereas the mother’s group met weekly for 1 1/2 hours and many times the facilatator had to stop the conversation due to it running way past the alloted time slot. This huge difference in both frequency and duration for the mothers and fathers group highlights an awareness of the differing needs of men and women and how best to accomodate them.
It is so important for husbands to find a way to share his feelings with his wife and don’t try to continously feed into this ‘I need to be strong for my wife, my family, etc’ myth. I believe that one of the greatest ways to show your strength is to allow yourself to show your vulnerability.
So to all of the mothers reading this, be mindful and supportive of the ‘tough guy’ in your life. Ask him his thoughts, listen to what he has to say, give him the freedom to be vulnerable and allow him to be the amazing special parent that he already is.
Take good care of yourself and I would love to hear from you! Let me know your thoughts on this newsletter (would love to hear from the fathers) or anything else you want to share.