Dads of children with special needs; I’ve met loads of them in the work that I do, nowhere near as many as the Mums that I’ve met, but whenever I’ve met special needs Dads, whether in a group or on their own, if I talk with them for long enough at least one of these three themes will emerge. Themes that fill them with sadness, regret, pain, grief. Themes that special needs Dad’s don’t have to journey with, but most do… sometimes all of them.
So, what are these themes, and how can we as special needs Dad’s face up to them and overcome them?
You Don’t “Have To Be The Strong One”
This one comes up time, after time, after time. Dads who identify their role in the family as being the strong one, the one who tries to hold it all together. It’s a very manly ‘blokeish’ approach to take, convincing ourselves that we’ve got it all together. By inference, that makes the Mum the ‘weak one’, the one who is falling apart, the one who struggles most.
My experience of meeting loads of Mums and Dads is that this couldn’t be further from the truth. Scratch beneath the tough exterior of Dads, get them to start opening up about how they feel (yes, guys can talk about their feelings!) , even get them sharing in a group of other Dad’s about their child, their worries, the things they find hard, and they are as vulnerable and hurting as anyone else. It doesn’t take long for the tough shell to crack and to find that tough guys do cry… “Niagara Falls” as the taxi driver in the film ‘Scrooged’ puts it.
And let’s put an end to the lie that is that it’s the Mums who are weak, struggling, falling apart. In my experience I have never encountered more strong minded, determined and focused people than special needs Mums. Of course they have tough times too, it goes with the territory, but they generally seem better at dealing with the challenges they face, are better at sharing how they feel and talking about it.
Dads need to learn from Mums to be more willing to share how they are feeling, to be vulnerable, to seek out and find other Dads who are on a similar journey. It’s becoming a cliché, but there is still great truth in the saying that “It’s OK to not be OK”. There is strength in seeking help and support, talking is powerful and it doesn’t just help us, it helps those who we are talking with too. We’re all in this together (to use another cliché!) and there is strength in numbers (OK, I’ll stop the cliché’s now!)
There is support out there for Dads, places to engage as much or as little as you like. I’ve previously written and recorded resources for Dad.info (https://www2.dad.info) and I know they are great at providing a wealth of information, resources and support for Dads to tap into. Some friends of mine run Dads Take 5, part of Take 5 And Chat (www.take5andchat.org.uk). I’ll mention other organisations and groups that are useful to be in touch with later.
You’re Not In Control, You Can’t Fix This
Next up on the list of issues that I see all the time with special needs Dad is a sense of losing control, of not being able to fix this. Maybe picking up on the theme from the first section about “being the strong one”, Dads often respond to their child being diagnosed with a special need or disability by looking for ways to stay in control, to manage this, to fix this.
We look for an answer that is going to make it all go away and get life back to how it was before, but this can’t happen. Often without realising it, Dads are stuck in the ‘cycle of grief’ that can be just as real for a parent of a child diagnosed with a special need or disability as it can be for a bereaved parent. We grieve for what is lost, both the life we dreamed of for our child, and perhaps even the life we dreamed of for ourselves. I had wholly unrealistic dreams for James when he was born; dreams of him opening the batting for England at Lord’s in an Ashes Test Match. Dreams of him becoming a scientist and discovering a cure for one of the worlds worst diseases (how poignant that dream seems right now). Those dreams all changed forever when we received James’ diagnosis, and for a while I grieved those lost dreams before I discovered new ones.
The cycle of grief includes denial, a place a lot of Dads find themselves in. Then anger, that can be toxic and lead to broader relationship issues (see below), bargaining then follows which is again where many special needs Dads end up, looking for ways to negotiate a way out of this. Those with a faith might plead with God, “if only you’ll fix this I’ll be a good person, I’ll go to church…”. Depression can follow, when the realisation hits that there isn’t a way to do a deal on this, we can’t fix it (it may not even be broken if we look hard enough). Finally, acceptance, a point on the journey that isn’t reached by everyone, but a place where some sense of understanding and appreciation of ours and our child’s new life is emerging; and it’s not all dark, there is much to look forward to (see ‘Welcome To Holland’ at the end of this blog post).
Realising that we’re on a roller-coaster, that there will be good days and bad days, days full of joy and fun and days that are terrifying, is all part of acceptance. And the more we journey with others, the more we are willing to share, the more we can help others and be helped ourselves.
More groups or organisations out there that can be good to tap into include the Additional Needs Alliance, which has a Facebook group with 2,500 parents, children’s/youth workers, practitioners and more www.facebook.com/groups/additionalneedsalliance/ There is also a website packed with resources and information that you can link to from the Facebook group. Another great group to check out is ‘Who Let The Dads Out’, who provide loads of national and local support and help for Dads www.careforthefamily.org.uk/faith-in-the-family/wltdo Another helpful resource for Dads from Care for the Family is ‘Daddy Cool!’ https://www.careforthefamily.org.uk/faith-in-the-family/wltdo/daddy-cool-parenting-course
You Need To Stay
The final message for Dads here is linked to something that breaks my heart. In so many cases, too many cases, Dads leave. Maybe they have struggled to cope with “being the strong one” when inside they are broken. Maybe they have been overwhelmed journeying through the cycle of grief, and have got stuck at anger, lashing out at those nearest to them, or depression, unable to cope with their own emotions let alone be there for anyone else.
Maybe they have struggled with their child taking up all of the attention of their partner, leaving little left for them. Maybe this has led them down paths to seek comfort elsewhere. Maybe it’s something else that has meant that this family has, literally, reached breaking point.
Sadly, over half of families with a disabled child experience significant relationship difficulties and breakups, and although there are some amazing single Dads out there who continue to parent their child, in the vast majority of cases Mum is left with the huge responsibility of parenting a child with special needs alone. I’ve met many, many single Mums of children with special needs and they are often among the finest, most caring, most hardworking, most focussed people that I’ve encountered. I’ve learned a lot from them.
Not every relationship is fixable, sometimes the arrival of a diagnosis for a child is merely the final bit of pressure that opens up the cracks that have been there all along. But it doesn’t always have to end this way. If Dads are willing to understand their feelings better, to appreciate what is going on, to talk about them and seek support and help, and Mums too, then some of these relationship can be (and are) turned around.
Seek help before it’s too late. Your children need their Dad, especially boys who all the evidence shows benefit from a good, positive, male role model. Your partner needs someone who is going to share the load, be there for the family, work on raising your child together; someone to build a good life together with.
I’ve provided links to other Care for the Family resources, but there is one more I’d like to share; they provide family support around marriage and relationships, as well as for parents of children with special/additional needs. You can get to all of this here: www.careforthefamily.org.uk
It’s not weak to reach out for help, this really is “being the strong one”.
I hope these thoughts help Dads (and maybe some Mums too) to understand a bit of what might be going on in their lives, to realise that it’s normal for this to happen and that they are not alone, and how to find information, resources, help and support.
Am I perfect at all of this? Of course not, none of us are, I’m as broken and struggling as the next man. I have bad days, I behave like an idiot, but by understanding why and by being willing to talk about it and do something about it I have learned that it doesn’t have to stay that way. I hope you can join me on that journey, thanks for taking the first step by reading this.
p.s. I promised you that “Welcome To Holland” illustration… Here is is, along with a downloadable version afterwards, I hope you find it helpful. See also the links to further related blog posts afterwards:
WELCOME TO HOLLAND
Emily Perl Kingsley
Copyright © 1987 by Emily Perl Kingsley. All rights reserved.
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.” “Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss. But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.
Here’s a downloadable PDF of the story: Welcome to Holland
Additional/Special Needs Parenting: Welcome To Holland, Not Italy
Are Additional/Special Needs Families More Likely To Break Apart?
Where Are All The Dads Of Children With Special Needs?
Image rights: Header Photo of James and Mark © Mark Arnold