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5 DADS SHARE – PARENTING A CHILD WITH ADDITIONAL NEEDS

Father’s Day (in Australia Father’s Day is this weekend) seemed like a good opportunity to ask five Dads, parenting a child with additional needs, to share the challenges, the joys and what they would like others to understand about their role in the family.   Traditionally I find that we hear more from mothers about their experiences raising a child with additional needs and I was keen to learn more about how Dads feel.  I was thrilled when I received such open, honest and expressive pieces from our Dads.  I hope you enjoy the read and pass this on to some Dads.  They may be able to relate.

Introducing Brian

Please introduce yourself and your family.

My name is Brian. I’ve been married to Jennifer for 20 years. Our son, Christopher, is 4 years and is diagnosed with Spastic Quadriplegia Cerebral Palsy and Microcephaly. We live in Lansing, MI USA.

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Jennifer, Brian and Christopher

What has been the biggest challenge being a Dad to your child with additional needs?

The biggest challenge so far has been juggling appointments and work. In the states, our family leave laws are lacking and one tends to be at the mercy of there employer. So far, mine has been flexible.

How do you enjoy time with your son eg. shared interests and activities?

I love taking my son for walks in the park, exploring local festivals, and going swimming.

What do you wish outsiders, family, friends or even your spouse understood about your role as a Dad?

I think there’s a perception that the mother is always the primary care giver when that is not the case. Jennifer & I do co-parenting where care giving is about equal. Also, fathers can be as nurturing as mothers.

If you could take your child travelling (money, time and access are not an issue in this dream) where would you go and why?

I would love to take my son to Australia. A cousin of mine is married to an Aussie and I have made friends with a few Aussies on Facebook. It would be nice to visit and explore the country.

Thanks Brian and we can vouch for Australia being a great place to live or visit.  We’d welcome you and your family to Australia any day.

Introducing Alex.

Please introduce yourself, your family and tell me a little about your child with additional needs.

My name is Alex. I’m a Father to 3 kids – 3 and ½ year-old Hudson, and 22 month old twins Carter and Milla. My wonderful wife Samantha and I have been together for over 10 years.

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Both Carter and Milla contracted a virus shortly after birth which has left Carter with a range of additional needs. Carter has Cerebral Palsy Quadriplegia, Epilepsy, and vision and hearing impairments. At present Carter has no words (but lots of sounds and noises), and requires a range of support as he is unable to sit or stand independently. Carter has a smile that melts any heart, and a spark and charisma that draws people to him. We live in Medowie (just north of Newcastle NSW).

What has been the biggest challenge being a Dad to your child with additional needs?

I feel selfish answering this, as the biggest challenge has definitely been not being able to do the things I need to (or want to) as Carter is very demanding. Priorities change when you are a father of a child with additional needs. It has been very hard to “let it go” and learn to know what I can and can’t control. Much of the typical Dad jobs like mowing, maintenance etc. that is therapeutic to me gets put to the side. On a positive note, I just built Carter an adjustable therapy bench for his weight baring practice, complete with spots for his switch toys and other activities which is as equally rewarding and therapeutic.

Another challenge is trying not to think too far ahead into the future – Will Carter talk, will Carter walk, will he be able to attend the same school as his siblings? I celebrated my birthday a few weeks ago and it was very hard to see two of my children walk up to me and wish me a happy birthday, something I had previously taken for granted. My birthday acted as a “reference point” and I started to think of the previous 12 months, except on this day for whatever reason I could only focus on the things Carter hasn’t achieved, rather than all the fantastic progress that he actually has made. That night however, I sang Happy Birthday to myself with Carter on my lap, and at the “Hip Hip” part, he made noises indicating he knew the next part – I can’t describe the joy I felt in hearing this.

It’s also been very hard not having an equal share of the responsibilities, and not knowing how my wife and the children are whilst I’m at work. Carter averages about 2 to 3 appointments a week seeing a range of specialists and most of this falls on my wife’s shoulders. Sam does the majority of all the running around and digesting all the information discussed at the appointments. I am very fortunate to have a beautiful wife who takes it all in her stride, but it’s definitely hard not being there as much as I would like.

How do you enjoy time with your son/daughter eg. shared interests or activities.

Every weekend we try and get out of the house. It’s not always easy as Carter has very little independence, but I know I can always get a smile out of him if we play a bit of “rough and tumble”. Carter loves to be carried in the hiking backpack, and always laughs as soon as I place him on my back. It’s great because I can push the pram with the other two. I involve all the kids as often as possible, and we often go for a walk in a modified Billy-Cart that I made. Carter loves it when his siblings pay him attention, and Hudson loves to pull Carter in the cart.

What do you wish outsiders, family, friends or even your spouse understood about your role as Dad?

I’m very lucky that my wife, family and friends are very supportive and understanding. One thing that can’t be understated in a broader context is that Dads have the same range of challenges and emotions that the Mothers do, particularly in the case of raising a child with additional needs. At times we can undertake very different components of raising a child and will probably go about it in different ways to how a mother would, but we still experience the full range of emotions, but maybe just don’t show it in the same way as Mums. In this regard, the Cerebral Palsy Fathers Zone Facebook Group has been a great environment for us Dads to share our experiences and offer support.

If there is anything I would want others to understand, it would be that my role is incredibly rewarding when I see the smiles on my kids’ faces or when Carter reaches a milestone, particularly after knowing the time and effort involved.  It’s interesting to hear the comments from strangers when I get out with the kids by myself. Often I’ll have Carter in the back-pack, and Milla and Hudson in the pram. I am forever getting comments like “you’ve earned your dinner” or “you’ve got your hands full”. I’m not sure what strangers think my role should be, but I’m a very hands on Dad, and I wouldn’t have it any other way.

If you could take your child travelling anywhere (money, time issues are not an issue in this dream) where would you go and why?

I would love to take my children back to New Zealand. My wife and I hired a camper van just before the twins were born and we saw some simply breathtaking scenery. The South Island is a great place to visit and everybody is so nice. It reminds me of a time when life was much simpler – campfires, road-trips, fresh-air. I’d love to share these simple things with my family.

If you would like to follow along with Carter’s family, check out Carter’s Crew facebook page.

INTRODUCING TODD

Please introduce yourself, you family and tell me a little about your child with additional needs. 

My name is Todd and I’m the father of a six year girl named Lucy, Lucy has Cerebral Palsy and epilepsy as the result of a severe brain injury (stroke) during birthing process.  My wife Trudie and I also have a son Ty who is about to turn three.

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The result of Lucy’s brain injury is that she has severe brain damage in both hemispheres. Despite a much grimmer prognosis, Lucy has left hemipeigia CP with global developmental delay, visual and behavioural issues as well as epilepsy.  Lucy averages a seizure around once a month that can last up to two hours (status epilepticus). Lucy has difficulty with her gross and fine motor skills  especially on her left side.

What has been the biggest challenge being a Dad to your child with additional needs? 

There are many challenges facing a Dad of a CP child, here’s a couple that I think are worth mentioning;

I am currently in my 26th year in the Military, and be it good or bad I tend to compartmentalise the issues, I think most guys probably tend to do the same, so here’s my top couple in no particular order.

Managing expectation: Right from the outset the birth of our first child didn’t go according to how we quite rightly perceived it would and I guess this is an ongoing theme for the parent of a CP child. You have to accept early on that your child is not going to meet the normal milestones but instead will make their own.  A great example of this is that I used to get wound up about head circumference!  Lucy was in the bottom 3rd percentile!! Did it mean anything in the long run……no not really.   Personally I have given away the term milestones and prefer to think in achievements. As the parent of a CP child conquering the smallest activity can be cause for celebration.  Lucy pedalled her trike today under her own steam…….that’s an amazing achievement!!

Don’t lose hope:   When the prognosis was grim in the days following Lucy’s birth a wonderful neonatoligaist came to us and said “I’m a baby doctor and babies will do what they do”  what he meant was its OK to hope for the best outcome and strive to achieve it. Although Lucy has many issues that affect her daily life we are constantly surprised by her determination, resilience and all that she has achieved so far.

Don’t underestimate maternal instinct:  Every parent wants the best for their child but its mostly the mums who are fighting the good fight for services.   Tough job that can bring you down.   I am constantly in awe of Trudies tenacity to leave no stone unturned in the pursuit of Lucy’s well-being.  I guess the lesson for guys is stay ahead of the avalanche your wife needs you to be objective.

Mental health:  As a member of the Military I have had a number of mates over the years that have suffered with PTSD (Post Traumatic Stress Disorder) but its taken me a long time to come to terms with my own mental health issues and that it’s no different to theirs.  There’s a time to stand there and be strong but there is also a time to sort yourself out its just about recognising there is an issue.

How do you enjoy time with your son/daughter eg. shared interests or activities?

I think because of what Lucy has been through we have quite a special relationship. One of the few advantages to having a developmentally delayed daughter is they grow up that tiny bit slower. Lucy is six now and most of the time is a funny, loving and caring individual, what you see is what you get with Lucy and I love that. I have recently been away for a month with my work and Lucy really missed me which is lovely. We are lucky enough to have a pool and and Lucy particularly loves swimming with her daddy.

What do you wish outsiders, family, friends or even your spouse understood about your role as Dad?

I think that Dads overall tend to undersell how tough or serious things can be for a family with a CP/epilepsy child.  For our family CP is one thing but the epilepsy is another matter and the threat of a seizure is constantly on our mind.  Lucy sleeps with either myself or my wife every night so we can keep an eye on her which is difficult on our relationship.

Its not easy for us to do “ad-hoc” stuff. Lucy is very sensory sensitive and doesn’t do well when overloaded with input or when out of routine.  Lucy doesn’t cope with crowds or noise and there are far greater repercussions from a late night than a cranky child for us such as risk of seizure. We rarely go to any functions or gatherings after 4pm.

Managing a career with a CP child can be tough. I have been fortunate so far that my work has been quite flexible but that is not always going to be the case.   The stability our family requires comes at a price and I have not been able to take up a number of opportunities for travel and career advancement. I also often feel guilty being at work when I know things are tough on the home front.

If you could take your child travelling anywhere (money, time issues are not an issue in this dream) where would you go and why? 

For two years in a row we travelled to Fiji for an annual family holiday, the first time Lucy had a seizure an hour into the flight, this was one of the most heartbreaking moments for us.  We had worked and planned so hard to get there only to be treating a seizure on the plane.   Both sets of grandparents, and my wife and I shed a few tears on that plane. The second year we went to Fiji Lucy had a seizure literally as we were checking out of the resort which meant extending our stay another 24 hours. This seizure lasted nearly 3 hours and it was frightening being in a foreign country. Our neuro was available via mobile phone which we arranged prior to travel and we had a copy of our seizure management plan for the hospital staff.

We have since brought a caravan, I would dearly love to take the family around Australia, which of course is not possible because we need to be close to reasonable size hospitals in case Lucy has a seizure.

INTRODUCING PETER.

Please introduce yourself,your family and tell me a little about your child with additional needs.

My name is Peter and my beautiful wife is Joanna. We have been together for 6yrs and married for 3yrs.  My stepson, Tallis, is 10 and my daughter, Jazmine, is 5. They both have celebral palsy, due to being born premature. Tallis was born at 27 weeks and Jazmine at 25 weeks.  This was due to a medical condition which was found after Jazmine was born.  Both children are in wheelchairs and we work very hard with therapies to get them up, bearing weight and walking with the help of aids. Tallis also has autism and an intellectual impairment, which can be a challenge sometimes.

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Just this year we had to prepare Tallis for months prior to surgery on his hips and knees, to help minimise his anxiety. This surgery was because of him not walking, due to his cerebral palsy. Tallis was a trooper and it helps that he loves hospitals.  Jazmine also gets Botox in her legs every 6 months, which is followed by intensive physiotherapy afterward to help it work.

What has been the biggest challenge being a Dad to your child with additional needs?

The biggest challenge would be not having control over what is happening with your children. It sometimes feels like you are just there for the ride. We get through these times with our faith and support from family and friends.  Making sure there is time for just my wife and I also helps to survive the caos.

 How do you enjoy time with your son /daughter eg. shared interests or activities?

We, as a family, do a lot together.  We go and watch WWE wrestling and Monster Trucks,movies and bowling just to name a few.  We try and let them lead fairly normal lives.  Both of our children love going to church on Sunday and watching their Mother sing in the church worship team.

What do you wish outsiders,family,friends or even your spouse understood about your role as dad?

I try not to think about it, for me it’s just what I need to do. I wasn’t much of a Father to my older 4 children, from my first marriage, Clare ,Thomas, David and Sophie, due to working 19hr days most days, 7 days a week.  I worked this hard because that’s what I thought everyone expected me, as a Father, to do.  It left me having a heart attack that I  should not have survived.  In fact I survived two heart attacks within a six month period at 40 years of age. I was given another chance so I spend as much time as possible with my loved ones as we don’t know what’s going to happen day to day.  Life is too short to miss watching our children become the best they can be.  We both sometimes wish people understood we would rather tell people why our kids are wheelchair bound instead of staring or pointing at them. Some days it is offensive.

If you could take your child travelling anywhere (money,time issues are not an issue in this dream) where would you go and why?.

Travelling.  I would love to take them to America as Tallis loves american football, NASCAR and monster trucks. I would love Jazmine to see sturgis as she loves motorcycles.  Maybe we would take them to Disneyland also. Me and my wife would love to travel route 66, maybe in a muscle car.

INTRODUCING TRAVIS

Please introduce yourself,your family and tell me a little about your child with additional needs.

Hi, I am Travis.  I have my partner of 10 years and subsequent wife to be by my side, with 2 young men it tow.  Our boys James almost 4 yo with Ataxic CP and 2.5yo Mitchell have really completed our lives.  We believe we are just a regular family with an endless amount of appointments to attend which for us is just normal.

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We have known there was something ‘different’ with James since he was about 6 months old.  It took some time and even more time to actually sink in that his life will never be the same.  None the less he is always commented on as being the happiest man in the room.  His form of CP is the least common type which was for him just caused by a birth defect.  James’ cerebellum only grew to about half the size it should have.  With this form of CP, James had moderate to severe balance and co-ordination issues.  He is completely dependent and has to be monitored during tasks such as eating as this is a fine motor skill and his impairment means he can choke easily.  He has been assessed as a level 3 on the GMFCS scale which means he will have a fairly restricted life which will require the use of a wheelchair for mobility.

Mitchell is a very funny little man.  He is a great brother and a great son.  We very much feel that Mitchell has benefited greatly from the extra attention we pay to the finer details when teaching his bigger brother.  For example his speech is amazing; he gets complimented on very often for his abilities.  Mitchell loves ‘helping’ he is very inquisitive and just wants to be around people.  This is one of the greatest things about children in my opinion.   Mitchell attends child care 2 days a week so he can interact and learn a ‘normal’ life, he also attends group sessions with James and other additional needs children so he can learn how to behave in that environment too.

My wife (to be) and I get on with our duties and share as much of the home responsibilities as possible.  I carry on employment and she has taken on the role as carer for our family.  On weekends I will take the children out in the morning so she can have a much needed rest and sleep in.  We really try to support each other as much as we can because to admit this life is easy is unfortunately far from the truth.  Don’t get me wrong, it could be far worse and we are lucky to be in the position we are, but having a strong relationship and family bond is of massive importance to form a stable home life and get through the additional daily chores.

What has been the biggest challenge being a Dad to your child with additional needs?

My biggest struggle as a father has been coming to terms with the fact that I can’t be around as much as I want.  I have to maintain a career and put on a brave face when I get home and realise I’ve missed out on his new milestones.  One other major thing is there is always that part in the back of my mind that reminds me that I will never get to kick a footy with my first born son.  It hits home in a social aspect when all of our mates are running around with their children and you realise that I can’t do that.  It is especially hard in social environments where people don’t know your situation, I find it hard to agree to go to children’s parties as I know other children (around his age bracket) just don’t understand and just don’t sit and play with him so it upsets me because you know as a parent you just want to see your children involved.  We still have a great time and manage our experiences but I look at my son and realise in a couple of years time he is going to be completely aware of his limitations and the mental journey will begin.  That is going to take a lot of strength and that is a future challenge.  But I will be by his side no matter what.

I have been fortunate enough to be able to continue a life where we are involved in the community.  To compliment that I am lucky to have a wife (to be) who is so supportive of our life goals.  She has been incredibly strong and one thing hard to admit as a man and a father is that she has been stronger than me.  It’s been hard to because I have struggled to deal with James’ diagnosis and I guess I’ve just tried to find distraction after distraction, but soon people notice you aren’t ok.  Taking that step and chatting people you never thought you  would talk to, or just noticing that someone has seen you moping around hurts the ego a little.  I’m not blaming my family situation on this, more so the fact that it’s so hard in society to be a man and have delicate problems at home with very minimal social support.  This lead me to my CP fathers page as it’s a place where I feel comfortable talking to others in what I perceive as my shoes.

How do you enjoy time with your son /daughter ie shared interests or activities?

We have tried to maintain a fairly ‘normal’ life.  We have taken our man camping on many occasions and he loves the time away when it happens.  I am involved in motor sport and have tried to maintain that father son let’s go in the shed and build cars.  We sit and learn about tools and just generally play around in the shed, both James and Mitchell seem to love our time.  It really is one of the times I get to feel like a normal dad.  Preparation for these activities is always difficult, but I have got to the point where we make it part of the fun now.

What do you wish outsiders, family, friends or even your spouse understood about your role as dad?
This is very difficult for me to answer.  We have taken a path of publicity with our lives and this has enabled me to share and try and pass on our experiences to try and broaden the minds of others.  To delve into outsiders I guess this isn’t just a special needs parenting problem, but on a recent father son’s trip I had with my boys to a local animal park, I could not believe the amount of looks I was receiving while walking around and chatting to my boys in the stroller, the looks were as if it were ‘oh it must be his weekend with the kids’.  It is also hard in public at meal times as society generally just look in awe at what’s going on.  My CP son is non verbal but has sounds and does enjoy a ‘conversation’ as does everyone else for stimulation.  I remember that it comes from a lack of understanding.

I believe my partner and friends completely understand.  We have been greatly accepted in our friendship circle and our mates always allow us the extra time and space we need on appropriate scenarios.  I believe everyone in our friendship ring has made a conscious effort to show us support in some way.  And I truly believe that has made our road that little easier to traverse.

If you could take your child travelling anywhere (money, time issues are not an issue in this dream) where would you go and why?

I would honestly just take my man on a road trip.  He loves being out in nature and just need that time to explore his surroundings by himself.  I guess it’s more of a comfort choice as when we are away I can just be myself with my man.  I know no one is around to (dare I say) judge us, further to that I feel that time alone really allows me to be a better parent as I don’t have to be conscious of how I treat situations and time constraints.

If you would like to follow along with Travis and James you may like to check out their facebook page here.

Thanks to all the Dads for sharing your experiences with us.  The Cerebral Palsy Fathers Zone Facebook page sounds like a great place for Dads to meet and chat about life with their child with additional needs.

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