About the Author
Several weeks ago, an author approached me via email and asked if I would like to read his book. He is a husband and father that just happens to have CP. I read the book – some parts twice! He has a good outlook on life and a great sense of humor.
I would like you to get to know him better, before reading his book Daddy Bent-Legs
My Interview with Neil Matheson
1. From your perspective, what is the most difficult aspect of being a husband and father with cerebral palsy?
I would say that hardest thing for me starting out was just trying to figure out where I best “fit” in the beginning – what my exact role was, and how I could best help out. Some of that is disability related, but a big part of it is just the fact of being a guy, I think. Women have a distinct advantage & head-start on the whole parent/child bond thing most definitely. And yes, I had to figure out how hard I could push my body physically while trying to find out what I could and couldn’t do … but, even so, a lot of it was just getting used to the idea of being a father and what that should all look like for me.
1 a) Of course, my cerebral palsy makes me a fair bit slower too – slower to move, slower to react, and more limited physically in general. All of the small things that able-bodied parents take for granted like the ability to run after, scoop up & carry a child (whenever, wherever and however). In truth, it’s all of those very small, simplest things that are the hardest to deal with by far. Holding hands with my son while walking? I can’t do it, my crutches get in the way.
2. Do you or your wife drive a vehicle that has been modified for your needs?
Although I did try to learn as a teenager, I never became comfortable with driving – my wife didn’t learn also. We used to own a wheelchair-accessible van (that my wife’s care-aids would drive for us) but it eventually got far too expensive to repair and maintain, so we now depend on public transit exclusively. Fact: having a disability (…with aids and accessible vans etc etc) is very expensive!
3. Do you live independently, as a family, or do you have help that comes in to take care of certain aspects of daily living, or help with your son?
We are able to live relatively independently. For the last seven years, Elana & I have lived in a condo that we pay the mortgage each month, and we are able to go out by ourselves as a family for trips to the grocery store, a restaurant or park. My wife Elana has Arthrogryposis and is confined to a motorized wheelchair and she has always required the help of 24/7 care-aids. They also help with our 3 year-old son, but we both take our roles as parents very seriously and take on as much of the parenting side of things as we can on our own.
4. What special aids or precautions do you have to take, to insure that you can keep up with your son and keep him safe? (i.e. baby gates, harness leash, cupboard locks, etc)
When Jake was a baby, Elana had a custom-designed baby carrier that attached directly to the front of her wheelchair. She also used a sling. As well, I will often use a scooter instead of crutches so that I can have Jake sit on my lap and have more control over him. I’ve never been a fan of leashes for children, though I know they serve a need for some people. From the start, Elana & I have always focused on establishing clear boundaries with Jake and his need to listen to us, and trust us, as his parents. Again, we started on this early (as a high-priority item) to ensure Jake’s safety at all times – and without question, cultivating Jake’s self-confidence, independence, helpfulness and trust has paid huge dividends. As far as ensuring a baby-safe home, that just seems to happen slowly and naturally over time all on its own. Babies are born helpless and don’t move around much (… or get themselves into unsafe situations) that whole first year. As a brand new parent when Jake was first born, I remember thinking how we needed to do so much changes and stuff to the house to get ready for a baby – but, in reality, you don’t. Soft, durable & easy to clean leather furniture gets a strong recommendation from me, though.
5. Do you both still work outside the home?
Elana & I both used to work at full-time jobs – Elana as an elementary school teacher, and me as a computer/technical support analyst. Shortly after Jake was born, I was laid-off and haven’t returned to work since – while Elana has scaled back her time at school to 1 1/2 days per week. The fact is, parenting is a lot of work – for anybody. Throw a couple of significant physical disabilities into the mix, and it can wear you down in a big hurry. For me, saving as much of my physical energy for Jake and Elana is most important. As things stand right now, I’m in no hurry to return to work at all and hope to eventually earn more money through my writing or photography and working from home.
6. What precautions do you take, in the event of emergency? (i.e. wear your cell phone, have an alert bracelet, etc.)
In emergencies, Elana & I both have cell phones, and a care-aid is usually with us or nearby. Elana has a rotating staff / schedule of 24/7 care-aids and for nighttime hours, we have a spare bedroom where the care-aid on duty can have her own personal space and sleep.
7. Does your family have a good support system?
Elana & I both have very supportive and helpful parents. They are all getting older though, so it is important that we can carry on ourselves with as much independence as possible (with help from Elana’s care-aids, of course).
8. What advice would you give to any disabled individual contemplating marriage and family, either with an able/disabled spouse?
My advice: Don’t let impracticalities and challenges of a disability dissuade you from going after what you really want. Everybody deserves a chance at happiness – and, in the end, love doesn’t care about impracticalities and disability. Real love happens in spite of impracticality.
9. What is your favorite thing to do as a family?
Jake is incredibly active and energetic, so Elana & I like to take him out for walks or to a park where he can run around and kick or throw a ball. We also enroll our son in different toddler sports / dance classes at our local community centre throughout the year. For me, any family time is fun. Even trips to the grocery store are fun when done together as a family.
10. What/who encouraged you to write Daddy Bent-Legs?
I first came up with the idea of writing a humorous, lighthearted memoir over twenty years ago. My whole life, I have always used humor to attract people’s attention, and I had never seen a book focused on life with disability that was more casual and funny. For me, it’s important everybody know that living with a disability – while sometimes challenging – is not all bad, awful or full of pity. Humor has always been my hook – a way of coping with my disability – and I wanted my book to reflect that. I worked on my book (and several different revisions) for a long time. I’d bring out my manuscript, tinker with it a bit, and then put it away again for another couple of years. Every two or three years, I’d tweak it a bit more – but it never felt finished. It wasn’t until the birth of my son that I felt I had a complete story. I started writing again in the summer of 2009 and it only took me two months to cobble together a full, finished book.
11. Do you plan on writing another book in the near future?
If I do end up writing another book, I don’t want to rush it. If it takes me another 20 years, so be it! In the meantime, I’m still busy trying to market Daddy Bent-Legs and I have been enjoying writing blog posts on my website about disabled parenting.
12. What would you like people to know about you, your family, or your book that I forgot to ask?
I love getting feedback from readers of my book and blog. I hope to continue to grow a loyal mass of followers on the web, I appreciate the support, and I still have even bigger plans for my book in the future…
I want to thank Neil for his very candid answers to personal questions. Many of my questions were based on similar inquiries regarding my own challenges with CP. It was nice to get the perspective of a loving husband and father who lives with like challenges and also loves someone with even greater struggles.
Please follow the links and check out his equally candid, funny, serious, and loving book. I wish him and his family success and continued happiness.
Cerebral palsy (CP) is a common congenital disorder that impacts muscle tone, movement and fine motor skills, including writing, balancing and walking. CP can even lead to other health complications, such as vision, hearing and speech issues, as well as learning disabilities. According to 
My friend called her husband. He came and pulled the fuse for the ignition switch, which effectively shut down the engine. Then, he had to discombobulate the battery, so that the lights would shut off. While he was working on getting the car shut off, we went into the movie.
As days go . . . I couldn’t have asked for a better one. I still have both my kids at home for one more day, and we got to surprise my mother.
