Parenting children with special needs, is pretty much like driving to New York from California, blindfolded, with no map or GPS, food or company and hitting every single obstacle in the way. You never quite get to your destination but you keep trying. If the world was flat, we would have probably willingly thrown ourselves off of it. Ha ha. No. Seriously.
There is no parenting manual for children, even less so for a parent of a child with special needs. To add to the dilemma, while some services may cover the Childs needs, we learned very early on, there is absolutely no support for the parents. Nada. Niente. Niks. If you’re lucky enough to have a family close by who could offer the rare time out, most of your time is spent doing the following things: Researching, Advocating, Attending physician/PT/Psychiatrist/Psychologist/IEP/Surgeon/OT/exercise program appointments to driving to and from different activities (not for fun, but because these are essential to help your child move as pain free as possible..) etc. It is a full time job way longer than parenting is meant to be a full time job. And there’s no pay. The pay is watching the progress, albeit so tiny no one else would recognize it, but a cause for celebration all the same.
As parents of small children with physical disabilities and for some way into adulthood, these parents are also feeding/bathing/putting to bed/helping with homework and more physical therapy. Not quite the life we envisioned, but a life we have taken on with considerable enthusiasm and resilience, because we love these amazing children so very much and would readily swap places with them. These children teach us unconditional love, joy, strength, hope and the ability to do hard things and wear big girl panties. Even if they’re ugly.
I am blessed to have a child with mild Cerebral Palsy who is thankfully 100% mentally, but walks with a limp and suffers a blind eye from retinopathy of prematurity. And her twin who has bipolar disorder, a mood disorder that he has learned to live with and constantly tries to stay on top of. The first disability was whispered to us, the second disability hit us like a ton of bricks in the face.
Despite parenting these two, my husband (their stepfather) and I decided their disabilities were not going to define either of them, or us. We had relocated from South Africa to the UK, then to the US, so there is and was no family or support nearby. We had to find a way to make this work without it tearing our marriage or family apart. We decided we needed to live a life that not only took care of their needs, but ours too. We needed goals.
Both of us are athletes, he was a triathlete when I met him, I had been a dancer who morphed into running. I made a big goal of learning to swim because it had been a childhood fear. When I could do that, I signed up for a triathlon, and eventually, an Ironman. This venture not only helped keep my sanity parenting, it also helped me keep a separate identity of who I was and what I was capable of, and best of all, it showed my children that if you are willing to work at anything, you can achieve your dreams. Most of all, it carved out a time all for my own, even at 3 am in the morning before the family woke up. I savored this time. I was a better parent having had it.
I mentor some Mothers on an online forum who are parenting children with mood disorders. These mothers are typically depressed, haggard, stressed, some are overweight, many are dealing with health issues from high cortisol levels to cancer. Most are hating the parenting journey because it has as I quote ‘sucked out all the joy’ out of their lives. They are struggling because they live putting out fires of different sizes everyday, and there are no resources to help them cope with living a life in parallel to their children’s disability. Something needs to change. Support groups become a place to vent with others in similar boats, but rarely to find resources for their own lives.
With my experience in parenting and my career as a trained certified Health and Life Coach, it only made sense that I could fuse these two experiences together and relate to this population of parents and help them! I work with them to create a life that they look forward to, despite the challenges presented to them everyday. Every parent of children with special needs (physical or mental) suffers guilt for taking time for self care, but the reality is that if they don’t take that time, pretty soon their own health will suffer and that is not conducive to a life that exists caring for a child with special needs, sometimes until their old age.
My programs are coached in groups and one on one and focus on underwhelm, not overwhelm in creating healthy new habits that stick, but also, helping parents where they need to find clarity in areas of life that feel so cluttered because it has not been about them.
Best of all, I want parents to fall in love with the parenting process because they are finding ways to enjoy life in every aspect. Who doesn’t want to feel energized as soon as they step out of bed in the morning and carry that vitality throughout the day? Who can live a life without goals and purpose other than throwing another bucket of water on another fire? Parents deserve so much more and I’m one of the best people to help them do that! I’m on that journey, together, with them, not judging them, but helping them see the beauty they carry when they take time for self care.
My mission is to help every special need parent feel amazing! Send them my way! firstname.lastname@example.org for a complimentary consultation!