The Missing Part of Special Needs Parenting.

It is a given – parenting is hard work. But what happens to this already tough job when you are raising a child with complex needs? Physical disabilities, illness, Autism, ADHD, Anxiety, Learning Disabilities, OCD, and Developmental Trauma are parenting game-changers. The level of care and stress load is not just heavier – it shifts the foundations of families and adds unimaginable complexities to everyone connected to these exceptional children.  At Empowered Parents, we live and work in the land of exceptional families, so we know all too well how chaotic days can become when you’re caring for a child who has complex needs.  We also see what this daily stress toll can do to parents.

This exceptional parenting comes with unique stresses – advocating for services, deep financial expectations, unique sibling considerations, and overall relationship issues. These families are dealing with multi-layered complex parenting issues with less time, money, and resources than families raising typical children.  It sounds stressful – because it is, and words don’t give the full picture until you have to live it.

When my child’s Autism diagnosis came, I was also new to the world of single parenting.  My emotional reaction to the diagnosis was not pretty or graceful. Not long after came the realization she also had extreme anxiety and debilitating OCD. The grief that came with each diagnosis was very real – and HARD.  Sadness turned into stuckness within my determined one-track focus on the care of my child.  I was lost in grief and my personal needs held no priority.  During my slow process of adjusting to a new normal, I became a warrior. After 6 years of fighting, I became an exhausted warrior, who needed a new way forward.

This is what I know; the emotions that come with exceptional parenting is nothing anyone expects. It is full of grief, self-doubt, and eventual radical acceptance of your situation – a path that should never be seen as a straight line.

Each new challenge or life phase for my child can stir up old emotions loaded with new stumbling blocks that can send me back into the grief cycle, which is full of negative thought loops and less than ideal coping strategies. What I eventually learned is this –  I was the only person who was going to be able to lighten this stress load, no one else was going to do it for me. And that I had to make a plan, after all, I have a vulnerable child who needs a fully present parent.

A New Special Needs Normal – Family-Focused Care

In my private work with families, I see special needs parents scrambling within their new and unexpected role as a health care case manager for their children. They are positioned to be the catalyst needed to provide an overall quality of life within their families, but many are never told how to do this from a balanced, compassionate approach. Sadly, families receive little support on how to best meet the needs of their children without feeding the already toxic levels of extreme family stress.  The stress within special needs households is a topic we can no longer ignore.

So here is what I know to be missing in our special needs world – Parental Self-Care….and
not normal self-care; we need deep, even radical self-compassion practices.  We are all so concerned about the deficits of our children that no one is looking at the emotional crisis happening in the lives of the parents and overall family. The day you get a diagnosis, the doctor doesn’t take the time to explain how stress impacts us and the people around us.  At Empowered Parents, we tell parents it is time to add themselves on the family care list….parents actually need to be number one on the care list, but I know that is impossible for special needs parents.  So, if our self-care needs can’t sit at the head of the family care table, we at least need a seat.

Here is what we want parents to think about – imagine back to the day the diagnosis came. Were you told to get ready for the grief, recognize your personal stress levels, and strengthen your family relationships as part of your child’s care? Or did you start down the road of driving your child to one specialist after another and line up for pharmaceuticals? These are two very different approaches on many levels – one is void of parental self-care while the other puts parental self-compassion as a necessary part of family-focused care.  Sounds radical, even though it shouldn’t be. At Empowered Parents we want parental self-care to be part of the new normal that comes with the special needs diagnosis – and here is why.

The Harsh Reality – Caregiver Stress Load Impacts Children

So here is the depth of this harsh reality. We are parenting in the age of ‘Generation Stress’.  We are stressed, schools are stressed, and our kids are stressed (and this daily stress is amplified when we are parenting complex kids).  Our bodies and brains are in overdrive all day, each day – and it all flows down into the lives of our children.  We have years of research to back this up and ignoring the connected web of stress we all experience each day has dramatically impacted all our children.

Hold on, because here comes the missing pieces that are big game changers.  It will turn your world upside down….but in a good way.  This message is sometimes hard for parents to hear –  but here it is.

Our children are our mirrors, in their behaviour, they show us our stress levels.  Each stressful adult day seeps into the nervous system of our children, and they reflect it back to us.  Whenever we see a rise in anxiety and stress behaviours in our children we need to take a good look at our day-to-day lives and our parenting stress levels.

It is hard to sometimes see ourselves as contributing to our children’s challenging behaviours, but the good thing is that it is never too late to make changes and adopt a softer more compassionate approach.  There are so many areas of science telling us this is the way forward for all families – and special needs families need to find a seat at the self-compassion, relationship building table too.

The 10% Self-Compassion Promise

Parents of exceptional children need more than run if the mill self-care practice, they need supercharged, Exceptional and Radical Self-Compassion. I tell parents to imagine they won the Self-Care Lottery and they had to use the money on taking better care of themselves or they would lose the prize.  Everything about our lives is filled with exceptionalities, and this part of our lives needs to be too.

In my private work, I ask families to think how their lives would change if they took 10% of the love and energy they donated each day to their exceptional child and gave it back to themselves. Many say they can’t, that it would be selfish, that there is no time. It is natural that special needs parents are super focused on their children, they have to be.  But they also need to care for themselves to avoid the downhill flow of anxiety into their already compromised children. When I remind them of how interconnected stress is within families, they begin to think a little more about a yoga class or going for that swim.

 

Here are a few things special needs parents can try as they step into the world of Exceptional Self-Care and Compassion:

1. Become a Peaceful Warrior.

This type of parenting requires us to fight – so we go at it from the position of a warrior.  But what if we come at this type of parenting from a different direction?  One where instead of burning through our energy supply like an aggressive warrior, we pause each day and fill our tanks with exceptional compassion towards ourselves. Tell yourself each day that you are doing the job of giants and that you are doing it well. This I know to be true, I have lived it – you can only be a warrior for so long, then you crash – and no one wins.

2. ‘Self-Care Light’ Just Doesn’t Cut It

I love spas. I love the music, the muted colours on the walls, all the clean food, water everywhere, and the special services are wonderful.  It is a delightful experience, but in my opinion, it is ‘self-care light’.  Like all powerful experiences, we have to go deeper to see changes in our thinking, feeling and behaviours.  Sadly, it has taken years for me to figure out this basic fact – leaving the spa and going back into the beehive of a stressful house, busy job, or an over-thinking-perfection-orientated-wonder-woman-brain is not what I call wise. These days I will keep my hundred dollars of spa money for a yoga or meditation class.

3.Learn More About Self-Compassion

Recently, I have taken on a more significant and more in-depth practice of self-compassion.  Self-compassion goes deeper than thinking it is nice to buy yourself that expensive trinket because you deserve it. It is a deeper daily practice where you learn how necessary it is to cultivate a kind voice in your head.  This voice will get you through the dark days, the medical appointments, the IEP meetings, and whatever your exceptional life will toss at you.  Self-compassion lives within a soft spot within yourself. It provides you with much needed kind attention, and it is the balance to all the attention you have to give to others.

4. Know That Compassion Has Two Necessary Parts

We remind people that compassion has two parts; two equally important parts – the part we give to others and the piece you must give back to yourself.  Our families have no issue with the first part; it is the second part they can’t get their head around. They have never been taught how to care for themselves or even think it is necessary.  But it is, and this is the foundation of helping our children with special needs feel better too.

5. Consciously Invite Positives Into Your Life

A wise yoga teacher once taught me the power of inviting positives and joys into our lives, and the reason to do it is more profound than you think. This practice teaches us that when our lives become more positive and balanced, we can reflect and observe that negatives have drifted away or at least don’t take up as much space in our lives.  Try it for a month, see how your life changes and how the behaviour of your children will change too. Positive begets positive, and joy generates joy, so pause to celebrate the positives, no matter how small they might appear. Harvest joyful experiences and sit in them when they happen – it will change how you see the world because it actually changes your brain.

So, are you ready? Ready to try something that will benefit your whole family?  Here are some guiding points. Start small. Make a list of some things you would like to do for yourself, carve out some time to do it then see what happens. This thinking is not selfish – it is necessary.

Many times a day…Take Care,

Lisa Pinhorn

About Lisa – she is a co-founder of Empowered Parents and a fierce advocate for neurodiverse family culture. Lisa is a firm believer that empowered parents, holistic care, and empathic relationships are powerful, and often missing pieces of pediatric interventions and care. She knows firsthand the challenges of parenting a child on the autism spectrum.  Check our Family Practices and Workshops at http://www.empoweredparentservices.com