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

A couple of years ago while I was on a spring vacation, I was reading a book written by Deepak Chopra called Reinventing the Body Resurrecting the Soul. While reading this book, I started to learn the difference between soft and hard energy. As I was learning this, I had a thought, “what an amazing concept to start teaching the families and individuals I work with!” 

At that time, I was also teaching yoga and I could see how practicing yoga organically puts us in a soft energy place. As a result, I began to see for myself the positive mental and physical health benefits of moving away from hard energy and moving closer to soft energy. 

As I describe the differences between these types of energy, I am going to make some suggestions on how to practice moving closer to soft energy so that you can start living your healthiest, happiest life. I want to point out that our modern day environment and media messages about our health are great examples of hard energy.  

The exercise industry tries to convince us that you need to work harder, count every calorie, log every workout, and that gentle forms of exercise are not worth your time because it is not enough of a calorie burn. 

The diet industry also teaches us to use hard focus. There are messages about food restriction and there is an intense focus on weight loss numbers. Not only is the focus only on the numbers on the scales, it has to be quick weight loss to be successful. There is so much pressure and you often don’t feel like you are trying hard enough. 

Do any of these statements sound familiar?  

• ‘Try harder!’
• ‘Eat less.’
• ‘Count your calories.’
• ‘You did well today.’
• ‘You did poorly today.’
• ‘How many miles did you run? Well, that wasn’t very much.’
• ‘How come you didn’t exercise today?’
• ‘Can’t eat that – too many points/calories.’
• “This is a cheat day.”

That is hard energy at work. Many of us have lived by these hard messages for a very long time. You have rules about exercise: it has to happen a certain number of times a week with a certain amount of intensity. You judge yourself harshly if you make a mistake or break your rules. You see your setbacks as failures. Your mind is over worked; you wish you had more control and more willpower. You have a strong negative internal voice that is telling yourself that you are not working hard enough. This leads us to feel bad about ourselves, so then we amp up the hard work, which leads us to getting even more vigilant about our behaviours. 

If this sounds familiar, what I am asking you to do here might be going against many hard-wired messages you have been living your life by. But, when you move to a more soft focus approach to your health, you will transform your life! 

Here Are Some Reasons Why Hard Focus Is Not Helping You Reach Your Health Goals: 

Hard focus leads us to rigid black & white ways of thinking about our health. That in turn makes us feel bad about ourselves and we then create a stress response in the body. Hard focus is an unhealthy, perfectionistic way of trying to walk through the world. It builds negativity, decreases self-esteem, builds stressful thoughts, and drives our stress hormones. When your stress hormones are high, our appetite is harder to manage and this sets us up for unplanned overeating.

Here Is Soft Focus At Work: 

From a health perspective, a more flexible way of thinking will always lead to a more relaxed way of walking through your world. Soft focus calms the mind. It moves us away from feeling guilty and judging ourselves. If you make an error, you wonder about what you can learn from it and move on. You are not judging yourself and telling yourself that you are not good enough. You understand that nobody (or body) is perfect. You are striving for the healthiest version of yourself. You are striving for excellence and not perfection. 

When you are using soft focus, you are kind to yourself. You are exercising because you love how your body feels when you are moving. You love the sense of accomplishment when you are making healthy food choices. You are feeling great about the variety of foods you are eating. You are eating veggies and lean protein because you have the awareness of how amazing your body feels when it is fueled in that way. 

Soft focus allows you to see the amazing health benefits of going for a walk, going for a hike, going skating with a group of friends, swimming in a pond, or going to a yoga class. Soft focus helps you enjoy meal planning, cooking healthy meals, and packing great healthy lunches for you and your family. You are eating healthy because you love yourself and the way your mind and body feels when you are taking great care of yourself. 

Are you ready to transform your life with this energy shift? It takes practice, but I promise you this is a game-changer. Soften your approach and see how it impacts your health. A soft approach doesn’t mean that your health is not important; it helps show you that there are more important things than the number on the scale; it gives you the freedom to enjoy your life. It gives you the opportunity to be active and enjoy great meals with all of the amazing people that you have the privilege of knowing in this life. 

No long-term health improvements have been reached and maintained through a self hate place, you have to love yourself and feel like you are worth this effort and deserve to live your healthiest and happiest life. 

Take Care,

Laurie Pinhorn

Laurie holds a Science Degree in Psychology and Biology from Acadia University in NS, a Social Work Degree from Memorial University in NL, a Masters in Holistic Nutrition from the Edison Institute of Nutrition in Ontario. Laurie is the creator of www.lauriepinhorn.com and co-creator of www.feedingfuturesnutrition.com 

It’s Spring! Let’s Get Out There! 

For over 25 years my academic and professional life as been focused on the needs of children and families.  I have seen many childcare trends come and go, but not many movements have made me as happy as the rebirth of nature-based play.  To think that there had to be a grassroots crusade to bring nature-based play back into the lives of children is fascinating, but that is what happened.  And I think we can agree there is not a more beautiful place in the world for children to experience nature than right here in Newfoundland and Labrador.  Nature is a true educational resource, and we have lots of it – right at our fingertips.

Before I get into the reasons why all our kids need nature-based play, let’s have a closer a look at our latest generation of children.  Today’s kids are in some form of structured group childcare from a very early age, constantly supervised, overscheduled, eat mountains of processed foods, have too many early academic demands, don’t get enough exercise, are often sleep deprived, spend epic hours inside and in front of screens; and this is a big one – are often emotionally dysregulated.

Many of the leading experts are labelling this generation of children as the most anxious and stressed we have ever seen. So how do we help to re-set, or re-boot this generation?

At Feeding Futures we work with families who are struggling to help their very anxious children.  We like to give parents a roadmap of what they can do to try and help their children, and a big part of that map is play, time in nature, increasing family downtime, increasing exercise, and creating opportunities to make true relationship connections.  The glorious thing about nature-based play is that it can help us tick off so many boxes of mental health management – for both children and adults.   My very wise sister, and business partner says, ‘Pharmaceutical companies can’t provide us with a medication, with no side effects, as powerful as a family walk in the woods’.  And I know she is right, we see it in our Feeding Futures families.

So here are some reasons why we love nature-based play:

• Being in nature helps us feel connected. Connected to the earth, air, water, sky, animals, food, and people found in the natural world.  If we want the next generation of humans to care for the future of our planet, children need to be up to their boots in nature – experiencing it often.
• Exposure to Vitamin D. There is lots of research about the connection between Vitamin D and mental health, and all of us living on this beautiful island are deficient in the sunshine vitamin. So get out there and let the sunshine on your face.
• Nature-based play helps organize our senses. If your child has been diagnosed with sensory processing disorder, they need nature-based sensory play, and lots of it.
• Nature-based play helps kids take physical and emotional risks and learn independence. Our kids are told to ‘be careful’ lots – too much.  When you take risks in play, you will become more independent and learn your own limits…not just adpot what people tell you are your limits.
• Stress and anxiety levels decrease as we increase our outdoor physical activity – this is science we can no longer ignore. This is true in kids diagnosed with, and without ADHD.

But I know what some of you are thinking.  That’s great for all you hippies – so now we need to forget about academics and just let kids run wild in the woods all day? When will they learn all the academics they need? I get that thinking, so here are some academic benefits of nature-based play:

• Kids who spend time in nature experience increases in critical thinking, cooperation, and creativity.
• Nature-based play actually adds richness to academics; children can see academic theories in action – in the real world.
• Year-round outdoor play has been shown to increase academic performance, help kids filter out distractions, and increase executive functioning. In other words – these kids are quiet, focused, and alert.

There is science behind the need for nature in our lives. So get out there with your kids – go camping, jump in puddles, go biking, make art with flowers, build snow forts, and let the rain help you re-boot your connections with nature.

Many times a day…..take care,

Lisa Pinhorn

About Lisa – she is Co-Founder of Feeding Futures and Special Needs Mom. 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 Feeding Futures Family Practices and Well-Shops at www.feedingfuturesnutrition.com

 

We are told that the Holiday Season is the most wonderful time of the year and that may be true for some of us. Here is another truth, the Holiday Season can be very challenging for kiddies with Anxiety Disorders, ADHD, Autism, and OCD.

We need to remember that during the Holidays, our kids are dealing with:

• Extra lights
• Smells
• Noises
• Extra social expectations
• Excitement (and social stress) of school concerts
• Many more sugary treats
• Many schedule changes

All of these Holiday expectations can add up to a pretty overwhelming holiday experience. Then there is the biggest of all co-regulating landmines – BIG FAMILY GATHERINGS & DINNERS – These events are full of huge sensory overloads.

To help create a calmer Holiday Season, we are sending you this planning list to help lower anxiety and stress levels:

• Shop online to avoid crowds in the malls
• Say  ‘No’ to some of the party and social expectations – sometimes it is better to stay at home
• Watch your kiddies for signs of anxiety and ask them what they can handle that day
• Keep your sleep, nutrition, and exercise on track
• Try to keep sugar and food colouring as low as possible
• Sleep in and spend some days in your PJ’s
• Play outside
• Think about all the wonderful connecting activities you can do as a family  – baking, singing, go to the swimming pool, make a gingerbread house, etc.

Here are some BIG ones:

• Slow down….dim the lights, turn off your phone, pour some tea and sit by the fire
• Practice breathing, yoga, and mindfulness
• Be grateful – write down the things you are grateful for each day
• Tell people you love them with your actions and words

Remember it is okay to have a slow, family-focused, low anxiety holiday.  It will bring your family closer together and help you set the stage for a successful January.