General

This is actually a common issue for mothers of children with special needs. Even though moms may be home full-time to provide all the caregiving, it can soon become evident that the responsibilities are immense. Partners don’t always realize this, and it can be difficult to make them understand regardless. What if I told you that your efforts are better spent on bartering for what you need, by using your partner’s values as currency? 

To play the devil’s advocate, until you walk a mile in someone’s shoes, you cannot fully grasp what the other person is feeling and experiencing. As a matter of fact, even if you did walk a mile in their shoes, (even 1000 miles), chances are you will experience things differently because you are a separate individual with your own past history, and your own life experiences, but most of all, with your own set of values. 

Values are things we judge as being the most important to us. They are usually ingrained and uncompromisable. Although partners are likely to share a basic common value system, we all have our own hierarchy of priorities, as well as our very own personal values. These can be in the form of a favourite pastime, hobby, job, sport, social activities, or even time alone. Our values guide our relationships, determine our financial priorities, and control how we spend our time. They are a big deal, and knowing your partner’s top 3 values can be very helpful. 

If you have already taken the time to communicate assertively with your partner but still feel a lack of insight on their part, then try stating clearly what you need in exchange for your partner to get, (but more so usually keep), something they truly value. Stick to the facts, remove all emotion, and propose a solution based on values. 

Here are some examples:

“I’ve been lacking restful sleep this month. I know you love your early hockey games on Tuesday and Friday mornings before work, and I would hate to have to ask you to skip them, but if I can’t get all my evenings off and rest properly, I might need you to take over some mornings to do drop-off. But if you can manage to take Sally to her gymnastics classes on Monday and Thursday evenings from now on, it won’t be a problem. I will get to rest and you can continue to play hockey. Does this sound feasible? ” 

“I am trying to problem-solve around how we can simplify our schedule so you can continue doing your office paperwork on Saturday mornings. I was thinking…I need to be the main person overseeing all the educational and therapeutic stuff because I am at home, but if you could be the main person in charge of the medical appointments, that would free up a lot of my time to do the other home tasks and chores, and I could then take Johnny out on Saturday mornings so you can do your paperwork uninterrupted. “ 

“I know you want to save a certain amount of money this year, and I am trying to figure out how we can budget so we can try that new private treatment only offered in the USA. I would be content to spend our Spring Break skiing locally for a few days, instead of our usual all-inclusive holiday. I think giving Steve all possible opportunities to progress, and saving money is more important.” 

I hope this helps all you dedicated mommas out there by giving you another strategy to try when you are frustrated.  I truly believe that everyone is doing their best when it comes to raising a child with special needs, including partners. But don’t forget… there’s a reason why we say men are from Mars and women are from Venus. 

Use values as currency and see if it gets you closer to what you need. Sometimes, we also need to work on how we are coming across in our non-verbal body language. In my equine-assisted self-help therapy, I do some work with values, and also communication, by using the feedback provided by the horses. I would love to help…

#1 Don’t spend enough time just being a mom

Trust me. I know how it is (and I have been guilty of it myself). You get so wrapped up in wanting to provide your child with the best outcomes, that you put on your therapist hat for every waking moment (when you’re not wearing your taxi driver hat). I know I don’t have to tell you why it is important to reach a balance between being a “therapist” and being a mom, but I do want to bring attention to the heavy guilt we moms carry if we are not using every spare second for programming. 

Before I had children and was working as a pediatric Occupational Therapist full-time, I had no clue of the intense sense of emergency parents felt with regard to carrying out my recommendations to a T. Now that I have been a parent on the receiving end, I wish I would have put equal value on recommending that moms share quality time in pure joy, without any expectations or goals, other than connecting in love with their child. 

Our children need to feel that they are loved for simply existing and that we cherish their presence in our lives. I am giving you permission, (no, urging you actually), to indulge in nothingness together!

#2 Don’t get the right type of respite

I’m sorry, but taking a bubble bath, watching Netflix (at ungodly hours), folding laundry uninterrupted, watering your garden, or even going to the gym 3 times a week, does not constitute proper respite for the intense life we moms of children with special needs lead. Sure, all these things provide much-needed relief throughout the long days, and it certainly can be argued that it is better than nothing, but our nervous system requires way more time to recuperate and reset. 

Take advantage of those funded respite hours and schedule regular overnights away. It may sound excessive, but it is ideal to rest for 12 hours once every 2 weeks, and a full 24 hours-48 hours once a month to every 6 weeks, depending on the severity of our child’s needs. If you think I’m crazy, then read on to mistake #3.

#3 Minimize your risk for depression

Being exhausted and feeling numb is pretty much the standard for moms of children with special needs. It becomes so “normal” that we almost expect it and don’t notice the subtle and gradual changes in our health, and worsening of symptoms with our moods, (if and when they occur). 

Don’t think yourself immune! All moms of children with special needs are at a higher risk for depression. You can’t afford to notice if you are slipping Do you have a way to monitor yourself? Do you have a plan in place in case you do? If not, get on that pronto!

#4 Think that your child’s social time isn’t as important as therapy time

Just like adults, children measure their quality of life by the quality of their relationships. Their soul happiness depends on it and this should never be underestimated. 

If you think that your aides, teachers, and therapists count as your child’s friends, (as well as social time), you are mistaken. It is imperative that you incorporate plenty of authentic relationship-building time with peers that have the potential to be real friends. It might require searching for resources like a playdate or social mediator, but it is well worth the effort. 

#5 Take your other children’s smaller accomplishments for granted

Siblings of children with special needs are among some of the sweetest, most well-adjusted, sensitive beings you will ever meet. There are many reasons for this, including that they have had to learn the importance of thinking of others earlier than their peers, thus speeding up their maturity.  But sometimes it’s at a cost…

Like many other parents, we used rewards as incentives for our child’s cooperation in therapies, amongst other things. When my middle daughter was 5, she asked “mommy, I do everything right, but I never get a prize. Are you not proud of me?” This broke my heart, especially since I had always made a conscious effort to split my time equally between my children. 

Studies show that siblings of children with special needs can sometimes grow up to be people-pleasers at the expense of their own needs. It is also possible to see them develop a tendency to be hard on themselves. My advice is to express your love and appreciation by removing the need for praise to be related to a performance outcome. For example, instead of saying “I am so proud of you for how well you played the piano at your recital”, try saying, “it fills me with joy to see you so happy doing something you love! I feel so lucky to be your mom and to share this moment with you! Let’s go have ice cream!”

#6 Neglect to actively nurture your soul

Although it often feels all-encompassing, being a mom of a child with special needs is not all that we are! Sure, caregiving can be quite rewarding at times, however, it is of uttermost importance to keep in touch with the unique and separate parts of yourself that make you feel genuinely connected to life. Without that essential personal soulful connection, it will prove very challenging, if not impossible to maintain your caregiving stamina without seriously increasing your risk for burnout. 

If you have lost your connection, or have forgotten what it is that feeds your soul, I urge you to work on getting your horsepower back! If not for yourself, then for your child. Not thinking of yourself in this case, can be selfish.

I can help…

How does she do it?

When I meet new people, especially other moms of children with special needs, they are often taken aback by how much I have advocated for my daughter and how much I have accomplished in my own life. I often get asked how I manage to do it all and what keeps me going. Well, let me tell you my secret…

I’m a kook

I am slightly kooky. I know it and admit it openly. In fact, I celebrate it!  My best friend affectionately calls me her “kook”. If I did not indulge in this side of myself, I would most likely be insane. Being kooky keeps me strong! It is the deep well from where I source my stamina for staying in love with life throughout the most challenging times. I need to pull from this reservoir to fulfill all my roles and responsibilities, including raising my daughter with special needs. 

So what makes me kooky?  Well, it is a fact that I have chosen to believe in the magic of life. I have chosen to actively seek to connect with all that surrounds me in a deeply meaningful way. I look for meaning. I create meaning. I explore ways to feel alive on a daily basis! My beliefs might seem out there to some (ok, most), but they shape my values and contribute to my happiness!

My personal brand of kookiness

I love horses (in case you haven’t noticed) and feel they communicate directly with me by mirroring my truths and teaching me important lessons in so many different ways. I have dreams at night that are often prophecies of realities that eventually occur in my real life. I believe that my angels and spirit guides give me all sorts of signs. I feel connected to the universe during my yoga classes, and feel a great sense of purpose when I help others help themselves. There is so much more, but I think you might be getting the idea of how rejuvenating it all is for me! 

Start filling up your own well

I encourage you to start thinking about how to fill up your soul reservoir, especially if you are at a loss to reconnect with your sense of vitality. Often, moms of children with special needs can become numb over the years and struggle to feel anything at all. If you are wondering how one goes about doing this, start by identifying your soulful type. If you don’t know what it is, you can start by further exploring what you suspect makes you tick. 

5 ways to connect to your soulful side

There are lots of different theories about this topic, but I have categorized 5 main ways people connect to the magic of life. Some people can dabble in all 5, while others stick to only one. It depends on your personality and soul archetype (a whole other blog topic).

1. Nature

If you love the great outdoors and all it has to offer, this may be your thing! If being in the presence of animals, caring for plants, and/or helping environmental causes makes you feel part of something bigger than yourself, then this may be your ticket into connecting to the magic of life!

2. The physical body

Some people need to get out of their heads to clear their thoughts and tap into their bodies to be fully present.  Examples include those who find exercise essential, enjoy a satisfying yoga practice, and/or feel alive when playing a sport they love. You can totally reach new levels of soulfulness by taking your physicality to a new level!

3. Sensuality

Many of us can experience soulful connections through pleasurable yet intense stimulation from our senses. Music, art, food, dance, meditation, and physical intimacy are all part of this type of way to connect to your higher self! 

4. Social/emotional experiences and interactions

If you are the type of person who feels uplifted after spending time with your friends and loved ones, helping others through difficult times, or participating in humanitarian causes, it is possible that you can achieve greater soulful connections to life through social/emotional interactions!  

5. Religion

This one speaks for itself! I would, however, encourage you to try to connect to one of the other methods to truly go even deeper by developing your own connection to yourself! 

Teach your child about soulfulness

How can you teach your child with special needs ways to find true meaning and joy as they forge their way in life if you do not have sustainable strategies that work for you? Being a model for spiritual resourcefulness and soul resiliency is your best way to show your child that your perspective and beliefs directly influence your level of happiness. 

Hurry up and get on the kooky train! It’s way more fun up here, anyways! You have nothing to lose but your insanity. 

We all know that life happens. The past year, however, was perhaps the most trying time in my life as of yet. So when I finally resurfaced from the depths of the dark turbulent waters, I made a humbling observation…I can definitely work on taking my own advice…

When you are trained in health and wellness, there can be a certain assumption that you always have it together. The truth in the matter is that Practitioners can often be hardest on themselves. It is not uncommon to think,  “ I got this”, “I teach this stuff”, or “I will be fine”. Perhaps this is true when it comes to sweating the small stuff; however, this time around, I’ve learned the harder way that when the going gets REALLY tough, it is important to practice what I preach.

In the thick of the storm, if you want to prevent a more serious crisis from developing, there are really no other options other than to STOP, LOOK, and LISTEN.

STOP

 Stop immediately doing anything that seems to be adding to your stress. This is not the time to judge yourself for not being the parent of the year, the all-star spouse, the selfless friend, or the employee of the month. It is the exact moment you need to give yourself permission to focus on yourself to preserve your wellness and avoid further overwhelming your mind, body, and soul. It is also not helpful to downplay the urgency of the matter by entering a state of denial or reinforcing the false belief that all will fall apart if you can’t be present in your life at the moment. (Trust me, I know how damaging this can be from experience). Recognize your “downward spiraling” signs and respect them. It is easier said than done, but it is absolutely mandatory. Stop and act!

LOOK

 Look for support, resources, and hands-on help. Having a crisis plan is always something I recommend creating when things are calm in your life. It becomes a useful guide listing a variety of things capable of getting you through the worst of the emotional upset, especially when you think nothing will help. (And trust me, in that state, you always feel nothing will help). Examples include contacts for your favourite helpful professionals (such as counsellors, physicians, spiritual teachers), domestic and everyday help (hired or friends/family you trust), social activities (favourite things to do), locations (favourite places, classes, or free support groups), soulful routines (journaling, affirmations, expressive arts), etc… Force yourself to do it all!

LISTEN 

Listen to your body and your inner voice, and shut out any unfitting advice or negative self-talk. Trust your gut as to what you need at the moment without judgment from yourself and others. Affirm your needs clearly, delegate tasks, and reinforce your boundaries, even though it might not be convenient for your family, will upset their routine, or risk hurting their feelings. Nobody knows how you are feeling, the circumstances of your life, and your personal wellness needs more than you. Take all the time you need. There are no time limits on how you should be doing at a certain given time.

You can’t afford to risk losing yourself. That matters most. No one said it was going to be easy, but really, it’s as simple as that.

A while ago, I had the privilege of working with a unique little girl in grade 1. She had a pleasant but quiet personality, was painfully shy, and had developed a pattern of selective mutism at school. This little girl had an older sibling with moderate-severe special needs and significant behavioural issues that often disrupted life for everyone at home. Upon further investigation, it was suspected that this little girl’s selective mutism, was likely related to her difficulty coping with stressful life circumstances at home. Although she was successful academically, it became apparent that she needed support to help her make sense of her emotions, as well as strategies to her thrive socially. Parents had tried traditional therapy, but nothing seemed effective. That’s when they reached out to me.

When I first met this little girl, I could tell she possessed a certain maturity and emotional intelligence, which surpassed her chronological age. I had observed this before in children with selective mutism, which had presented to me as an admirable inner strength. Although she was immediately able to speak with me at our first meeting, it became obvious that she had adopted the role of the “pleaser”, and that it would require thinking outside the box to help her tackle her issues. While she answered questions politely, she did not share beyond what was being directly asked of her, regardless of how interesting and fun the activity was. This was a concern, as I suspected it reflected her tendency to cope by bottling up her feelings. Intervention for her would require a comprehensive biopsychosocial approach to address core issues at the family systems level, support strategies for the teachers, and one on one sessions with the little girl in order to help her find her own unique voice. As a first step, in order to break down those thick walls I suspected she had built around her sensitive heart, it was going to require some serious horsepower. So what did I do? I brought in the horses.

When we first entered the pasture, the little girl’s eyes gleamed with pure excitement and awe at seeing the herd. She had been around horses before but had never been invited to simply walk freely amongst a group of horses. This particular domestic herd, (which was by no means natural and wild), was a mix of geldings, mares, and pregnant mares. It did not surprise me one bit that the horses were immediately drawn to her beautiful energy. What happened next, however, was truly magical.

The pregnant mares proceeded to surround the little girl in a sort of motherly circle of protection and comfort. The rest of the herd seemed to understand the intentions of these pregnant mares and kept a respectful distance in acknowledgment that this little girl had become their charge. The leader of the pregnant mares, moved towards the little girl, positioned herself directly in front of her, and began breathing rhythmically over her head. The girl understood that she needed to remain still. Instinctively, both girl and horse closed their eyes and seemed to follow a synchronized breathing pattern, which took on a peaceful meditative quality. The other mares appeared to simply be holding space for both human and horse. They remained still like this for a good 20 minutes. You could practically feel the energy slowly chipping away at the walls surrounding the little girl’s heart. Parents told me that the little girl slept all the way home in the car. The emotional effects of this initial visit with the horses proved to be groundbreaking in her journey toward wellness.

Following the experience with the pregnant mares, the little girl asked immediately with enthusiasm when we could do this again. She begged her parents to allow her to continue her visits with the horses. These visits provided a powerful platform for engaging the little girl in her own unique therapeutic process. As our sessions progressed, we were able to benefit from the profoundly grounding and centering shared experiences with the horses, to tackle the core underlying issues surrounding her selective mutism.

These experiences began to serve as a type of emotional warm-up (catalyst?) for the little girl, where she began to feel increasingly willing to engage in self-reflection and free expression. After each session, with the horses, we would follow up with creative self-expressive mediums, (mostly arts), to visually reflect new-found awareness around relevant themes such as confidence, worthiness, safety, roles, and relationships. We made a point of being outdoors as much as possible for this part, in hopes to instill a sense of natural discovery, and an awareness of being part of something much larger than ourselves (and our problems). We used materials from nature to make beautiful things, and her parents commented on how the little girl looked forward to her sessions, which had not been the case with previous interventions they had tried. It was clear that soulful interventions “from the outside-in”, were having a positive effect on helping this little girl in more ways than one.

It is well documented in the scientific literature that we are all somewhat “nature-deficient”, just by the very way we are forced to adopt certain lifestyles due to jobs, and other circumstances. We now know, however, that spending meaningful time in nature, can alleviate stress, and anxiety, as well as improve our moods, and our overall sense of well-being. The key here, however, is to make sure that the experiences in nature spent interacting with the environment, reach you on a soul level in order for them to be truly effective. In fact, research suggests that when any health issue is addressed by incorporating the person’s sense of spirituality or soulful beliefs, they are more successful at making lasting changes that are still relevant over time.

It was only after this carefully orchestrated process, which began with the help of the horses, done at the little girl’s own pace, that we were able to lay the foundation for introducing coping strategies, and for those strategies to be well-received by the little girl. It was important to introduce individualized strategies developed to work specifically for her, and only her. Rushing the process would have been counter-productive, as we can only help ourselves when we are emotionally and spiritually ready, despite the fact that we might already have the knowledge to do so, and are presented with the best-proven programs out there. It was with great relief that the parents began to observe their daughter applying her coping strategies in her life with success.

As suspected, the little girl had been in emotional shutdown from the unavoidable stress at home, which became magnified in highly sensory stimulating environments (like a noisy and busy classroom). The anticipatory anxiety of being stuck in these situations in turn compromised her ability to navigate social situations, by leading her to resort to using the protective mechanism of staying quiet. Although her parents were doing everything right, they lived with the guilt of not being able to fix everything. The fact was that their family life was intense. It was revealed that the little girl inherently knew this, and unconsciously tried to ease the chronically strenuous load off her parents by playing the role of the “easy” child, and becoming almost invisible.

Progress did not happen overnight, and was not restricted to my intervention. True to the biopsychosocial approach, it required a team effort in all environments of the child’s life. Besides requiring “horsepower”, it took 3 months to see the results of our work together, and we could not have reached any of our goals without the strong support and participation from all family members and teachers. We all helped this beautiful soul to find the self-esteem to forge a healthy, distinct, and unique identity for all her valued life roles (daughter, sister, student, friend). By mid-year, she was no longer mute at school.

It is important to accept the fact that some families live unavoidable, chronically stressful lives, despite the fact that they might be doing all the right things to assure everyone’s well-being. Having a family member with robust special needs is a prime example of such a situation. While working with this family, it was not possible to change difficult life circumstances (that naturally come with living with a sibling with special needs), but we managed to teach a child the importance of tending to their own wellness, in a way that was pleasant, meaningful, and easy to apply in their lives. In this case, I believe we have the horses to thank for that.