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Helping moms of children with special needs get their horsepower back!

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Blog

January 28, 2019 by mariannedisipio

Soaring beyond therapy

I am often asked when is it ok to stop all intensive therapies with your child with lifelong special needs. When my daughter with mild-moderate special needs turned 10, my husband and I decided it was time to stop all therapies. Here is why….

Our decision was not an easy one to make. In fact, it was perhaps THE hardest one with regard to her development. Truthfully, leading up to this decision, we lived with overwhelming feelings of doubt and guilt, but something deep inside kept encouraging us to trust our intuition.

And so began a new mourning process on this life-long journey with our daughter, towards acceptance of things we cannot fully change or control. This is a truth so often faced by families with a unique child confronted with lifelong limitations. But, we are happy to say that it was the best decision for our little girl!

Although every child and situation is different, it is my opinion as a professional and mother, that there comes a time in these types of chronic situations when you need to reassess the wellness priorities for your child with lifelong issues and focus your energies on maximizing quality of life through soulful experiences. We hope our story offers a helpful perspective in making such a personal decision.

From the time our daughter was 19 months old, we had worked very hard to assuring that she had the best comprehensive program in place, which would maximize her developmental growth and learning potential. Like many other parents in our position, we did extensive research, consulted with world experts in all fields, did all possible testing, participated in specialized programs, did traditional interventions, tried promising alternative methods, created resources in our city, etc…Our world quickly became bombarded with numerous daily appointments, which led me to take extended maternity leave to act as her case manager and fulfill our grueling scheduling demands. Having been a practicing Occupational Therapist in child development for years, no one understood better than me the sacrifice required by parents to give a child like ours the best possible start in life. We did it intensely, full-time, for 10 years. We made it work through personal and financial sacrifices and would do it all over again if given the choice.

It all changed when we became so shockingly aware that the extent of the efforts put in by all the professionals involved, including our daughter’s efforts in meeting therapeutic goals, became clearly disproportionate to her slowing rate of progress(if there was any progress at all). It is at this key moment that we knew it was time to change our game plan.

As this began to happen, we simultaneously became incredibly aware of the fact that our daughter was struggling to find more meaningful and satisfying ways to spend her time. Furthermore, she had entered a critical period in her social/emotional development where one needs to forge a personal identity based on a healthy self-concept, achieved through experiences offering independent success. Rehabilitative, remedial, and compensatory therapies were no longer appropriate for helping our daughter achieve this essential milestone. The time had come to graciously change directions.

Throughout this entire process, we often questioned if we were giving up on our daughter, regardless of the fact that we had her professional team’s support. We quickly came to the realization that we were actually encouraging her to give herself permission to be proud of how far she had come, to accept herself as whole (just as she is), as well as offering her the opportunity to join the rest of us in a full, well-balanced life. The switch in our mindset and direction was truly transformational for our daughter!

By focusing more on filling her precious time with opportunities to feed her soul, our daughter found herself growing in all sorts of new directions in her life. Directions we never dreamed of or even thought possible! Directions we could not have reached through the previous approach. We observed her feeling genuinely proud of her new accomplishments, grateful for her personal strengths, and appreciative for the good things in her life.

The biggest gift to us was that we could finally enjoy just being her parents, as opposed to needing to also act as case managers, therapy assistants, and teachers. What a joy to see her finally bloom into the perfect version of herself, happy in her own skin, living personally satisfying experiences, and enjoying meaningful relationships!

Health is not limited to the body and mind. In fact, it is difficult to reach a true state of health without a happy soul. Our message to parents who might be thinking about changing their direction with their own unique child with chronic special needs (plateauing in most traditional areas), is to never keep this truth out of sight. In the end, all parents truly want for their children is their happiness…  

Filed Under: Blog, Newsletter

January 9, 2019 by marianne

Advice to myself…

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.

Filed Under: Blog, General

November 7, 2018 by marianne

Finding a Voice

girl hugging horse

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.

Filed Under: Blog, General

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Marianne Disipio, B.Sc. O.T., C.W.C., EASLC Reg. CA

info@mariannedisipio.com
403-828-0242

25013 Township Road 254
Rockyview, AB T3R 1A2

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