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I know how horrible it is to feel like you aren’t doing enough for your child. Us moms are fixers. We should be able to somewhat fix our children too, right?! 

I know the feeling of not having enough hours in a day, of being spread unbelievably thin, and of secretly hoping you catch a cold so you have an excuse to lie down. I’ve had all those feelings, wished for all those things, and the whole experience was extremely deflating. 

If your child with special needs is between 2-8 years old, you are probably in the thick of everything. You have no choice but to attend those medical appointments, assessments, and therapies. I won’t sugarcoat it. You are in the middle of an unavoidable storm, swimming in the turbulent deep ocean waters, barely keeping your head afloat. This might just be the hardest time for moms of children with special needs, so stop beating yourself up. You are not to blame for anything. You are doing enough!  

I wish I knew I was doing enough during those times. Looking back, I don’t know how I did it actually. But I did do it, and I accomplished a heck of a lot! (You would not believe how much I did if I told you). But I drowned at one point, and it probably could have been avoided if only I had gotten a hold of my thoughts. I too believed I was never doing enough. 

I don’t want you to drown. Let me throw you a life jacket, so you can at least catch your breath and listen.

Let me start by repeating that you are doing enough.  Stop for a minute, take a deep breath, and review everything you’ve done so far. Can you acknowledge that you have taken many steps toward helping your child? In theory, on a rational level, can you accept this as the truth? Perhaps you aren’t processing it on an emotional level, (which I totally get when you are in that panicky state of emergency), but if you can separate yourself from those emotions, just for a minute, do you not see it?                                                                         

I’d like to offer you more than a life jacket now. I’d like to give you a small break by inviting you to come to sit in my rescue boat for a bit. It’s just a brief pause, as I know you will have to get back in the waters. 

I am giving you permission to rest because I know how we moms can push ourselves beyond our limits. Do you not see that absolutely anyone thrown into the middle of the deepest part of the ocean, during an unpredictable storm, would undeniably need to rest once in a while? Why can you not see that this also applies to you? Are you not human? Ladies, we are often the ones who put these crazy, unrealistic expectations on ourselves. 

As someone who has survived the storm, I can offer you this advice now because hindsight is always 20/20:

1-There is nothing wrong with you, you are not weak, so stop beating yourself up! You are the strongest of the strongest! You are powerful and effective! Your child could not have picked a better soul for a mom! Any mom and every mom in your position would feel the exact same way. It is how you choose to talk to yourself and handle the unavoidable stress that will determine whether or not you drown.  Try writing these affirmations down and placing them somewhere where you will be able to read them often:

I am doing everything that I can at this time in my life, with my current resources, and all my other responsibilities. There are some things that I can do to help my child and some things that are out of my control. I give myself permission to ask for help and rest properly, as I know that both these things allow me to gather the strength to continue helping my child. 

2-Ask for a life jacket when the winds pick up! You are not alone. Admit to yourself, to your partner, and to your team of professionals, when you need some support. The best way to ask for help is by being extremely specific, stating things matter-of-factly, and staying emotionally neutral. Reach out to a support group! Call that other mom of a child with special needs and empty what’s in your heart. No one expects you to do it all on your own, so stop expecting this of yourself! 

3-Get in the rescue boat sometimes to rest! Why wouldn’t you? Do you have supernatural powers that would allow you to keep up this frantic swimming pace forever? I don’t think so, so why do you expect this of yourself? What you do every day is not only physically demanding but emotionally taxing. It is wise to know when to rest. Don’t wait until you need mouth-to-mouth resuscitation. Know when to stop when the fatigue starts to settle in. 

Do you even know your fatigue signs and symptoms? Take time to journal them, and share your observations and findings with your partner.  Despite how it may feel at times, your partner also wants what is best for your child (and you). 

4- Do something that makes you feel alive! Are you perhaps unconsciously numbing out the painful feeling of not being able to control your child’s outcome, by forcing yourself to do more and more? God knows I did, but did not know I was doing it at the time. By going overboard, I had no time to think, and no time to feel. When I stopped to rest, I was swept into a vortex of unbearable sadness, and so I forced myself to keep going. But, by numbing out the pain, we numb out the pleasure. It is impossible not to do so, and that just adds to the feeling of being tired on a soul level. 

So how do you address that? When you stop to rest, you make sure to force yourself to also include doing something that makes you feel alive. And when you feel alive, you feel motivated to want more for yourself, and you are in a better state of mind to tackle your complex feelings. 

What makes you feel alive? If you do not know anymore, let me help you! My sessions with the horses are guaranteed to make you feel alive. To get out of this habit, you need to get out of your comfort zone, think out of the box, and get into the arena of life with the horses! 

I have so many tricks in my bag! I know we can help you gather the strength to swim back to shore when the storm is over. This too shall pass. I promise. I am here for you…

www.mariannedisipio.com

info@mariannedisipio.com

403-828-0242

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.