While the merry bells keep ringing
May your every wish come true
May the calendar keep bringing
Happy Holidays to you
The words to this timeless holiday tune immediately brings about a plethora of emotions, feelings, expectations and experiences. And so it begins, the holiday season that is. For those of us who have children with special and unique needs, we face the dichotomy of having the nostalgic ideals of what we envision the holidays should look like. All the while we are confronted with the reality that life once again isn’t what we had imagined it to be, leaving us feeling disappointed and deflated at times.
There are a few helpful principles that we would like to pass on to you as you work through the unique challenges that come with having children with special needs especially during this time of the year.
Acceptance is our best friend.
Accepting the reality of the life that we have been confronted with, generally does not come without a certain degree of grief and sorrow. It is scary and can be quite painful to admit that the life that we hoped for and had dreams that we had may not come to be. When learn to accept that life is different than what we had envisioned, it is then that we open ourselves up to a new vision that leads to new dreams. The holidays may not fit within the “Norman Rockwell” kind of experience. However, coming to terms with our reality will prove to not only be our best friend as we begin to change the lens through which we look, but doing so will help us recognize those simple and yet rich blessings that have been present all the while that we may have been unable to recognize.
Different is not less
In our culture, we have been conditioned to define the value of an individual based upon what they look like, act like, how much they earn, what they do for a living, what degrees they hold, the neighborhood that they live in, etc. Having a child with special and unique needs is a paradigm shift in this regard. Our kiddos more than likely do not fit into the parameters listed above. We are frequently reminded of how our children are different from their peers during the holidays. We encourage families to consistently adopt the mantra, “My child may be different but they are not less!” Yes, our children may not be like their peers, but they are individuals of unique value and worth. They bring beauty into our lives and into the life of this world in very unique ways. John who is one of the founders of Celebrate Hope has a 14 year old son who has autism, his name is Braeden. Witnessing the joy that Braeden finds in the decorations of the holiday season is a gift in and of itself. Most children of his age no longer experience the excitement of the holidays. Not so with Braeden, he embraces the mystery and wonder that this time of the year brings. It not only makes him happy, but his excitement brings joy to others as well. Different but not less.
Reasonable expectations are essential
Developing healthy expectations is always a work in progress. It is one of those “two steps forward and one step back” kind of things. There are moments when we are daring enough to push the envelope of what our children may or may not be able to tolerate. At times we might be met with a successful experience. Other times we are met with the harsh reality that the expectations that we have set may not be reasonable ones due to the stress, anxiety and discomfort that it places on our children and equally so upon us. We encourage families to be real about the threshold of limitations of their child and the family unit. Setting reasonable goals and expectations paves the way for successful experiences. Stretching the limitations of our children and family often leads to a higher degree of stress and disappointment. You know your child best. Only you can determine what your child and family is capable of doing. We encourage you to define what those limitations are and honor them accordingly.
Honesty is a gift.
A number of years ago, John’s family was willing to be honest and real about the many family gatherings that occur during the holidays. In a few cases, taking their son to those family gatherings only led to feelings of discouragement, stress and pain. They chose to be honest with themselves about the limitations that they were facing and made the decision to respond to those limitations accordingly. They chose to be honest with themselves and with their family about the challenges that their son Braeden was encountering when they attended family gatherings at locations other than their own home. Honesty led them to host as many family gatherings at their home as they could rather than traveling elsewhere.
Often times we discover that families attempt to accommodate the wants and wishes of family and friends at the expense of the health of their families. Setting healthy boundaries and communicating those limitations is not at all about being “self-centered” but instead it is about being real about what you are capable of doing. Regardless of whether family and friends understand, the health and well-being of your family is of utmost importance. When the crisis hits and your immediate family reaches their breaking point, you are the ones who are left to pick up the pieces. Protect your limitations and communicate them openly and honestly.
Flexibility is crucial
It is no secret that the lives of families who have children with special and unique needs is often filled with countless twists, turns and unexpected experiences that just happen. It is a part of our reality. Meeting those twists, turns and unexpected challenges with rigidity and resistance will often escalate the situation and prove to be counter-productive, leading to a heightened degree of stress and pain for all parties involved. On the contrary, making the decision to enter into an experience or event with a willingness to be flexible and open to the needs of your child and family will help facilitate successful experiences. Many of us have been in those situations when our child reached that point when they were “done”. Many of us know firsthand the ramifications of resisting the discomfort that our child was experiencing while attempting to push through their stressful emotions instead of electing to honor their limitations and respond accordingly. Once again, setting healthy expectations and being willing to be flexible is more apt to lead us to be able to say, “that was good” or at the very least “decent” rather than having feelings despair, disappointment and pain.
At Celebrate Hope, we want you to know that you are not alone. It is our desire and passion to help you continue on the movement from despair, loneliness and pain to a place of hope and peace. We are here to walk with you. We do so by conducting seminars, facilitate support gatherings and do one-on-one coaching for those individuals who are parents, caregivers or family members of those with special and unique needs. Please contact for more information. Happy Holidays to you and yours, might you experience glimmers of peace and hope along the way.
It’s THAT time of year. The summer is drawing to a close and with that means the start of a new school year. For those of us with kids with special and unique needs what emotions start churning for you? Is it “relief” that a regular schedule will be resumed? Is it “anxiety” that with a new school year comes the unknown of how your child will do? Or is it perhaps “sadness” at the continued realization that the level your child is performing is not and will never be at the same level of their peers?
Whatever your emotions, take comfort in knowing that as parents we MUST allow ourselves the opportunity to “FEEL” what we do, while not fearing the emotion. If we allow ourselves to FEEL… then we can DEAL with the emotions that come. Emotions, after all, let us know we care about someone or something. Emotions let us know we are alive! Whatever we are feeling we need to ask ourselves why we are feeling a certain way and then learn how to deal with that emotion in as healthy a way as possible.
If as a parent you are feeling anxious about the school year. Ask yourself what is making you most afraid? Verbalize your feelings with a safe, nonjudgmental trusted friend, teacher or therapist to learn if your anxiety is reasonable for the situation or not. Sometime we can over process and over think situations to a point it can literally make us sick. We all know that doing that is not healthy, but if we can catch ourselves when we realize we are heading down that path, we can learn to retrain our thought patterns to handle the anxiety BEFORE it gets the better of us. Talking to someone we trust allows us to explore options as a means of reducing the anxiety about the start of the school year. Sharing our emotions also empowers us to discover those things we as parent’s CAN DO to reduce that uncomfortable feeling. It may be as simple as asking the teacher to provide weekly check in reports on one or two “good things you child did during the week. Focusing on positive things can help to retrain our brain so that we don’t drift toward the negative.
Friends, John and I both know that raising kids with the challenges our kids all have is NOT for the faint of heart. We get that. We simply want to let you all live the best life you can possibly live regardless of what challenges your child experiences. This is not easy stuff and we will always be the first to admit that, but we also know that there is beauty and joy…yes JOY in embracing your emotions, in working through them and in raising these very/unique and special kids.
Shortly after receiving clarity about the specific challenges that each of our children were facing, both of our families began to access the extensive pipeline of services that were available. It didn’t take all that long to develop some conclusions about our respective experiences. Observation #1: there is a plethora of specialized therapies and services that are available for our kiddos. The advancements in medicine and the studies of human behaviors has expanded the resources available for assistance. It goes without saying that these resources are indeed an asset, however the numerous resources can also be overwhelming and inadvertently affect every aspect of our lives as the care of our child becomes our primary focus. Observation #2: though the resources available to our children are often unlimited, the support for those of us who are parents and caregivers is lacking. The journey forward can become a very lonesome and disparaging road. We have discovered that the intensive efforts to care for our children often causes those few systems of support that we once experienced, begin to dissipate. Our commonalities often wane and we are left in this vulnerable place of wondering, “who is there for me?”
In the book, “Tribe” by Sebastian Junger, he suggests that “human beings need three basic things in order to be content: they need to feel competent at what they do, they need to feel authentic in their lives and they need to feel connected to others.” The feeling of being “content” and the basic necessities that are associated with this state of existence can be dramatically affected when we face certain life circumstances and challenges that make us feel quite the contrary. Raising a child with special and unique needs can cause us to second guess ourselves and question our ability to be a “good” parent. Feelings of chaos and anxiety can set in and we can begin to experience feelings of insecurity. And as was mentioned before, these moments of stress can leave us lying in bed at night with feelings of being utterly alone and isolated from the rest of the world as we wonder if anyone cares and is walking with us. These feelings are justifiable, as belonging and feeling like we are accomplishing a higher purpose is the most primitive need that we possess in life.
Both Lisa and I, along with our families have and continue to experience the full spectrum of these feelings and emotions at different times along the way. It is for this reason that we strongly advocate discovering and creating a community of support. Creating relationships with those who are able to empathize with our own personal journey while providing support is priceless. Building such relationships is a huge building block that serves greatly in caring for ourselves and finding the path towards a healthier self. And it is for this very reason that Celebrate Hope was created. As we often share in our seminars, in our writings, in our one-on-one coaching and in our support gatherings, the best thing that we can do for our children is to take care of ourselves as we traverse the journey ahead.
“If only I had a crystal ball”. Many of us have heard or have even used this particular line at some juncture in our lives. Those words generally happen at some of the major crossroads that we encounter along the way. Changes in careers, decisions around relationships, financial planning and decisions made around raising children to name a few. If only we knew what the future would hold, it seems that life would be so much easier.
Not knowing what is ahead can be very scary, not to mention quite overwhelming. The future carries with it experiences that are unknown that inevitably affect life as we know it. And yet, agonizing over what might happen or in some cases that which may never happen can be crippling. This is especially true when it comes to thinking about what the future holds for our children with special and unique needs.
“Where will they live as they get older?”
“Who will take care of them?”
“Will they be able to have some form of employment?”
“Will they be able to adequately communicate their needs?”
“Will there be enough financial resources to guarantee a comfortable life for them?”
These questions along with a host of so many others have the ability to keep us up at night. Lisa and I as co-founders of “Celebrate Hope” ask many of these same questions concerning the lives of our own children who both of which have special and unique needs.
Recently I was able to find such joy. Summer can be a very tough time of the year for parents with special need children. Routines are often non-existent, boredom sets in, structure can be lacking and these three things alone can become a recipe for a challenging summer. Last weekend, we were on our boat on the lake with a few friends. Braeden, our son with autism loves the water but can become very unsettled when he gets bored. On this particular day, we had spent some time pulling the tube behind the boat and ended up putting down an anchor. As I sat on the back of the boat, it occurred to me that Braeden had been laying on the tube, swimming and interacting with the other kids as we anchored there in the middle of the lake and was quite content. It was one of those moments of being thankful for the progress that we have had the privilege to experience.
Another such experience happened just a couple of weeks ago. This time it was an encounter that occurred between Lisa (my business partner) and her husband Dave’s son. Their son too has special and unique needs. Our two families have the privilege of having a very close relationship with one another. We have experienced a great deal of life together, and over the time that we have known each other, we have laughed and cried over a large number of life experiences that have come our way.
In the midst of it, I have had the opportunity to develop quite a bond with their son. He has struggled over the years in many ways, particularly with social anxiety. On this particular day, I was out in the yard working and their son rode his bike into our driveway looking for our oldest son Dylan. I mentioned that he was not home and yet what ensued brought a tremendous amount of delight. For the better part of 15-20 minutes their son carried on a conversation with me as we talked about a host of topics, including complaining about parents…Ha!!! During the conversation and the moments that followed, it was one of those moments of joy! I couldn’t help but celebrate the progress that he had made that brought him to this point that he is more comfortable and at peace with who he is, so much so that he was comfortable in having a conversation with me.
At Celebrate Hope it is our desire to help create a balance between the future and remaining in the present moment. The future does need to be considered, and plans need to be made, however it is also our goal to encourage parents and guardians to discover those moments of joy as they celebrate the little wins along the way that allow them to say, “Life is good!”
Take a moment today to discover those moments and celebrate them!
The summer months often carry with them a tremendous amount of positive feelings, emotions and experiences. Backyard barbecues, days on the lake, trips to playgrounds and amusement parks, family vacations, weekends at the beach house, etc are just a few of the countless events that end up creating memories that last forever. Lisa Goyette my partner in “Celebrate Hope” and I were just catching up on the plans that our families have for the summer as school comes to an end. There were some really awesome perks that we quickly listed off that we are grateful for such as early morning schedules ceasing for a time being, a reprieve from carting kids from one destination to another, not to mention the monitoring of grades and prepping lunches for the week. Our conversation came full circle as we talked about some of the challenges that come to those families who have kiddos with special and unique needs.
Though the “Parents Magazine” kind of summer family lifestyle is appealing and all, for those of us who have found ourselves in this place of having children with special and unique needs that image often times does not come to pass. The reality of life as it is brings with it a different way of life with unique emotions, experiences and challenges. Here are a few that come to mind:
- The end of another school year means another year of goals and steps towards development in the books. With it comes a reflection on the strides and progress that our kiddos have made as well as the sadness of realizing that they are falling further behind their peers. Take some time to be honest about the past year, but also take some time to celebrate the progress they have made.
- The end of another school year means that the consistency in the life our our children will be altered and with it will bring unique challenges and experiences that will need to be managed and dealt with. To manage the stress, take some time to think about how you can create the much needed structure that so many of our kiddos require.
- We will face the glamorized images of what a summer should look like for families during the summer months. With this we may be confronted with the necessity to alter what activities we do as families in order to adapt to the needs of our children. This can bring with it a certain amount of sadness of the “I wish we could’s”. Be sure to create moments that are a success. Maybe a summer trip across the country is out, but what can you do as a family to spend quality time together that will end up being a “win”?
- Let’s face it, having our kids home can create a certain amount of fatigue and interactions that can prove to be stressful. Those moments in and of themselves bring with them a number of emotions and feelings that are real and normal. As much as structure is needed for our kids, opportunities to “escape” and be an adult are also essential for our emotional, psychological and relational health. Embrace those moments with gratitude and avoid the feelings of guilt that come at us.
- It is so easy to compare our lives to that of the Jones’ which often leads to getting in a funk when we start to look around and observe the lives that other families are living. Remember, there is no such thing as normal. Each of us hold the keys to define the norms that define the lives that we live. We ALL face challenges during the course of this journey. The only life that we can chart the course for is ours and the present is the only thing that we can really do anything about.
For more information on how we can support you as a parent, guardian or family member of someone with special or unique needs please be sure to contact us. All of our information is on our website at www.celebratehopellc.com. You are not alone, we are here to help you along the way. Continue to press through the challenges that you face and be sure to celebrate those rich moments when “all is well with the world”.
Much of what we experience in life begins with a dream. As children we dream of being firefighters, doctors, pilots, a parent to our own children to name a few. Eleanor Roosevelt once said, “The future belongs to those who believe in the beauty of their dreams”. Walt Disney was very well known for his ability to dream. He believed that “A dream is a wish your heart makes.” To dream is to be human. Even more, to dream is to possess hope.
Without exception, dreams are very much a prominent part of the lives of those who choose to have a child of their own. Even when our children are at the earliest of ages, we begin to formulate dreams. We dream of what the first word will be that will be uttered from our child’s lips. We dream of the activities that they will be interested in, the scholastic success that they will experience, the friends that they will discover, their educational endeavors and the careers that they invest themselves into. We dream of the person who they will choose to spend their lives with, not to mention the family that they may choose to create when the time is right. We can’t help but to dream.
Possessing dreams for the lives of our children is healthy and purposeful. It not only is an exhilarating enterprise when life is good, but it also has the ability to sustain us when life doesn’t turn out as we had anticipated. As co-founders of Celebrate Hope LLC, it is our desire to help others to find joy not only in those moments when life is all that we hoped it would be, but we also help families to navigate through those moments in life when our dreams comes crashing down. Wherever you might have found yourself at this point in your journey, don’t stop dreaming for indeed, “the future belongs to those who believe in the beauty of their dreams” even though that which comes to be may be different than what we envisioned.
Celebrate Hope is committed to “Partnering with families, empowering them to move from crisis to hope.” We will help you:
- Embracing reality – When life brings us unexpected turns and a change in reality through the lives of our children and family members, the first challenge that must be confronted is adapting to what is. “Celebrate Hope” provides the tools and support to work through the grief, the pain and those initial feelings and emotions.
- Empowered to cope – Celebrate Hope seeks to assist families in finding the strength, energy and direction in the midst of the challenges that life brings in order to press on with “what is”. There are many days during the course of the journey that “coping” is all that we can do. Celebrate Hope seeks to provide families and individuals with the tools to do so.
- Accepting/Defining? a new reality – Celebrate Hope helps families to work through the process of defining a new perspective in the midst of experiencing a life that was not anticipated or desired. Defining the new path is essential in moving forward in a healthy way in life.
- Moving forward with hope – As devastating as some of the circumstances and situations can be, especially as it relates to the lives of our families and children, experiencing hope is always within reach. Celebrate Hope provides the tools and resources to envision and live out a life of hope.