The Holiday Season Can Be Hard for Caregiving Families
At the beginning of each holiday when our son was hospitalized or we chose to stay home, I grieved what our young family would miss. However, as we experienced each holiday with people who weren’t part of our extended families, I found pockets of joy…
Written by Jolene Philo
The holiday season can be hard for caregiving families. I spent Halloween, New Year’s Eve, and my birthday the hospital with our infant son. Because of his precarious health when he was young, several times we made the difficult choice to stay at home for Thanksgiving and Christmas instead of spending it with extended family.
I didn’t like making those choices. I didn’t want to miss the holiday traditions I’d experienced growing up. On our birthdays, we chose the menu for dinner and whatever dessert we desired. Thanksgiving and Christmas were spent with either Mom’s extended family or Dad’s, the women gathering the day before to prepare feasts that culminated in the most delicious homemade pies I’ve ever eaten.
At the beginning of each holiday when our son was hospitalized or we chose to stay home, I grieved what our young family would miss. However, as we experienced each holiday with people who weren’t part of our extended families, I found pockets of joy.
We met nurses and doctors who gave up time with their families to keep our baby alive.
Our son received balloons and toys in the hospital.
We talked on the phone with our parents.
We received newsy letters and cards from extended family members.
We spent holidays with friends, sampling their unique Thanksgiving food traditions.
I perfected the family recipes for pie crust and fillings and brought them to share with friends.
Our 15-year-old son, when hospitalized for his final surgery, met his favorite NFL quarterback.
As each pocket of joy became part of my life, I could acknowledge my very real grief about what we missed without being devastated by it. I could move forward in faith, knowing that God would salve what we had lost with what would be gained. I could look forward to pockets of joy.
The holiday season can be hard for caregiving families, but there are simple ways to insert pockets of joy into them.
Here are a few for you to try.
Prepare the same holiday feast as your far away loved ones and eat together during a Zoom or FaceTime call.
Schedule a time for extended family to watch a holiday movie and real time chat about it on social media.
Distribute care packages, prepared by your family and friends, to hospital workers who are caring for your child during the holidays.
Create fun family traditions that can be practiced at home, in the hospital, or wherever else you find yourself during the holidays.
The holiday season can be hard for caregiving families, but pockets of joy can be powerful. Our son is almost 40. When he reminisces about the holidays of his childhood, he doesn’t mention what he missed. He mentions pockets of joy–favorite toys, movies watched together, learning to make pies and other holiday treats. And best of all, having his picture taken with Elvis Grbac, the quarterback of his beloved Kansas City Chiefs.
Written by Jolene Philo
Jolene Philo is the mother of a son born with life-threatening special needs and the daughter of a father severely affected by multiple sclerosis. In her 25 years as an educator, she integrated children with special needs into her classroom. She’s written 5 books about caregiving, special needs parenting, and childhood PTSD. She recently co-authored a book with Dr. Gary Chapman about how parents of kids with special needs can use the 5 love languages in their families.
Jolene speaks at conferences around the country and internationally, facilitates classes about childhood trauma for educators, and trains special needs ministry leaders and volunteers. She blogs at www.DifferentDream.com. She and her husband live in Iowa.
We Are In God's Loving Hands, Always
One of the hats that special needs parents wear is that of a risk assessment manager. Depending on the special needs your child has, this looks different. In our case, without even knowing that I’m assessing risk, I am nearly always assessing and maneuvering around potential meltdown triggers, dangers and needs.
Written by BreAnn Tassone
One of the hats that special needs parents wear is that of a risk assessment manager. Depending on the special needs your child has, this looks different. In our case, without even knowing that I’m assessing risk, I am nearly always assessing and maneuvering around potential meltdown triggers, dangers and needs. It’s amazing how fast I can survey an environment and pinpoint each and every possible worst case scenario. How fast I then come up with a contingency plan for each possibility and a plan for continued vigilance and surveillance until our time there is over. I am always two steps ahead in my mind. Many times the worst case never happens, but many times I’m right on and I am ready. My kiddo sees these risky spots just as quickly as I do, it seems. He is also super vigilant in his surveillance of a room. For this reason, I am just always on my toes.
There are emotional risks that are also assessed. Will we be embraced or accepted as we are in this environment? Will our hearts, both my child’s and mine, be safe in this space, with these people? I can make sure that a door is locked, or that there is appropriate physical accommodations made for our needs. That part is easy. It’s the emotional risks that often give me the most pause.
There was a time that my heart had been hurt by watching how some people respond to us. I was so afraid of my child ever feeling like he was less just because of things that are completely out of his control, and of myself feeling that parental pain of observing that, that my first thought would be to sit it out. I never did. I wanted to. I wanted to protect us from the emotional risks so badly, that I’d consider missing the parts of life that make for a full and vibrant existence.
I never benched us. We never sat out, and you shouldn’t either.
Instead, the route I’ve chosen to go when it comes to shielding our hearts, is that of specific and focused prayer. We go. We are now making our way through the Christmas season. A time of excitement and hope and waiting. There are so many opportunities to encounter this pause. Should we go? Will we fit? I no longer entertain those old fears when they enter my mind. I take a deep breath and ask the Lord to guide our day, our thoughts and to be with the people we encounter. I ask that he’ll grow their knowledge and acceptance through their time with us. I ask that he’ll guide their hearts to be inclusive and accommodating. I ask that they not treat us like we’re different, because we really aren’t. And, I thank him for the grace he’s given me, as a parent. I pray that I’ll be able to give that same grace to myself, as I navigate environments that aren’t set up for us, both physically and more importantly emotionally. Finally, I thank him for trusting me with this incredible child, and pray that I am graceful in my parenting of him.
Not one thing has grown my faith more than this practice of specific prayer. When the Lord answers your prayer directly, in real time, it’s life changing, life giving, and sets you free from fear. Choosing faith over fear is no longer a choice for me. I just plain have faith. I’ve entered spaces after praying like this and experienced the most beautiful, caring and loving interactions. I’ve met people that have become friends to me, and my child has also found real friendship and acceptance, as well. I’ve felt that we were safe and protected, just as we are.
This year, there are fewer opportunities for large gatherings. If you do find yourself looking at an upcoming outing or event with that familiar pause, whatever you do please don’t sit out. Take a deep breath and pray. We are in God’s loving hands. Always.
Written by BreAnn Tassone
BreAnn is a wife and mother to two beloved children. Her 8 year old son is twice exceptional and has been diagnosed with PANS/PANDAS, and her 3 year old daughter is his most incredible advocate. They both bring joy to this world in their own individual ways. BreAnn lives with her family in central Virginia. She is a former Special Education teacher and serves as a volunteer at her church within the special needs ministry. She is a homeschooler and coordinates groups and events within her community to support the childhood experience of her neighbors and friends. It is her conviction that all children benefit when all children are included, accepted and can live this life learning from and supporting each other.
5 Scriptures For When You Are Overwhelmed
Do you ever feel overwhelmed? Some of you may have just snorted and thought to yourself, “I feel overwhelmed right now.” As I was sitting at the dinner table last night, finishing the last of the Thanksgiving turkey and sweet potato casserole, I began thinking of the parents I know with families that are impacted by special needs, who are in this place of being overwhelmed.
It’s like the movie, “The Perfect Storm.” In this movie three raging weather fronts collide with each other to form this super storm. The movie tells the story of a commercial fishing vessel that was lost at sea with her crew.
While we look forward to the holidays, they undeniably create extra stress. The stress from Thanksgiving merges and intensifies with Christmas. When you insert another major stressor (health issues, marriage issues, additional needs related to the care of your child…all the above), you find yourself in the middle of your own Perfect Storm.
This can result in irritability, exhaustion, depression, wanting to escape life and being less able to deal with the individual stressors in a healthy way.
You may find yourself in a place of wishing you could just hunker down in the midst of the storm and wait it out until about January 2, as you feel exhausted, wrung out and overwhelmed.
If this is you, I hope that the following five scriptures bring you comfort and peace during this season.
“Your word is a lamp for my feet,
a light on my path.” ~ Psalm 119: 105“Even though I walk through the darkest valley, I will fear no evil, for you are with me; your rod and your staff, they comfort me.” ~ Psalm 23: 4
“Whoever dwells in the shelter of the Most High
will rest in the shadow of the Almighty.
I will say of the Lord, ‘He is my refuge and my fortress,
my God, in whom I trust.'” ~ Psalm 91: 1-2“For I am the Lord your God who takes hold of your right hand and says to you, Do not fear; I will help you.” ~ Isaiah 41: 13
“I, even I, am he who comforts you.” ~ Isaiah 51: 12
As this week closes, pause, take a breath and reflect on the above scriptures before diving into the to do list for next week. The same God who calmed the storms over the sea of Galilee, is with you through the storms of life today.
Written by Jonathan McGuire
Jonathan McGuire is the father of two sons and the co-founder of Hope Anew, a nonprofit that comes alongside the parents of children impacted by disability on a spiritual and emotional level. You can follow Hope Anew on Facebook here.
Hope Anew has launched the Hope Anew Online Community and would love to have you be a part of it! You can learn more at www.HopeAnew.com.
Making New Traditions
Holidays can be a very difficult time for families with kids with special needs. Many of the traditions they used to enjoy, they can’t anymore. Family gatherings they used to cherish, they can’t participate in anymore. It can be an especially hard and lonely time as the difficulties that come with special needs are magnified and what has been lost looms larger than ever. Written by Sarah McGuire
Pumpkin pie, turkey, football, stuffing, twinkling lights, snowflakes swirling down, pies, family gatherings, gifts around a tree, and cookie decorating. The holidays. They inspire a feeling of cozy warmth, celebration, and cherished memories. Until they don’t. Until thinking of those memories breaks your heart in pieces because life has changed. You now have a child with special needs or disability that has changed everything.
When our son was young and was allergic to most foods, highly sensory sensitive, nonverbal, autistic and more, the holidays rolled around and that meant no pie, no cookies, no stuffing, no Grandma’s special bread rolls, no gravy, no family gatherings. Too much noise, too much chaos and stimulation, too much change, too great of a chance for food reactions. Too much of some things, yet nothing of the desired things.
Our first Christmas with him was miserable. We were 1100 miles away from family and because of our son’s needs and our financial constraints, we didn’t even try to go home for the holidays. We decided we needed to make our own Christmas traditions since we couldn’t be with family.
In our family we do birthday desserts since my husband detests cake. With Christmas being Jesus’ birthday, our first new tradition was to have a birthday dessert with candles and sing “Happy Birthday” to Jesus after our Christmas meal.
I made a cherry pie (my husband’s favorite) with all special ingredients that we could eat on our son’s special diet, which I had to strictly abide by since he was nursing. It took me hours to find a recipe that met the requirements (special diets were rare at that time), had to special order some ingredients, and spent an hour or more making it. We were so excited about this pie. It was the pinnacle to our somewhat sorry Christmas meal. With great anticipation we served it and took our first bite – yuck! It was awful. We trashed the rest of the pie.
Holidays can be a very difficult time for families with kids with special needs. Many of the traditions they used to enjoy, they can’t anymore. Family gatherings they used to cherish, they can’t participate in anymore. It can be an especially hard and lonely time as the difficulties that come with special needs are magnified and what has been lost looms larger than ever.
Our first attempt was a sorry start to new holiday traditions. However, we persisted and 11 years later, we have some special Thanksgiving and Christmas traditions. If you find yourself in a place that we were at eleven years ago, think about starting some of your own traditions that fit your family’s needs. Here are a couple of ours to get your thinking started:
We made our own specialty-diet approved Thanksgiving menu.
We have a Thankfulness Pumpkin where each morning of November, we each say one thing we are thankful for and write it on the pumpkin with a Sharpie.
We have a Christmas moose (we couldn’t afford the famous elf so we used what we had) that hides at night every night in December and on rare occasions finds himself precarious spots. We don’t do elaborate scenes, it’s more of a “hide and seek”. The boys love searching for him every morning. On Christmas morning, he is always kneeling with Mary, Joseph and the camels in the nativity.
Every Christmas Eve we have a pajama party and watch Elf. Often we open one gift beforehand, which happens to be new pajamas.
When we aren’t with extended family, we make Jesus a birthday dessert and sing him “Happy Birthday”.
If you are in a tough season of not being able to participate in holiday celebrations like you used to, I hope you are able to create some new traditions that fit your family’s needs perfectly!
Written by Sarah McGuire
Reframing My Goals For Celebrations
Whenever there is a special occasion or an achievement we love to celebrate together don’t we? Parties, nights out, large family gatherings. Cakes, candles and balloons… Written by Cathy Porter
Whenever there is a special occasion or an achievement we love to celebrate together don’t we? Parties, nights out, large family gatherings. Cakes, candles and balloons. From cute 1st birthdays, through sweet 16, prom, exam results, new job, housewarming, weddings… it’s all mapped out like a lifetime dot-to-dot of celebrations.
Yet how hard it can be to join in with celebration occasions and get togethers when there are so many potential obstacles and triggers, too many impossibilities or improbabilities! When eating a meal is challenging, or when leaving the house is difficult, or chatting with people is too demanding. Or if a group of people is just too stimulating or noisy, or a health risk. Then celebrating the way that we think we’re expected to is just asking for a major set-back and upheaval, not the joyful treat it’s supposed to be!
Surely there’s a different way.
What if I could feel free enough to plan a personalized celebration for my children’s milestones and achievements? What if I could put to one side the expectations and start from the result I want to see.
I want to see my children feeling loved, special and relaxed – able to be themselves and to shine in their own strengths, able to feel comfortable enough to actually enjoy and take part in an activity with others. I want them to be comfortable and relaxed enough to be able to process what’s happening and to see how proud we are of them, not so overwhelmed and overloaded that they are on the verge of shut down or melt down.
I may have to be brave and allow myself to think outside the usual expectations. I may have to be courageous and give myself permission to do it a little differently. Perhaps to take a deep breath, acknowledge that it’s not going to be what I’d always imagined and that pulls on the heart strings sometimes, especially when there’s always an opportunity for comparison. I try not to notice the differences most days but when it comes to key milestones it’s nearly impossible to ignore.
Sometimes I feel a little grief for the celebration I’d always half imagined, had always assumed would be that way. Different can feel really isolating and awkward, but different can also be wonderful. If I can find the courage to let go and step into new ways of celebrating together that my children can feel more relaxed and more excited about, different might even be better than I could ever have dreamed.
Written by Cathy Porter
