Special Needs Mom, How Are You Doing this Mother’s Day?

Special needs mom, how are you doing this Mother’s Day?

Has anyone ask you that question before? Has anyone acknowledged that your feelings may not match what cards and commercials make them out to be? Have you had the courage to acknowledge, even to yourself, the swirl of emotions that surround you as the second Sunday in May approaches?

Joy.

Loss.

Love.

Grief.

Wonder.

Fear.

Gratitude.

Guilt. 

I felt all those emotions as Mother’s Day and our son’s first birthday arrived within weeks of one another in 1983. I was a wreck that May––exhausted, worried, depleted, and unable to think straight. Though our son is now an independent adult, those early emotions tend to resurface each May. As our son got older, I became wiser about how to acknowledge my feelings and celebrate being a mom without letting difficult emotions rule the day. I hope these 5 lessons help you do the same.

Lesson #1: Enjoy your Child

Your child is a wonder, perhaps not the wonder you expected, but wonderful all the same. Take a moment to enjoy who your child is––or who she was if she’s no longer physically present. What about her makes you laugh? How does she surprise you? Why is your world better because of her? What has she taught you about love? Let your answers increase your joy in the wonderful aspects of her life and lighten your heart.

Lesson #2: Make Room for Grief

The joy your child brings is real and so is your grief. This Mother’s Day weekend make room to acknowledge this emotion for what it is––the loss of many dreams. Dreams of what parenting would be like. Dreams of how your child’s development would progress. Dreams of celebrating milestones. Write your thoughts down. Tell God how much your heart hurts. Admit how hard your grief is to bear. God knows a thing or two about loss and heartache. Let him hold you as you grieve.

Lesson #3: Put on your Mama Bear

Not the kind of mama bear who destroys everything in her path to protect her child, but the kind who uses her strength to advocate for her child, her family, and herself. This can involve big things like advocating with doctors, therapists, schools, and churches regarding resources and accessibility needs. It can also mean being the mama bear who lets other people in by introducing herself and her child to other moms and kids at the park. By joining an online or in person support group for parents of kids with disabilities. By taking advantage of a neighbor’s offer to come over with coffee and cookies to get to know her and her child. 

Lesson #4: Anticipate Adventures to Come

Thinking about the future was tough when my husband and I were busy keeping our son safe and alive. I wish I could go back to Mother’s Day 1983 and assure the woman I was then that the future held both struggles and adventures. I would want her to know that the adventures yet to come were rooted in the hard stuff our family was experiencing then. The same is true for you and your family. Since anticipation is part and parcel of future adventures, start dreaming about what’s yet to come now!

Lesson #5: Trust the God Who Is Both Parent and Child

You may not understand why God allowed your child’s disability and your parenting journey. God, however, fully understands why Mother’s Day is a mixture of joy and grief for you. He has been where you are. Cling to that truth even as you doubt his kindness and are angry with his ways. Cling to this promise that held me fast when I couldn’t hold onto him. I am praying it for you this Mother’s Day.

He who did not spare his own Son, but delivered him for us all, 

how will he not also graciously give us all things?

Romans 8:32 (NAS)

Written by Jolene Philo

Jolene Philo is the author of several books for the caregiving community. She speaks at parenting and special needs conferences around the country. She’s also the creator and host of the Different Dream website. Sharing Love Abundantly With Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities, which she co-authored with Dr. Gary Chapman, was released in August of 2019 and is available at local bookstores, their bookstore website, and Amazon. See Jane Dance!, the third book in the West River cozy mystery series, which features characters affected by disability, was released in October of 2023. The audio version of Book 1, See Jane Run! See Jane Run!, was released in November of 2023.

Beyond Labels: Seeing the Beauty in EVERY Child

Do you ever feel like your child is looked down on because of their disability or special need?

In the world, you often see a differentiation between the “haves” and the “have nots.” Those in sports are esteemed more highly than the shelf stocker at Walmart. The advice of those with the largest following on social media or YouTube is more sought after than the grandfather or grandmother up the street.

Sadly, this can even be true at churches. I hear of many parents on this journey in special needs walking through the church doors looking for community and eventually walking away because they are made to feel like their child is a burden. Congregation members treated their child as less than and not really valued.

If this is your story, I’m sorry. This Easter season, I want to assure you that God does not see your son or daughter as less than.

Here are 5 ways that we can see this in the Bible. 

1. Your child is created in God's image

"So God created mankind in his own image, in the image of God he created them; male and female he created them." - Genesis 1:27 (NIV)

This verse reminds us that every person, including those with special needs, is created in God's image and is therefore uniquely valuable and important in God's eyes.

 

2. God sees beyond physical limitations

“But the Lord said to Samuel, ‘Do not consider his appearance or his height, for I have rejected him. The Lord does not look at the things people look at. People look at the outward appearance, but the Lord looks at the heart.’”

– 1 Samuel 16:7 (NIV

While human beings often focus on physical appearances and abilities, God looks at the heart. He sees beyond a person's disabilities to their true character and potential.

3. God sees my child's struggles and cares for them

"The LORD is close to the brokenhearted and saves those who are crushed in spirit." - Psalm 34:18 (NIV)

As a parent, it can be heartbreaking to see my child struggle with challenges or disabilities. But I take comfort in knowing that God sees their struggles and cares for them deeply. God is close to those who are brokenhearted, and I believe that He is with my child every step of the way.

4. We are all equal in Christ

“There is neither Jew nor Gentile, neither slave nor free, nor is there male and female, for you are all one in Christ Jesus.” – Galatians 3:28 (NIV)

In this passage we can see that in Christ, there is no distinction between people based on their race, gender, or social status. This includes people with disabilities, who are equal members of the body of Christ. God values each person equally and desires for us to love and accept one another just as Christ has loved and accepted us (John 13:34-35).

5. God has given your child a unique gift or talent to share with the world

"Each of you should use whatever gift you have received to serve others, as faithful stewards of God's grace in its various forms." - 1 Peter 4:10 (NIV)

This verse reminds us that every person, including those with special needs, has unique gifts and talents that can be used to make a positive impact on the world. By valuing and nurturing these gifts, we can help our children to realize their full potential and make a positive difference in the world around them.

This Easter season, as we celebrate the death and resurrection of our savior, I want to encourage you that not only does our heavenly father know and love you. In the same way, He fully loves your son or daughter. He does not view them as a burden or less than.

He tends his flock like a shepherd:
    He gathers the lambs in his arms
and carries them close to his heart;
    he gently leads those that have young.

~ Isaiah 40:11 (NIV)

Written by Jonathan McGuire

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Jonathan McGuire  is the dad of two boys and co-founder of Hope Anew, a nonprofit that guides the beat up, battered, and worn out parents of children impacted by disabilities and special needs through the spiritual and emotional challenges they face to Christ-centered hope and healing.

Nine Ways To Make The Holidays Great

I saw on Facebook this past week a post that said “Ruin Thanksgiving in four words.”  The post received 186 comments in one day. I didn’t post a comment because I want to try my best to maintain positivity when all possible, but there is something about the holidays that evoke a sense of anxiety, fatigue and even disappointment. These feelings seem to be felt universally.  As I scrolled through the comments, memories of holiday gatherings of the past surfaced.  Burned food, awkward interactions with family, ex’s, political conversations (especially in an election year), missing critical food elements and more were represented.  

The question comes to mind, how can it be any different?  How can we switch the narrative to “make the holiday great in just four words.”?  How, especially this year- which has embedded a layer of fear and anxiety in so many, can we make a great memory of the holidays?  I sift through my memories both good and bad, I return to the simplicity that feels comforting in the holidays.  The year that we opted for a paper table cloth with crayons and paper plates was loads of fun for the kids and really easy on clean-up.  The year that the weather was so mild that we moved the table outside and ate while the leaves fell around us. When we celebrated with lots of friends or no one but our sweet babies, or special dinners with family who are no longer with us.  With so many ways to ruin the holidays, what are the things that make them great, truly special and really at the core why we bother to do all that we do to make it happen?

Top ideas for changing the narrative and making the holiday season great in four words :

1. This year choose less

Yes less. Less food, less presents, less rush, less stress.  Let’s just choose less. In choosing less you, choose what you need most and what makes you most happy.  You will find more out of that less, more joy, more rest and more content family time. We are in the process of moving this holiday season and have been living with less stuff in our house over the past few weeks. The children’s toys have been reduced to one box of playdoh and Legos.  Yes that’s all- 2 choices. This reduction has been very positive for everyone.  Less is freeing and I promise it’s better.   

2. Do what is easy

Sometimes the complicated recipes are just too much. Sometimes fulfilling all the traditions of years past feels really hard.  I have to admit I have been cutting corners in the kitchen more and more.  I have also been trying to look for the easy button more. How can I cut the parts out that don’t bring the most joy to the experience. This path is not a cop-out, but an attempt to spend more time in relationship rather than doing more tasks.  A friend mentioned today ordering her Thanksgiving from a local restaurant this year.  Although this cuts a lot of corners, it seems like a really great idea this year.  Not only is she alleviating many time consuming tasks, but she is also supporting a local business who may be struggling. She noted she was still cooking her famous biscuits, but getting help on the other parts.

3. Bring family in virtually 

This is no one’s preferred method of being relational, but especially during COVID and the heightened germ season, it’s a great alternative. It can also be helpful with challenging relationships in which a longer visit may be too much.  Make it fun and come up with a theme for the virtual party.  Everyone brings a festive snack to the virtual time, wear a fun hat or eliminate use of a word like “turkey” during your conversation.  

4. Make it kid friendly

Let’s just soak in all the good being a parent of young kids brings!  The year we put paper on the table and set out crayons was a fun memory for everyone.  Making it kid friendly also means getting kids involved. Let the kids help cook foods they like, or have them pick recipes from Pinterest to add to the table.  The more ways a child can feel a part of the holiday preparation the more they too will find joy in all of the parts of it.  

5. Do something totally new

Switching things up often eliminates the expectation of what it should be.  My mom made a delicious traditional green bean casserole every year at the holidays.  It was a family favorite.  A few years ago I was hosting Thanksgiving and I decided to do a new twist on as many of the dishes as I could find.  My thought was that it would be familiar but lessen the comparison to my mom’s version. My mom and sisters were especially concerned about the green bean casserole being altered.  I found an updated recipe and everyone loved it more than the old one.  Doing the same things each holiday provides rhythm and predictability, but switching things up can infuse a freshness to the celebrations that may have fallen away over the years.  Doing something new minimizes expectations engrained over the years that are hard to meet.  

6. Remember “why” it happens 

Why do we take a family photo every Fall? Why do we make so many dishes for one meal?  Why do we bring a real tree in our house (they are so messy!)? Why do we search for that specific present that is nearly impossible to find?  Whatever it is that feels so crazy or unnecessary, try to remember the why.  If you can not fully identify your “why” you need to assess why you choose to continue to do it.  

7. Find a quiet moment 

I don’t know when or where you will find this moment, but find it!  This is going to be critical to survive the holiday.  I promise there will be an opportunity to find this quiet moment.  It may be on a last minute run to the grocery store, by yourself, that you turn on YOUR music and sit in the car while the song finishes.  Maybe it comes when you wake up early to begin the cooking, or late at night when wrapping that present in secret.  Find this moment and recognize it and soak it in for all it offers in refreshment.  

8. Get some fresh air

We have had some tough days since quarantine started in March- more tough days that I remember having in 2019.  The smoothest days are the ones that we are outside for as much of the day as we can possibly squeeze.  Plan to be outside.  Go for a walk, ride a bike, rake a leaf pile and jump in it.  The fresh air gives everyone a new attitude and it also gives people needed space.  Set up a yard game and get out there and play. 

9. Think of serving others

Whenever I feel down on things, I turn to gratitude and then to serving others.  Find a way to serve others this holiday season.  I have seen people put snacks and drinks in a basket outside for the delivery people.  Give your mailman a note and a water bottle, write cards or make artwork for a local nursing home, buy new socks and keep them in your car for the homeless you may see. There are so many ideas, so get your children involved too.  Service and gratitude are key characteristics that we want our children to exemplify.  They won’t become better at these things without practice, so include them in the process.  They may have a terrific idea for how to serve someone and just need a little help. 

So there you have it. 9, four word statements to improve the holidays and add some ideas to refresh the holidays and not ruin them in 4 words.  Rather you can make them wonderful in simplicity, newness, serving and identifying your priorities.

Written by Naomi Brubaker

Naomi is a mom of 3 girls ages 7, 5, and 2.  Her oldest daughter is diagnosed with ADHD and a visual processing disorder.  Her family lives in Richmond Virginia where Naomi leads the special needs ministry at their church.  Her background in special education and ability to understand parents from her experiences with her daughter give her a unique perspective in her role at the church.  Naomi loves to run, sew and take walks with her husband with any free time she has. 

Feeling Isolated in the Midst of Gatherings

The season of holiday get-togethers was upon us.  Church carry-ins, family potlucks, and work dinners began filling up the calendar. With it, our level of anxiety went up as we began thinking about what preparations we would need to make so we could be at each of these events.  Tension mounted as we checked what food was being planned at each activity.  Often, we would find that we would need to bring an entire meal for our son due to his dietary needs.  There was a scramble to figure out how we could make a holiday meal that in some way resembled what everyone else would be eating so he wouldn’t feel too left out. 

At the events, our minds would be on hyper-alert trying to ensure that someone didn’t accidentally give our son a food item that he would react to and reverse months of developmental progress.  We would constantly be monitoring Jordan for signs that he might be on the verge of overload or any indication that he might suddenly melt down.   Picture two soldiers transporting precious cargo to a new location. They are driving through areas that are often friendly, the locals are waving, giving thumbs up to them but they are still vigilant for an attack that might come seemingly out of nowhere.  Their eyes trained to spot things most people wouldn’t notice.  While we would engage with friends and family, our guard was constantly up.  We were amid people who loved us but we still felt alone.

As I think about these struggles, I can’t help but think back to the very first Christmas.  The angel Gabriel came to Mary and let her know that she would be giving birth to the son of God. During this time, Gabriel also told her about her relative Elizabeth who was experiencing her own birth related miracle. Just a few days after receiving the news, Mary traveled to be with Elizabeth.

Elizabeth and her husband Zechariah had been unable to have children and now were old. Zechariah was a priest.  He was in the temple sanctuary burning incense when the angel Gabriel met with him and told him that he and Elizabeth would have a son who was to play an important role in preparing the way for the coming of the Lord.  Zechariah questioned how this could happen since both he and his wife were so old.  As a result of his doubt, Gabriel told Zechariah that he would be unable to speak until their child was born.

Imagine the relief that both Mary and Elizabeth must have felt to have had someone that they could talk to.  Mary likely received many incredulous looks from family and friends as they found out she was pregnant and probably had many of her own fears and doubts.  What a relief to have someone that believed her and didn’t question her story that the baby she carried in her was the son of God.  Imagine what it would have been like for Elizabeth not being able to really talk to her husband about the baby growing in her and not having other women in the community who could relate to what she was experiencing.  How extremely valuable it was to be able to have someone there who got it.  They valued each other’s company so much that Mary stayed with Elizabeth for three months, until just before Elizabeth was due.

If you find yourself feeling on guard this Christmas season and just trying to get through it, take comfort in knowing that you have a heavenly Father who sees you and knows what you are going through.  You might not have angels singing in the sky above you, or shepherds coming to your door, which is probably a good thing…talk about sensory overload, but the same Father who sent a star to guide the wise men to their Savior knows your every need, your heart, your struggles and is with you when you feel alone.  He didn’t just provide a Savior and turn His back on you but He is with you every day.

I’m praying that this Christmas season, when it is so easy to lose sight of why we are celebrating and when our precious routines are thrown out the window, God will provide you with an “Elizabeth”.  That He will direct you to someone who gets it, that you can encourage each other and that this season truly is a season of celebration. You are not alone.

We would like to hear from you.  What is your biggest challenge during the Christmas season and what helps you the most during this time?