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.

6 Ways To Care For Your Spouse

When your life revolves around caring for your kids, especially children with additional needs, it is easy to see why marriage can take a backseat. We’re in survival mode, and we know our spouses are able to take care of themselves. But that doesn’t mean they don’t need our love and support. 

There’s a higher divorce rate between couples with children with special needs, and I can totally see why. Marriage is hard enough, but when you add the challenges and stresses of special needs parenting, there are bound to be extra bumps in the marriage.

BUT...you made a commitment to love, honor, and cherish your spouse. Here are six ways you can do that:

1. Have a heart to heart. 

You and your spouse may have different ways of dealing with your child’s special needs.  They are probably dealing with this journey different than you. But that doesn’t mean they don’t care about your child. It doesn’t mean they’re not experiencing their own grief and struggles. It doesn’t mean you both don’t have goals and dreams for your family to not just survive, but to thrive together. 

Take time to listen to each other. Ask questions. Make plans together. Determine to travel this journey together. To fight together for your children, and to fight for each other.

2. Do one thing for your spouse that shows you were thinking of them.

We have a million things on our plate, thinking about doing something for our spouse may not be anywhere near our plate. But I encourage you to think about something you can intentionally do for your spouse that would mean a lot to them and show them you were thinking about them. If your spouse has asked you to do something and you’ve been procrastinating on it, choose to get it done to honor them. Or if they’ve briefly mentioned something they would like done or would like to do, make it happen. 

If you don’t know what your spouse would like done, just ask, you may be surprised! I used to think my husband wanted the kitchen clean, laundry done, floor swept, dinners cooked, the whole shebang, and I felt like I was failing him because I couldn’t do it all. So one day I asked him what is the number one thing he wanted done around the house.

I was surprised when he said he just wanted the papers around the house to be organized, that the piles of paper stressed him out. With the kids’ school work and therapy evaluations and IEP papers and mail and bills, papers just pile up and I am oblivious to them. They don’t bother me so I don’t think to organize them that often, but now that I know it bothers him, I intentionally set aside time each week to sort through, file, organize, and recycle papers. He always notices when I do it and feels honored. 

3. Take some time to do something fun together.

Yes, I know this one is easier said than done sometimes. Especially when it’s hard to get childcare. If you can get childcare or respite to go on a date, do it! Go somewhere fun, and enjoy yourself and your spouse’s company.

If you can’t get childcare, think of something creative you and your spouse can do at home. Sometimes my husband and I would have picnic dates after the kids went to bed. We’d eat a late dinner or a dessert on the living room floor on a blanket with candles and just talk. Or watch a movie. It wasn’t fancy, but it was special because we made it so and chose to just focus on us.

4. Gift something special for your spouse just because you love them.

You don’t have to wait for a special occasion to buy or gift something to your spouse that you know they would appreciate. It doesn’t even have to be something big. It could be a funny card that reminded you of them, or something they mentioned they would enjoy having, or you could make or buy their favorite dinner or dessert.

5. Let your spouse know what you love about them.

It can be easy to feel like we’re letting people down or we’re not doing enough until someone tells us otherwise, and then it makes our day and makes a stand a little taller. It only takes a minute to let your spouse know how much they mean to you, or how much you appreciate certain aspects or qualities about them. You could also send encouraging texts throughout the day, leave a love note somewhere they’d find it, get them a funny card they’ll appreciate and write a few things you admire about them. 

My husband used to travel a lot for work, and I made a habit of writing him a little love note or getting him a card and stashing it somewhere in his suitcase or backpack. He never said anything about any of those notes, but I kept doing it anyway. One day, while we were packing up to move, I found a stack of these love notes and cards in his Bible he keeps in his nightstand. He had kept and treasured them all.

6. Hug, kiss, hold hands, all that mushy stuff.

When my husband would come home from work, a lot of times I’d be busy cooking dinner or doing something for the kids that I’d barely even acknowledge my husband’s arrival. One day I felt really convicted of that. I wanted our home to be a place he wanted to come home to, where he felt loved and wanted and so I determined from then on that when he came home I’d stop what I was doing and give him a quick hug or kiss and let him know I was glad to see him.

Hugging, kissing, shoulder rubs, cuddling, holding hands--whatever your spouse’s favorite form of physical touch is, make sure you’re incorporating it. Sprinkled in throughout the day, they are encouraging reminders that your spouse loves you and wants to be with you.

You may or may not have noticed that all these suggestions cover each of the five love languages. If you know your spouse’s love language, make sure you are speaking their language most often! But regardless of what love language you or your spouse have, incorporating all of them will do wonders for your marriage, and for your spouse. If you want to learn more I encourage you to check out Jolene Philo and Dr. Gary Chapman’s book Sharing Love Abundantly in Special Needs Families: The Five Love Languages for Parents of Children with Disabilities.

You can also check out our latest podcast episode, where we discuss embracing our spouses and this special needs parenting journey.

Nurturing our marriage and our spouse is not only good for “the one our heart loves” (Song of Solomon 3:4), but it is also healthy for our own emotional well-being, and for our children to see that their parents love each other.

Written by Jenn Soehnlin

Bio: Jenn Soehnlin is a mother to two little lads who are precious blessings and who both have special needs. She is the author of Embracing This Special Life: Learning to Flourish as a Mother of a Child with Special Needs.

Jenn enjoys blogging about faith, praying scripture, and special needs parenting at www.embracing.life. You can also find her on Facebook, Twitter, and Instagram.

Friendship–Please Keep Inviting Us

I had a dream the other night that my best friend had a birthday party for her daughter and didn’t invite mine. I woke up grumpy and sad, and it took me about half of the morning to realize the dream was the reason for my grumpiness. Our girls were born 4 months apart and we assumed they were destined to be best friends. However, my daughter Emmaus was born with a genetic disease that has caused her to have a global delay, autism and epilepsy. So while both girls still love each other a great deal, the picture of “best friends” is not quite what we imagined.

After figuring out the root of my mood I picked up the phone and called Emily, my bestie.  I told her that it was important to me that we be invited to things like birthday parties.  That we might not always come, but that having the option was really important to me. As always, she was gracious and thanked me for letting her know, and she validated that my request was important to her as well.

A week later we got an invite to a cookie party from another dear friend of ours, Sarah.  She called me and said that “it just seemed right that myself and Emmaus come if we could.” She had run the idea past Emily and Emily shared my dream with her. On top of that she wanted to know if it would be okay to share a little about Emmaus with the other second grade moms and girls, so they could be prepared and know how to best interact and accommodate a friend like Emmaus.  To say I felt loved in those moments is a massive understatement.

Do you remember the first time the isolation set in? For me it was a lovely spring day, years earlier, with some of those same friends. We took our kids to the park.  Emmaus and I sat on a blanket, alone, while everyone else played and chatted. I remember realizing that my daughter could not sit up to swing, and she was too big for me to hold, so I could at least go socialize. I felt invisible on that blanket watching the other moms chase their kids around. Did no one realize we couldn’t do the same? Did anyone even care?

This special needs life doesn’t always lend itself to inclusion. Especially in the social arena. But what has changed since that first isolated encounter is me. I have learned to be bold and say “The park isn’t a great option for us, could we (insert activity) instead?” I have learned to host, because often my daughter feels most comfortable at home. I have learned to be brave and attempt an activity knowing full well it might be short lived. And I have learned to be okay with “missing out” because sometimes it is not worth the effort. 

My friendships have changed, some have completely dissolved, but being willing to be vulnerable and share our needs even in the arena of friendship has lead to some rich relationships for myself and my daughter.

Written by Laurisa Ballew

Laurisa Ballew is a nurse by trade and mother to a special needs child by fate. She fiercely believes hope and grief walk hand in hand in life, and that storytelling is the universal language that connects us all.  Laurisa has three daughters and writes about the constant humility of parenting in her blog Raising A Sisterhood.