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.

Chronic Grief and the Holidays

Next week is Thanksgiving and Christmas isn’t far behind! I love these holidays but for many families the holidays can be a sad time as they grieve loved ones who have been lost, relationships that have been severed or other difficult situations.

For families with children impacted by disability, this can also be a difficult time.  There can be a grieving of lost family traditions, the mourning of distanced family relationships due to lack of understanding of your child’s disability, and grief related to how the disability impacts your child.

Don’t hear me say that there aren’t many wonderful things about our children or that they are somehow less than. I’m NOT saying that at all. Our children are fearfully and wonderfully made but that doesn’t mean we don’t grieve. This grief can even become chronic. 

You may be thinking, “What is that? Chronic grief?”

With “typical” grief there is a definitive start point and while the timeframe varies from person to person, the person grieving eventually arrives at a place of acceptance and the grief generally diminishes. It may spike on significant dates such as birthdays and anniversaries. 

With “chronic” grief, the loss is a living loss. At its core, there is a discrepancy between what is perceived as a painful reality on one hand and continues to be dreamed of on the other hand. The loss is ongoing since the source of the loss continues to be present.

Lorna Bradley had the following to say about the grief we experience as parents in this disability journey:

“All parents have hopes, dreams and expectations for the life of their child.  There is an expected order to life with developmental milestones leading toward maturity and independence. With every milestone that is not met, every hardship the child faces related to their need, every struggle the parent faces as they care for their child, the parent is thrown back into grief with all its ferocity. The parent will eventually develop new dreams for their child and family but will always mourn the child and family life that never was.”

Are there things you are grieving this holiday season? Be assured, that you have a savior who gets it. Jesus was acquainted with grief intimately.

Isaiah 53:3 – A man of sorrows acquainted with deepest grief.                               

Hebrews 2:18  -Jesus was tested & suffered and is able to help those who are tested.     

John 11:33-35 – Jesus wept over the death of Lazarus.

Hebrews 5:7-9 - He offered prayers & pleadings with a loud cry & tears to the One who could rescue him from death.             

John 12:27 – My soul is deeply troubled.                  

Matthew 26:37-38 – He became anguished & distressed. His soul was crushed with grief to the point of death.

In this Thanksgiving and Christmas season, if grief is hitting you extra hard. Be assured that you are not alone. God is our helper and has given us a comforter.

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.

Rejoicing Vs. Grieving

“Rejoice in the Lord always. I will say it again: Rejoice!”

~ Philippians 4:4

If there was ever a verse in the Bible that I felt like taking the white out marker to, this at one point may have been right at the top of the list. Let’s be real, when we are in the midst of a hard time this probably isn’t our go-to scripture passage. As a side note, if you are coming alongside someone who is struggling, this shouldn’t be your go-to scripture to encourage them.

When we are struggling, we are often told to REJOICE as if that is an exclusive emotion and that we shouldn’t grieve the loss.

Did you know that you can feel multiple emotions at once?

At times, these emotions can even seem contradictory to each other. For example, we have the word, “bittersweet.”  Can you think of a time that was bittersweet to you? It might be the completion of a therapy but the loss of a therapist. It may have been the graduation of a child or when a friend had to move out of state for a job.

There is a focus that is often missed when a caring soul tells us to rejoice. The focus that is missed is, “in the Lord.” No matter how bad things get, I can look at my heavenly Father  and rejoice in who He is. I can rejoice in His character, His power, that even when it feels like we are alone…He never leaves us. I can rejoice that someday I will be with Him in heaven and the effects of a sin-cursed world will no longer wreak havoc on those I love.

While I am rejoicing in the Lord, I can still grieve a particular situation. I can grieve that milestone my child didn’t reach. I can grieve the therapist who left that they connected with. I can grieve the additional struggles and pain that my child may experience in life due to the effects of their disability.

In fact, we need to grieve those things.

There have been times when I have asked couples how they coped with various difficult situations in their journey through disability and they replied with they just chose to rejoice. I hate to be the bearer of bad news but that is just called denial. This is one of the official stages of grief and can last for a short period, for decades, or can come and go.

When we live in the land of denial and refuse to move forward in the grieving process, it will re-emerge eventually. It may re-emerge as negative emotions or even health issues.

If you find yourself in this place of grieving, don’t feel guilty or like it means that your faith isn’t strong. It is part of the journey and it is part of healing.

As I close, I want to encourage you to REJOICE…IN THE LORD. However, when you rejoice in the Lord, know that He is with you as you journey through the land of grief. 

What is one character trait of God that you can praise Him for 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.

The Other R Word

We dropped Luke off at the Monarch Boarding Academy on August 9th, 2018. It was one of the few times, in our 25 year marriage, I’ve seen my husband break down.

I did too but that was nothing new. I’d been crying daily for a few months thinking about Luke not living at home with us. Caring for Luke, who has autism, has been my main job for 14 years. He has been my most constant companion.

After I had a serious injury during one of Luke’s meltdowns our school district suggested last winter that we consider visiting residential schools. I was hoping and praying to at least find a good option close to home. Then Luke could keep attending Giant Steps, a private day program he has gone to since the end of kindergarten. His wonderful teacher, assistants, and other therapists loved him and didn’t want to see him go.

Mostly, though, I told my husband (a very tough, caring guy who serves as a police LT. and therefore can’t always be with us) even if it meant being home bound or getting hurt again I wanted Luke home with us.

I knew someday FAR OFF we would need to figure out a good living situation for him but he is only 14.

Over the last few months the Lord has shown us bringing Luke to Monarch Center for Autism is His will in a variety of ways, but it is still gut wrenching; the hardest thing I’ve ever done.

On the long car ride home after leaving Luke, I felt torn up, raw, sad and guilty. During the 30 day transition time we couldn’t visit Luke but when we called or Skyped he seemed to be doing much better than me. I am very thankful for that.

Something making this whole transition even tougher is the feeling that I don’t fit into my special needs world like I have for the past decade. While so many of our friends, with and without children who have special needs, have been extremely supportive I have gotten comments that tear me up inside.

Heck, I’m sure I have said, or at least thought some of the comments myself.

Hearing “I would NEVER do that to my child” from another parent of someone with special needs crushed me. It seems to me that RESIDENTIAL is the other R word. Or at the very least something too scary to think or talk about.

The week after we brought Luke to his new home, we brought our 18-year-old, Brandon, to college. It was tough saying good-bye and leaving him but a whole different experience. The college had a ceremony for new students and their parents to celebrate the new beginning and give time to say good-bye. At Augustana College’s orientation a few months ago a speaker for the parents discussed how we might be feeling and gave us some tips for letting go. These things didn’t happen for us with Luke, although the staff at Monarch have been kind and helpful.

My great comfort is knowing how much God loves Luke and how He has used him in people’s lives in the past. In my good moments I pray for my boy to keep knowing Jesus’ love and showing that love to others at his new home and school. Heck, right now both Luke and Brandon are missionaries at their respective schools!

Written by Deb Abbs

We (Hope Anew) are starting an online community October 1, including a group for those families whose loved ones with special needs live apart from them. We would love to have you join!

Read more from Deborah Abbs and others in Life on the Spectrum. To learn more follow us on our FB page Life on the Spectrum Book.

Because no two people with autism are the same, Life on the Spectrum’s authors all bring their unique perspective and experiences to the table. Our honest, raw and heartfelt stories show how God is at work in the real-world struggles of families impacted by autism.  Come on the journey with us!

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When Life Hands You Lemons

Years ago, my husband and I had felt God call us to move to a new state, and we left behind friends and family and stepped forward in obedience. But we struggled to find a new home church where we felt we could fit in. And our young sons, ages one and three at the time, were receiving diagnosis after diagnosis. My life began to revolve around their therapies, doctor’s offices, fighting with insurance, and researching online how to help my boys. Anxiety and depression took turns settling into my life and making themselves cozy. 

I thought of the quote, “When life hands you lemons, make lemonade.” I held on to my growing pile of lemons and prayed for some mighty act of God to miraculously turn them into lemonade. He didn’t. 

God felt far away and no longer like the good God I had loved and served for the majority of my life and I experienced a crisis of faith that scared me. 

Releasing the Lemons

In desperation I turned to scripture and stumbled upon a verse in which we are commanded to “Let go of all bitterness, rage and anger….” (Ephesians 4:31) and I realized I was holding on to a lot of negative things in my life. I had become bitter and angry at God because He wasn’t being the God I expected Him to be and I wasn’t living the life I had always expected to live. I had to surrender all those lemons of expectations and bitterness and doubts and struggles to God. I had to be open to what He wanted to do in my life.

I started thinking about all the heroes of faith in the Bible. No where do we see our Bible heroes getting everything they wanted and desired. They all go through a lot of struggles, sometimes decades of trials, before God’s plan comes to beautiful fruition. Joseph, Abraham and Sarah, Moses, Job, Ruth and Naomi, David, Jesus, the disciples, Paul, and many others had to go through their share of lemons and hard circumstances.

But they became heroes of the Bible because they didn’t allow those lemons to paralyze them like I had. They didn’t cling to rotting lemons. No, they decided to focus on God and God was able to turn those lemons into something good. 

A Season For Lemonade

In Ecclesiastes 3 we are told there are different seasons in life. Seasons of grief and mourning and lemons. And seasons of joy and dancing and sweetness. 

It’s ok to go through seasons of hard times and grief and lemons. But eventually, we have to let those lemons go. We’re not meant to carry them forever.

As I learned to release the lemons I’d been holding, I began to see all the sweet things in my life. I had so many things to be thankful for. Precious children and a loving husband. A new strength and a new purpose that came through my special needs parenting trials. And so much more.

What lemons are you holding on to? Seek God and what He has to teach you with your lemons. And get ready to sip on some sweet lemonade.

Written by Jenn Soehnlin

Jenn Soehnlin is a mother to two young boys 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 and special needs parenting at www.embracing.life. You can also find her onFacebook, Twitter, andInstagram.

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Dear Mom Of The Child Who Will Never Say, "I Love You",

I have often heard it said that being a mom is a thankless job. With all that moms do, I tend to agree that they are often not shown the appreciation that they deserve. More than 60 countries around the world have set aside a day to celebrate mothers. In the United States, tomorrow is Mother’s Day!

In homes around the country, moms are being treated to gourmet breakfasts in bed. This often consists of their child’s favorite foods ranging from the always delicious chocolate covered cereal to toast and ketchup, which tends to be more of an acquired taste. They are being presented with beautiful dandelion bouquets and sweet cards saying, “I love you.” 

Dear Mom of the child who will never say, “I love you”,

Today I want to talk with you.

On this Mother’s Day your child will not whisper, “I love you” and you would love it if they brought you a breakfast of chocolate covered cereal.

Instead, your day will look very similar to yesterday. You may be in survival mode. Your child may be in meltdowns after trying to attend that special Mother’s Day service at church. Instead of smelling flowers, you may be smelling dirty diapers as you clean your teenager.  

Know this, while your child cannot say it in so many words and they may not know the joy a hug brings to you, they do love you. 

It has been said that, “Actions speak louder than words.”  

In our recent podcast, we interviewed Jason and Sara Hague. Sara shared that a pivotal moment for her was realizing that she needed to treat everything her child did as communication.

Are there behaviors that only you see? Do you have days when your child appears to do great socially but collapses in tears when they get home? Are there times when your child clings to you after the smallest change to their routine? Maybe there are times you are craving a break but your child will not allow anyone else to take care of them except you.

Through their actions your child is communicating that they trust you like they trust no one else. When their world “falls apart” and change happens, they cling to you because you make them feel safe.

If actions speak louder than words, then please know that in their own way your child is shouting, “I love you!” on this Mother’s Day.

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.