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.

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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To The Mom Who Feels Like A Failure Part 3

Do you ever get caught up in feeling like a failure as a Mom? I do. In my life, there are four thought patterns that most commonly lead to me feeling this way. Last week we looked at the first two of these thought patterns and how to reframe them. You can find that article here. This week we are going to look at the final two and how to reframe those.

3.     I’m failing my husband and other kids.

This belief often comes because you can’t be the wife and mom you would like for your husband and other kids.

God knew your limitations when He allowed this child with special needs into your family. You are responsible to do your best to love and care for your whole family. However, when you aren’t enough and can’t do enough. Let go of the guilt and entrust that God has allowed these circumstances in your life as well as your husband’s and other kids’ lives and He can use it for good in their lives. It’s not an accident that your other kids are a sibling to a child with special needs. God has a purpose. Do what you can to love your other kids well, but when you can’t do all you wish you could do, pray and leave the rest in God’s hands. 

4.      I’m a failure as a child of God.

I grew up in a fairly legalistic church and went to a legalistic Bible college (2 actually), where having daily devotions (a time of undistracted reading the Bible and praying) was tantamount to being a good Christian. And to skip that, well, you simply weren’t a good Christian and couldn’t grow in your faith. Don’t get me wrong, the church and schools were wonderful and had solid, Bible-based teaching for which I’m SO grateful! However, there was an underlying message: you check these boxes (ideally, daily) and you’re a good Christian. Don’t, and you’re not. And being the good, perfectionistic, rule-follower that I was, I was okay with that. Until I wasn’t. Until life made it impossible to check those boxes. 

I knew that being a Christian was a relationship with God. I knew that His salvation and forgiveness from the punishment for my sins was a free gift, given by grace and not based on anything I did or could do. By dying on the cross, Jesus took my punishment for me. All I had to do was accept that and I was free and clear.

But, life with a child with special needs happened, and with it, caregiving 24 hours/day. No time for Bible study, reading, or devotions. The guilt rolled in thick and heavy. It was crippling. That isn’t God’s way – grace, a free gift. That’s man’s way – earn it, be good enough.

What other relationship do we apply that standard to? Read an email from and talk to (husband, mom, dad, sibling, friend) for 20-30 minutes a day, check, we automatically have a strong relationship. Think of all those other relationships. Who, besides a child, doesn’t understand that it’s not always possible to connect for a deep heart-to-heart every day let alone for a predetermined amount of time. Who do you not have interactions with in passing or brief texts that add to and help build the relationship?

There’s not a right or wrong method to do relationship with God, but I’ve transitioned more to a conversational, in-the-dailies, type of interaction with God as my mainstay. A sentence prayer here and there, a quick plea for help, a word of admiration at His creation of beauty in a sunset or bird song, a verse or chapter to think on through the day or week, a few minutes of intentionally turning over my challenges and cares to Him and giving thanks as I fall asleep. And, occasionally, we get a date were I actually get that sit down, uninterrupted time to read my Bible, reflect, mediate, and have that heart-to-heart talk. Yes, the more often I get those times, the more I get to know Him, love Him, see His heart, and share mine with Him. But not getting those times many days doesn’t mean I’m failing Him.

 Look at Isaiah 43:1-4 (NLT), “Do not be afraid, for I have ransomed you. I have called you by name; you are mine. When you go through deep water, I will be with you. When you go through rivers of difficulty, you will not drown. When you walk through the fire of oppression, you will not be burned up; the flames will not consume you. For I am the LORD your God…because you are precious to me. You are honored, and I love you. Do not be afraid, for I am with you.”

I love how it states over and over how, when we’ve trusted Him as our God, He is there for us and loves us unconditionally.

So, what thought patterns do you struggle with that lead you in the negative spiral of thinking you are a failure and feelings of guilt? How can you reframe those with God’s word?

Written by Sarah McGuire

Sarah McGuire  is the Mom of two boys and 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.

To The Mom Who Feels Like A Failure Part 2

As a Mom of a child with disability, do you ever get caught up in feeling of being a failure or guilt as a Mom? I am right there with you. I talk more about this struggle in part 1 of this article. You can read more about it here.

For me, there are four thought patterns that lead me to feeling guilty and like a failure. Today we are going to look at the first two of those and how to reframe them.

1.     I’m not enough. News flash - you’re human. I know you know that, but really, you are NOT God. You are limited. You can’t do it all. AND, that’s not a surprise to God, just like your current circumstances are not a surprise to God. He knows. He also knows you’re in over your head. I don’t know what is behind your thoughts of failure or guilt, but for me, I have always liked being very competent. I am a perfectionist. And I grew up with a “try harder, work more and you’ll succeed” mentality.  The problem with that mentality is that I’m human and at some point, my ALL is simply not enough. So, what then?  

God made us to depend on Him. After-all, He is God and we are not. 2 Corinthians 12:5-10 is a good one to keep on hand when you forget you’re human and start feeling like a failure because you can’t perform supermom feats. I like God’s direct words to Paul, “My grace is all you need. My power works best in weakness.” Paul had to reframe his thoughts when God didn’t remove his physical struggles and this became his perspective, “So now I am glad to boast about my weaknesses, so that the power of Christ can work through me. That’s why I take pleasure in my weaknesses…For when I am weak, then I am strong.”

Admit to yourself and to God that you can’t do it. It is beyond you. Then throw yourself into God’s care and dependence on Him by asking for help.

When I finally got to that point, after 18 long, sleep-deprived months (sigh, I was very self-sufficient), I told God, “I need you. I need you to show up with skin on and hold this child so I can sleep a few hours because I can’t do it anymore (and I literally couldn’t, my body quit and I had had a physical and emotional breakdown) and no one else is helping.” Later that week, I got over my pride and I asked some older ladies at my church who I didn’t know and had never met for help. And one couple offered to help! What a blessing they have been in our lives…Jesus showed up with skin on and their names are Mark and Marjie.

I don’t know how God will provide for your need. But I do know you need to admit your weakness, acknowledge your need for Him, and ask for His help!

2.     I’m a failure as a mom. You ARE that loving, caregiving mom. Look at what you ARE doing rather than at what you are NOT doing. Your circumstances may be a result of living in this sin-cursed world as we await a perfect eternity. However, your circumstances have not escaped God’s attention. And He sees what you ARE doing. He sees how much you love the child He has entrusted to your care. He sees what you are sacrificing to care for that child. He sees how hard it is. He sees your isolation, fears of the future, what you can’t accomplish because you ARE caring for and loving this child. He sees your faithfulness. He sees that you are a reflection of His love to this child and to those around who see your dedication. And if, like me, you ask, “Who? Who sees? I have no social life.” What about the myriad of therapists and doctors? Glorifying Him by being a reflection of Him to others and this world is your highest calling, even if it looks different than what you imagined. Your love and faithfulness to this child can speak volumes!

Reframing these thought patterns is hard but when we recognize them, we can start reframing them with the truth from God’s word. Next week we will look at two more thought patterns that sneak into everyday life.

Written by Sarah McGuire

Sarah McGuire  is the Mom of two boys and 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.

To The Mom Who Feels Like A Failure

It was another long day, which turned into another long night, week, and month. There wasn’t much distinction between day and night. Either way, my son was in pain, screaming, and needing what comfort I could provide.

Have you been there? On caregiving duty day and night. All day. All night. All week. All month for months on end.

What was expected to be the newborn exhaustion phase has continued and instead of a few weeks has lasted several months or years? Sleep deprived. Your brain is foggy. Your emotions aren’t exactly stable. You’re not sure when you last showered, an uninterrupted bathroom break is a luxury, and sleep? What is that? You’re not the picture of the joyful, intentional mother you always dreamed you’d be and still crave to be.

I don’t know if that’s you, but that’s my story.

It can seem unending. And trying to squeeze in anything else, how do you do that when you’re already on full-time duty 24 hours/day? You know, those other peripheral things like the basic daily care of your husband, other kids, household tasks and reading your Bible.

 You’re just dragging yourself through the day (and night) because while you’re no longer that energetic, “I’ve got this” mom, you are that loving, caregiving mom and you’re doing all you can to make sure your child survives and hopefully gets the help he needs too. Yet, you see all things and people you are neglecting in life and they stack up like a litany of failures of all that you are not doing. Cannot do.

If my story and the feelings of failure and guilt resonate with you and some part of your story and feelings, it’s time to reframe some of those thoughts! You may not be able to change your circumstances, but you can change your thoughts and perspective. 

Over the next two weeks, together we will look at four of those thought patterns that we so often struggle with and how we can reframe them.

Written by Sarah McGuire

Sarah McGuire  is the Mom of two boys and 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.