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. Written by Sarah McGuire
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.
Rejoice To Do Good
After the birth of our first child, my reaction to the rejoice to do good thing would have been to throw my Bible across the room. Written by Jolene Philo
Rejoice to do good.
Those words from Ecclesiastes 3:12 have been easy to obey this month with the release of Sharing Love Abundantly in Special Needs Families, which I co-wrote with Dr. Gary Chapman. Yeah, he's the love languages guy. So I have plenty to rejoice about these days.
But when I was a kid surreptitiously carrying my dad's urinal to the empty in the church bathroom or feeling the stares of neighbor kids as I wheeled him around the block, the command to rejoice to do good stuck in my craw.
After the birth of our first child, my reaction to the rejoice to do good thing would have been to throw my Bible across the room. If I'd had time to read my Bible. Which I didn't thanks to sleep deprivation, and atypical baby care like pumping breast milk 6 times a day to pour down his feeding tube, and way too many 240 mile round trips from the remote town where we lived to the doctor's office.
All of which prevented the throwing of my Bible. And proves that Romans 8:28 is true. God does work all things to good for those who love Him and are called according to His purposes.
Back to rejoice to do good thing. My point is this.
Throughout my childhood, when Mom, my siblings, and I cared for Dad we were doing great good. My husband and I also did great good caring for our son during the hard first years of his life. In both situations, we had no idea we were doing good. We were just doing what loving families do–we were taking care of our family members who couldn't care for themselves.
I'm sure there were people who pointed this truth out to Mom, but it went over my daydreamy head. I think there were people who pointed out this truth to my husband and me, but we were too sleep deprived and stressed for it to register. Not to mention that hearing such a sentiment from a person who is hasn't raised a child with disabilities or special needs would have been hard for me to swallow.
I, however, am a parent who raised a child with special needs. I am like you, so I can speak this truth into your heart. You are doing great good.
You do great good every time you race your medically fragile child to the doctor's office or hospital.
You do great good when you stand calmly beside your child when he has a meltdown at the grocery store.
You do great good when you advocate for your child at IEP meetings and annual reviews.
You do great good work when you change your adult son's diaper or your adult daughter's menstrual pad.
You do great good by showing up at church with your entire family on Sunday morning.
You do great good when you drag out of bed every night to comfort your child.
You do great good by biting your tongue and choosing words of affirmation instead of frustration.
You do great good when you look into your child's eyes and say, "I love you. You are worthy. You are made in God's image."
In these ways and a thousand million others every day you are doing great good.
Though you may not see all the good now, one day–in this world or the next–you will. In that day, you will be amazed by the good God has accomplished through you and through your child. This is why we can rejoice to do good even in the hard days of caregiving. We can rejoice to do good because as believers and children of God, we stand upon God's promise to use our present situation for eternal good. We know, without a shadow of doubt, that the best is yet to come.
Now to Him who is able to do far more abundantly beyond all that we ask or think,
according to the power that works within us,
to Him be the glory in the church and in Christ Jesus to all generations forever and ever. Amen.
Ephesians 3:20–21 (NASB)
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. Most recently, She co-wrote 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.
As an Amazon Associate, Hope Anew earns from qualifying purchases.
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. Written by Sarah McGuire
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.
Angels or One-To-One Aides
One of the great things about the summer for our kids is the opportunity to attend a camp, whether it is an overnight go-away camp or just a local day camp through a church or private organization. Written by John Felageller
“I lift up my eyes to the hills. From where does my help come? My help comes from the Lord, who made heaven and earth.” (Psalm 121 ESV)
One of the great things about the summer for our kids is the opportunity to attend a camp, whether it is an overnight go-away camp or just a local day camp through a church or private organization.
It is, however, a challenge for our special needs kids because of the extra support they require, and it is a real blessing when they have a qualified one-to-one aide to support them there. But there is always a fair deal of anxiety, at least for me, since even when it is a camp with a special needs focus, you still wonder if the person will be a match for our child.
This year, our 11 year old non-verbal autistic son attended one week of a day camp at our local YMCA, along with some other special needs friends from his school community. I thought it would be great initially, since I thought it would be a wonderful experience, but I didn’t relax until my wife let me know who his one-to-one aide was, his Special Olympics swim coach. This is a man who runs a wonderful program at the YMCA for our special needs kids with private swim lessons and also coaches and trains them to compete, and above all else he is a loving and a caring man.
The week my son attended camp turned out to be one of the highlights of our year, as every day we received pictures his coach would send us of him engaged in a variety of activities, including sports in the gym and on the field, swimming and games. The tears would fill my eyes as I saw the evidence of my son interacting with his peers in typical ways, not looking out of place or unhappy with his surroundings, but with huge smiles and the joy of a child at play. My favorite memory is the short video I received of him practicing to shoot a basketball in the gym with the help of another counselor, a skill he has really been trying to learn for sometime.
All of this would not have been possible if it wasn’t for his coach, who didn’t need to go out of his way to support just one student, but his love and kindness showed through when we needed him. It was a profound reminder that when we think something is impossible for our kids, God can make a way by bringing just the right people into our lives when necessary. Our prayers for him to have a good experience were not just answered, we were exceedingly blessed because he had the one person that fit him the best.
A week later when we were on a camping trip, I was playing with my son in the arcade room at the resort, and he was immediately drawn to the basketball shooting game way back in the corner. This is the type of game he had played many times in the past and I knew he really enjoyed playing, but many times in the past it had been somewhat difficult for him because he lacked the gross motor skills to do it easily. However as he ran up to the game now, he easily picked up the balls and pushed them up from his chest appropriately, the result being the balls traveled to the hoop and either rebounded or went right in, something that he was never successful at.
My mind immediately raced back to the video I watched with the counselor who helped practice the skill with my son repeatedly. That would not have been possible without the gift of our son’s very special one-to-one aide that showed up at just the right time and became the special “angel” we needed then.
I know there may be some activities or programs that he may not always be equipped for, but I also know that if we pray for help, help will come and we can trust that it will be better than expected.
Written by John Felageller
John lives in Northbrook, IL with his wife Elizabeth and his son Christopher (ASD), and is currently an Elementary Teacher at a Charter School in Chicago, IL. He is a regular contributor to Key Ministry’s Special Needs Family blog, and is both a live presenter and on Key Ministry’s Facebook page. He coordinates a Special Needs Dads meet-up in his community and works with several other local Special Needs organizations that serve both parents and children.
Connect with John on his Facebook page 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. Written by Sarah McGuire
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.
The Power of Praying Scripture as a Special Needs Parent
My younger son has a speech delay, my older son a neurological-based speech disorder called apraxia that requires frequent and intensive speech therapy to learn to speak. He didn’t say his first words until he was almost four. Devastated by the lack of conversations I had with my children, one day I turned to scripture. Surely there was a passage or verse about speech that would encourage me, right? Written by Jenn Soehnlin
My younger son has a speech delay, my older son a neurological-based speech disorder called apraxia that requires frequent and intensive speech therapy to learn to speak. He didn’t say his first words until he was almost four. Devastated by the lack of conversations I had with my children, one day I turned to scripture. Surely there was a passage or verse about speech that would encourage me, right?
Before long, I found two scriptures relating to words and speech that jumped out at me.
“How sweet are your words to my taste, sweeter than honey to my mouth!” Psalm 119:10
“A word fitly spoken is like apples of gold in settings of silver.” Proverbs 25:11
When my children finally said their first word and then slowly added to their vocabularies, I viewed each of those words as something sweet, something special to treasure, like an apple of gold in settings of silver.
I then combined the words I loved from both of these verses to form my new prayer for my children. I prayed for new “sweet apples of gold” every morning and on the way to speech therapy and I thanked God for the new “sweet apples of gold” after my children said a new word or phrase. I honestly love this phrase to refer to my childrens’ speech and love how it has become a part of my prayers, praying God’s own words to thank Him for the new ones my children could now say.
After that, I became passionate about praying scripture and looking for scriptures to pray relating to topics that mattered to me and I wanted to see God move in.
Praying Scripture For Your Special Needs Children
As a special needs parent we learn to advocate for our children–with insurance companies, with doctors and specialists, with schools, with churches, and within the community. But one of the best ways to advocate for your child is on your knees before the throne of God.
But it’s also easy to pray for the things we want. We might pray for God to move mightily for our children in ways that are not in His will or timing, and then we grow discouraged by prayer, and begin to question God’s love and care for us and our children. I have found that praying scripture is one of the best ways to combat this discouragement, because we are aligning our prayers and desires with God’s own Word and His desires.
Here is a list of 15 scriptures to pray for your child with special needs. Feel free to print this list out and go through each verse one at a time. Consider praying one a day, or journaling your thoughts and prayers about each one. Make them personal to your child and your family’s situation.
Praying Scripture For Your Own Special Needs Parenting Journey
The special needs parenting journey can be lonely. It can be overwhelming. It can lead to a deep grief, depression, and/or an overwhelming anxiety you’ve never experienced before. You may be struggling in your faith and believing that God is good and cares for you and your child(ren).
I desperately prayed for relief and God felt so silent and so far away until I began turning to scripture and praying scripture for my own spiritual and physical wellbeing. By turning to and praying scripture, I was able to begin processing my thoughts and emotions in a godly, rather than worldly way and could hear the love He had for me and my children in His Word.
Here are 20 scriptures to pray as a special needs parent. These scriptures really helped me to let go of my own expectations and desires and trust God’s plan and purpose for me and my children. They restored hope and peace in my life and I pray they do the same in yours. Feel free to print them out and make them personal to your own journey, your own struggles and experiences.
There is power in God’s word, and there’s also power in our prayers. When you combine those two powers together, get ready to see God move in mighty ways in your life, your heart, your faith, and your children.
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 atwww.embracing.life. You can also find her onFacebookandInstagram.
How Is Your Foundation?
I think one of the biggest shifts for me as the parent of a child with special needs was becoming aware of when I begin to wilt. It happens over time then one day I wake up and think “HOW DID I GET HERE?” Written by Laurisa Ballew
Have you heard the parable about the house built on rock verses the house built on sand? It is from Matthew and is super short and sweet. The gist of it is that if you don’t have a strong foundation, you will not weather the storm. I think a storm is a great metaphor for living this special needs life. The swells come and can cause some significant damage if we aren’t prepared.
I think one of the biggest shifts for me as the parent of a child with special needs was becoming aware of when I begin to wilt. It happens over time then one day I wake up and think “HOW DID I GET HERE?”
It is the slow crumble, the neglect of ourselves that leads to a house that has crashed to the ground. Because when your child isn’t well, isn’t sleeping, is self-harming, or when you have been denied AGAIN for resources you need, it is easy to neglect ourselves and be in the same state as the sandy house if we don’t have a good foundation.
The problem isn’t that we are weary, from time to time. The problem is that we don’t pay attention until it is too late and our foundations are weak and then we fall apart.
Of course we can and should spiritually prepare. However, I also believe there are very practical, things we can do to have a strong foundation as well.
1. You have to prioritize yourself. Oh my word! Did I really just write that out?! Yes. You did in fact read that right. YOU MUST PRIORITIZE YOURSELF. You are not a hero for putting everyone’s needs before your own. You, my friend, are human too. And if you are going to take extraordinary care of your child you must first take extraordinary care of yourself.
2. You need to attend to your own health. Both preventatively and when there are issues. Go for your check-up. Establish a relationship with a primary care doctor for you. Go to the dentist. I know, you don’t have time. No one does. But do it anyway. Appointments will get canceled because of your crazy life. RESCHEDULE THEM. I also am a big fan of working out and eating things other than the crust of my children’s sandwiches. But let’s not get crazy. If you are starting from scratch maybe just start with scheduling those appointments? We wouldn’t dream of neglecting our child’s health the way we often neglect our own.
3. Figure out what brings you to life again and do it. Do you love art? Do you like working out? Do you enjoy wandering the aisles of target alone with no agenda? What is it that recharges you? This is where the trendy topic of self-care comes in. But this isn’t about spending money on expensive luxury things. It is about finding out what recharges you and gives you life. Then make space to do that, regularly.
4. Get some help. Build your team. It truly takes a lot of people to help support one individual with special needs. And it is a constant game of finding people to help, that you also trust. Maybe grandparents, a spouse, helper or PCA. Maybe it is a friend or the para from school. You have to have a support team that will not only remind you that you are looking a bit wilted, but that will step in and help you prioritize yourself. No one will care for your child as well as you do. And that is Okay. Because you need a break sometimes, which is also valid and important.
So what is your foundation looking like? Did you weather the last storm with just a bit of hail damage? Or was it more significant? I would encourage you to look objectively at this and make a plan if you are looking a bit shaky.
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.
When Life Is Too Hard
The phone buzzed with an incoming email. I was sitting in our minivan out in my parents’ garage hiding and crying – a full on ugly cry with gasping sobs. Written by Sarah McGuire
The phone buzzed with an incoming email. I was sitting in our minivan out in my parents’ garage hiding and crying – a full on ugly cry with gasping sobs. We were coming to the end of our visit to the Midwest where both of our families lived. It was only a couple of days until we needed to go “home.” Eleven hundred miles away from help and our support system. I was feeling the crushing weight of the non-stop caregiving for a 4-year-old and special needs two-year-old piling directly onto me again and I didn’t have enough strength or energy to bear it.
During this full-on ugly cry, I was also crying out to God. I wasn’t asking anything or listening to what He might say, or focusing on Him. I was just unloading my soul. My soul thoughts were pretty straightforward, “I can’t do it. I can’t do it. God, it’s so much. It’s too much. It’s beyond my ability to bear. I can’t do it.”
With tears running down my face, I checked my email. A sweet friend back in Texas had been praying for me and felt God wanted her to share a few things with me. She had no idea what was going on. We hadn’t had any contact in weeks. Specifically, she shared three verses or things drawn from three verses. All three were exactly what I needed to hear, but the one that stood out the most was, “I can move mountains.” This was taken from Matthew 17:20 (NLT), “You don’t have enough faith,” Jesus told them. “I tell you the truth, if you had faith even as small as a mustard seed, you could say to this mountain, ‘Move from here to there,’ and it would move. Nothing would be impossible.”
One of the things I love most about the message from God through my friend, it focused on Him and what He can do “I can move mountains,” not on my lack of faith.
God knew I was already so discouraged. I didn’t need to have one more area of failure pointed out. I needed to change my focus, get it off of what I can and cannot do and focus on Him and what He can do.
It’s a decade later, and I still get overwhelmed by life circumstances. I often need to get my eyes off of me and my circumstances and look at God and who He is. Two of my all-time favorite chapters of the Bible are Isaiah 40-41, especially 40:12-28 because this section illustrates how He is amazing, mighty, and without equal. Here are a few of my favorites (40:12, 25-26), “Who has held the oceans in his hand? Who has measured off the heavens with his fingers? Who else knows the weight of the earth or has weighted the mountains and hills on a scale?” “ ‘To whom will you compare me? Who is my equal?’ asks the Holy One. Look up into the heavens. Who created all the stars? He brings them out like an army, one after another, calling each by its name. Because of His great power and incomparable strength, not a single one is missing.”
When life is too hard and you are overwhelmed, remember He can move mountains. He’s in the business of impossible, and your problem is not too big for Him.
Written by Sarah McGuire
Sarah and her husband, Jonathan, co-founded Hope Anew in 2016. Hope Anew is a non-profit that comes alongside parents of kids with special needs on the spiritual and emotional side of that journey guiding them toward Christ-centered hope and healing. They connect with parents through a curriculum-based Hope & Healing Workshop they wrote and facilitate as well as writing, speaking, and podcasting focusing on the challenges and struggles of special needs parenting. They will also be launching an online community in the fall of 2019. Both Jonathan and Sarah also write for Key Ministry, a ministry that helps churches welcome families with special needs kids and also has a family-focused blog and Facebook page.
To The Mom Who Is Broken
Sarah couldn’t sleep all night. I heard her come into the bedroom and could see the hint of sunlight coming in from behind our curtains, when I finally heard the gentle rhythm of her breath indicating she was asleep. She was no longer staying awake at night because she was with a child who needed her. She was awake because of her own health struggles. It was going to be another rough day. Written by Jonathan McGuire
Sarah couldn’t sleep all night. I heard her come into the bedroom and could see the hint of sunlight coming in from behind our curtains, when I finally heard the gentle rhythm of her breath indicating she was asleep. She was no longer staying awake at night because she was with a child who needed her. She was awake because of her own health struggles. It was going to be another rough day.
Later in the day, she would greet me in her perpetual state of exhaustion. Sadness and frustration in her eyes as she wished she could do more, be the wife and mom that she always dreamed of being, and make memories together as a family as we did activities together.
Her brokenness was not a lack of motivation or desire but a reality that stood like a locked door with the life she wanted on the other side.
A couple years ago, we were visiting with an older couple who had walked this journey of special needs before us. The wife shared that through the process of raising their son, she became broken. Her old self died and she was no longer the same woman that she used to be.
This resonated with Sarah and it may resonate with many of you. At first, I was so close to the pain that it grieved me. I didn’t want to accept the truth of the statement. I didn’t want to let go.
Time has passed and the sentiment still holds true in Sarah’s mind. However my perspective has changed as I see that while there was a death of her old self, the person she has become is so much more.
It may seem cliché, but to me, the change more resembles that of a caterpillar changing to a butterfly. When a caterpillar is in its chrysalis, it goes from eating everything in sight and growing, to being dormant for a period of days to weeks. At the end of this time it struggles to finally emerge from its cocoon, unfurl a beautiful set of wings and then launches into a life it could never have imagined as a butterfly.
I once heard the story of a child who watched a butterfly struggle as it was coming out of its chrysalis. The child felt so bad for the butterfly struggling that she tried to help by freeing it of its encasement.
The butterfly was never able to fly and it died. It needed the struggle to build the strength to fly.
Sarah may never have the strength to do what she did before, and while she is delicate, she has become much more beautiful than before she was broken.
Where are you at? Do you miss who you were and how strong you used to be? Do you, like Sarah, feel like a significant part of you has died and you are no longer the person you once were? Do you feel like you are failing others and at times like you just want to cry?
Be encouraged, in your weakness these struggles are strengthening you. You are beautiful and you are loved.
He heals the brokenhearted and bandages their wounds.
Psalms 147:3
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.
The Waiting is the Hardest Part
My autistic, non-verbal son has several ways he likes to communicate with us. It is mostly through body language, some basic sign language, as well as through the communication app on his iPad. Written by John Felageller
“Blessed is the one who listens to me, watching daily at my gates, waiting beside my doors.” (Prov. 8:34, ESV)
My autistic, non-verbal son has several ways he likes to communicate with us. It is mostly through body language, some basic sign language, as well as through the communication app on his iPad.
There are times when his actions are very clear in terms of what he’s trying to tell us, such as when he goes to sit on his favorite stool near the door to garage. This indicates that he’s ready to put on his shoes. Putting on your shoes, of course, means that you’re getting to go somewhere: walking the dog, a drive to a favorite park or forest preserve, or maybe just shopping at a big box store. Mom and dad, however, are not always ready or, more specifically, willing to go on another errand or to another place for a long walk in the sweltering summer heat.
While we love the fact he is finding a way to share his needs with us! It does make it frustrating for us to honor his request but to also give him boundaries when it’s not a good time to go somewhere, or, I dare say, we are not in the mood to go. I often wonder about what goes on his head as he sits there and waits while his parents decide what we are going to do. I think about how much I would just love to be able to grab my shoes each time he sits on that stool and just say “sure thing kiddo” and off we would go on another adventure to wherever.
In a more profound sense, my child’s experience sitting on that stool and waiting is kind of like my experiences waiting on God for many of my own hopes or prayers, and how difficult it is to sit on the “stool” of life while we wait on an answer from Him. If I learned anything from this analogy with my son, it’s this. As his father he needs to know that I do see him, sitting there. I do hear him even though he has no voice to ask. I know from my son’s experience that I am equally seen and heard by God when I ask for what I need. While the waiting is hard, the comfort in being seen and heard makes it easier.
So my prayer is for the strength that comes in the silent knowing of His presence, that I will learn to be patient when I immediately want an answer for myself, or my child but that I know it will be answered exactly when it needs to, when He’s ready.
Written by John Felageller
John lives in Northbrook, IL with his wife Elizabeth and his son Christopher (ASD), and is currently an Elementary Teacher at a Charter School in Chicago, IL. He is a regular contributor to Key Ministry’s Special Needs Family blog, and is both a live presenter and on Key Ministry’s Facebook page. He coordinates a Special Needs Dads meet-up in his community and works with several other local Special Needs organizations that serve both parents and children.
Connect with John on his Facebook page here.
When Life Hands You Lemons
Years ago, my husband and I had felt God call us to move to a new state… Written by Jenn Soehnlin
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.
As an Amazon Associate, Hope Anew earns from qualifying purchases.
Laying Down The Life I Expected
In the beginning I thought I would never get the hang of this chronic life I live. Written by Laurisa Ballew
In the beginning I thought I would never get the hang of this chronic life I live. The list of what my daughter “needed” to be successful was never ending (is never ending) and I was an expert at beating myself up over not being enough to get it all done. I jokingly refer to myself as her personal assistant, but if you have a kiddo with special needs you know that isn’t a joke.
In so many ways I was resentful that I now had to submit to this life I didn’t really choose. Sure, I chose to have kids, but if I’m really honest this isn’t what I thought I was signing up for.
I LOVE my daughter, and I WANT her. But I don’t really love the extra hard that comes with a chronic disability and special needs.
I was years into our journey before I understood there is a difference between SUBMISSION and SURRENDER. And in so many special needs journeys that I see, people are stuck in a place of submission instead of landing in a place of surrender.
Submission for me is hard. It feels like I’m being shoved in a direction against my will, and as hard as I might try there is a reality that I am not strong enough to run the other way. And the moment I get used to the idea that in a specific area I am not going to get my way or “fix” her. A NEW area pops up. It’s never ending. You get the point. I don’t like submission.
But surrender is different. In surrendering I get to CHOOSE to lay down the life I expected to have and then fully step into the life I actually do have. It has a choice involved.
Often these things come in sequence. We are forced to submit to our circumstances, but in order to move into a healthy place we must choose to surrender to them. Let me clarify, surrendering doesn’t not mean to give up. It just means to stop fighting against. We can do this in both practical and spiritual ways.
Understanding that you and God are on the same team. That this is NOT what God had for us. He created us to live in community with Him, but also gave us free will and Man chose sin. And thus we live in a broken world. And God is every bit as sad about it as we are. Having the realization that in my sadness as a mother God himself was also heartbroken has become an extremely comforting thing to me.
Giving yourself a break. While I wish I was talking about a long restorative trip to Hawaii, what I mean is stopping the negative self-talk. You are one person, and you cannot possibly provide every need for your child. And you really can’t for a child with special needs. Having grace for our missed steps is vital.
When you feel the tension rise, that familiar “kicking and screaming” or “this really isn’t fair”, PAUSE and consider, “How would it change things if instead of pushing those feelings off or stuffing them down you stepped into them and felt them?” And then you stood in that discomfort and made a plan. Not a plan to get you out of the situation, but a plan to help you thrive within it.
Thriving within our life situation is all about the tools with which we equip ourselves, the God who never leaves our side and the mindset we choose to live out of.
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.
Born Broken: An Adoptive Journey
“God, I think You made a mistake. I really do. I’m not the right mom for this.” A review of Born Broken: An Adoptive Journey by Sarah McGuire
“God, I think You made a mistake. I really do. I’m not the right mom for this.”
A mom who doesn’t have all of the answers. And at times, felt like she didn’t have any answers. A mom who has doubted herself and her worthiness to be a mom. A mom who has spent sleepless nights to give her son the security he desperately needed. A mom who has searched for answers and help for her son and found some. A mom who knows what it’s like to not be able to “fix” it. A mom who never gave up on her son.
In Born Broken: An Adoptive Journey, Kristin shares the story of her son, Alexander, who was brain damaged and diagnosed with Fetal Alcohol Spectrum Disorder. If you have adopted a child and are struggling to find answers for mystifying behaviors, are collecting diagnosis acronyms like a Scrabble champ, and yet the explanations you are getting are falling short of explaining what you see in your child, reading this book could give you a good picture of what FASD can look like and if that is a possibility for what is really going on with your child.
As I read Kristin and Alexander’s story in Born Broken, there was so much that completely resonated with me and brought me right back to specific moments in our story, even though my son’s disorder was Autism. Although our sons’ diagnosis are different, our mom journeys bear a striking resemblance to each other. In Born Broken, you will find another mom who understands, has “been there”, and who has shared the struggle, uncertainty, joys, triumphs, and heart breaks that comes with being a parent of a child with special needs.
“I had already experienced too much judgment to reach out for acceptance. I kept my mouth shut and didn’t tell a soul how empty I felt.”
Kristin is a mom who has come to the end of herself. She has given everything she had to the needs of her son and found that she wasn’t enough. But, in that she also found a God who gives strength and redeems us.
Kristin is a mom who gets it. She is the kind of mom and friend I love to listen to, learn from, and grow with and I think you will too.
Born Broken is the book for you if you want a simple read that is a story that feels like curling up on a couch with an afghan, a hot chocolate, and an understanding friend who has been there and expresses all the inner thoughts and doubts you’ve struggled with too. There may be a few tears involved, but they are the cathartic, cleansing kind because someone else understands.
We will be releasing a podcast with Kristin the first Monday of July, you won’t want to miss it!
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.
As an Amazon Associate, Hope Anew earns from qualifying purchases.
When Life Overwhelms You
Have you ever felt like you could not go on and that it was all you could do to take one more step? Written by Jonathan McGuire
Have you ever felt like you could not go on and that it was all you could do to take one more step? Some of you are thinking, “I’m there right now!” I get it. I’ve been there.
I was recently encouraged by the story of Kyle Maynard. Kyle was born with a rare condition known as quadruple congenital amputation. What this means is that while he was still in his mother’s womb, fibrous bands prevented the development of his limbs. All of his limbs end before the start of his knees and elbows.
Through the encouragement of his family, Kyle didn’t let his disability slow him down. As a youth, he played football, wrestled, and was awarded the title of GNC’s Worlds Strongest Teen by bench pressing 23 repetitions of 240 lbs.
As an adult, Kyle continues to inspire others. After training and conditioning at different climbing sites around the United States, he set out with a group to climb Mount Kilimanjaro! On Friday, January 6, 2012, Kyle embarked on this new adventure. In ten days time, he crawled the 19,340 feet to the summit of Mount Kilimanjaro and became the first quadruple amputee to reach the top without assistance!
Kyle shared that with having to crawl the entire way, climbing really was not fun for about 95% of the time. He spent most of the time “looking at rocks, dirt and bugs. And after 14,000 feet, there are no bugs.” In those moments where he felt like he could go no further, Kyle would pause and look back at where he had been.
It is easy to get bogged down in the day to day. Each day you may feel like you are climbing your own Mount Kilimanjaro. The effort it takes to just keep moving forward is momentous. The needs of your child may be so great that it is consuming all of your focus.
If this is where you are at, I want to encourage you to stop and look back at where you have been. The clouds may have surrounded you and it may be hard to see right now, but there is beauty in the journey and you’ve come a long way.
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.
Embracing Your Child's Heart
I constantly worried about my four year old son’s development and his multiple diagnosis. I continually analyzed how far behind he was his peers…Written by Jenn Soehnlin
I constantly worried about my four year old son’s development and his multiple diagnosis. I continually analyzed how far behind he was his peers, even children years younger than him, and watched them do effortlessly what we’d been working on for months and sometimes even years in therapy. I was so focused on my son’s development, I wasn’t enjoying just being his mom.
And then my two year old son began receiving a few diagnoses of his own. I found it very easy to focus on his anxiety and strong-willed nature, and how I wished he had neither. I resented his strong-willed personality, his anxious behaviors and meltdowns with all the other stressful things and never-ending appointments I was dealing with. I was so focused on my son’s behaviors, I wasn’t enjoying just being his mom.
And then I read this verse:
“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 man looks at. Man looks at the outward appearance, but the Lord looks at the heart.” (1 Samuel 16:7).
I’d read and heard this verse many times, but I’d never put it in the context of my own children. The verse convicted me initially. I definitely was focusing on their outward appearance and their development and their behavior and not on their heart.
But then the verse freed me to love and embrace my children for who they are, how God uniquely crafted them.
Looking at the heart
Once I started looking at my older son’s heart, rather than his development and skills, I found so much to be thankful for, so many strengths and passions and gifts to nurture in him. For the first time in a long time, I truly just enjoyed being his mother and enjoyed spending time with him.
Once I started looking at my younger son’s heart, I started to see what the behavior was indicating. He wanted a little more attention from his frazzled mama. A little more structure in our days, since each day’s schedule was different with various never-ending appointments and errands. And once I started getting more intentional about giving him some undivided attention and more structure in our schedule, his overwhelming behaviors slowly stabilized to a more manageable level as he began to feel more nurtured and supported. We began to have a lot more fun together.
It’s easy to focus on our children’s outward appearance or behavior or development. It is easy to compare our children to other children. But we are called to look at our children’s hearts, as God does.
It takes an intentional mindset shift to make it happen, but by striving to focus on how God uniquely crafted my children, and their hearts, their gifts and passions, it is bringing so much joy and purpose into my parenting.
Written by Jenn Soehnlin
Jenn Soehnlin is a mother to two 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.
As an Amazon Associate, Hope Anew earns from qualifying purchases.
Moms Of Kids With Special Needs Are Pretty Special
Has having a child with special needs changed how you see the world? It certainly has for me. I was struck by this realization when… Written by Sarah McGuire
Has having a child with special needs changed how you see the world? It certainly has for me. I was struck by this realization when Jonathan and I were out seeing the sights and doing typical tourist things in Cleveland, OH with some new friends, also parents of kids with special needs. We absorbed history, admired artifacts, meandered through quaint shops, enjoyed delicious foods, and had some fun laughs together. It was a perfect spring day with the sun shining, the pressures of life and home a hundred miles away, and delightful companions to enjoy it with and to get to know.
As a couple of the ladies and I stood waiting outside a shop in the sunshine while the husbands were choosing delicacies in a bakery, the conversation turned to one lady and her necklace. She explained how she saw it in a second hand store, and even though it had some dings, she had loved it immediately. It was made of metal links, that from a normal conversational distance, couldn’t be distinguished from each other they were so small and tightly linked. It was cylindrical in shape, forming sort of a flexible metal tube. There was nothing flashy or especially attention-grabbing about it, but it was lovely against the solid colored background of her red sweater.
Another dear lady I know and love always picks the pumpkins that are lopsided, scarred, or warty to decorate her fall table and doorstep. Because they are the least likely to get picked by anyone else. She favors the homeliest looking dog at the rescue. She always champions the underdog. She too is a mom of an adult child with special needs.
As the first lady explained that her necklace had dings and dents, but she loved it, I thought, “Isn’t that quality of seeing the beauty in things that others would pass over or reject so characteristic of a mom of a child with special needs.”
At a certain point on this journey, if we keep learning and growing and working through all the hurt and struggle, we learn to see beauty in the mess of life. We learn that beauty is not what the rest of the world would define as beautiful. We learn that the dents and dings often add more beauty rather than detract from it.
I know someone else who sees that way too.
“But God chose the foolish things of the world to shame the wise; God chose the weak things of the world to shame the strong.” ~ 1 Corinthians 1:27 (NIV)
“Go out quickly into the streets and alleys of the town and bring in the poor, the crippled, the blind and the lame.” ~ Luke 14:21 (NIV)
“The Lord is close to the brokenhearted and saves those who are crushed in spirit.” ~ Psalm 34:18 (NIV)
God doesn’t reject you because you struggle, doubt, fail, are weak, broken, or guilty. No, just like the loving Father that He is, He bends His knees and crouches low, opens His arms wide and eagerly waits for you to run into 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.
When I Am Just So Exhausted
Have you ever been through a season in your life when you were constantly tired? As a special needs parent, I believe it happens to all of us on a fairly regular basis, however I recently experienced a time in my life when it seemed as though I could not get any rest at all. Written by John Felageller
“Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls.” (Matt. 11:28-29, ESV)
Have you ever been through a season in your life when you were constantly tired? As a special needs parent, I believe it happens to all of us on a fairly regular basis, however I recently experienced a time in my life when it seemed as though I could not get any rest at all.
My son had just come through a relatively serious surgery and recovery process, for which my wife took a medical leave from her job to stay home. While she was able to support our son at home, she quickly burned herself out on the level of daily care she was finding that she needed to provide.
I certainly did my best to support her when I was home, however that also meant that as a teacher I was putting my various schoolwork on the back burner. The only time I was finding that I was able to actually get any work done was when everyone was asleep, which meant that some nights, at least on the weekends, I wasn’t getting much sleep.
I thought to myself, “Where would I find the strength to get through the long sleepless nights and the even more exhausting mornings, even on the weekends, when it was challenging to just sit and have breakfast with my son.”
I reflected on what might be positive about these experiences, and what gifts might be in these challenging moments that God could be bringing now.
First, I considered the time I had to myself late at night, when the house was quiet, and although I was busy at work, I could rest in the peace of the home while locked away in the office. While at work I could listen to my favorite podcasts or pastors, catch up on news but also listen to my favorite online personalities go deep into prayer or scripture. I could write, take time to blog or use my creativity as an outlet to keep my attitude positive and feel good about myself.
Most importantly, I could reflect on my spiritual health, pray, and ask God for the strength I needed to push through, but also to surrender my need for rest to him.
So I take advantage of the times that I have to recharge and get grounded once again in the knowing that my God carries me when I’m weak, refreshes me when I’m tired, lifts me up when I am depressed or feeling bad about my situation. He instructed us to come to Him when we are weary and heavy burdened so that we may have rest, not a temporary reprieve but true fulfilling rest. The rest I can experience even in the middle of the night when my eyes are begging for just a few minutes to be closed, I close them as I pray to be restored, and find the strength I need to complete any task in front of me.
Written by John Felageller
John lives in Northbrook, IL with his wife Elizabeth and his son Christopher (ASD), and is currently an Elementary Teacher at a Charter School in Chicago, IL. He is a regular contributor to Key Ministry’s Special Needs Family blog, and is both a live presenter and on Key Ministry’s Facebook page. He coordinates a Special Needs Dads meet-up in his community and works with several other local Special Needs organizations that serve both parents and children.
Connect with John on his Facebook page here.
Trust Your Mom-Sense!
You are not just a mom! Don’t let others intimidate you into questioning what you know is working or not working for your child. Trust yourself and keep moving forward. Written by Sarah McGuire
You are not just a mom! Don’t let others intimidate you into questioning what you know is working or not working for your child. Trust yourself and keep moving forward.
I have to admit that sometimes I outwardly went along with the therapist’s plans for my child (shhh, don’t tell her. She really was a good therapist), but when I saw it was resulting in much more frustration on both my child’s and my part on a daily, hourly, basis driving us both to tears and at the same time not resulting in any progress, I set it aside and did other things. We kept the therapists’ weekly appointments to document his progress and I could keep in mind what he as supposed to be working on and maybe try it a few times over the course of the week instead of every hour and see how he responded, if he responded at all. From the therapy, I learned ways to help him when he was ready for it and markers by which to measure his progress. But, at the time, he wasn’t ready for it. It was helpful, but it wasn’t what he needed most at the time.
As his mom who was with him all day every day, it was obvious to me. The therapist couldn’t see it on a day in, day out basis. All the tension and anxiety the therapies introduced and his complete lack of ability to respond how he was asked to respond just made things worse. Instead, I focused on what he could do and built on that and focused other aspects of his treatment apart from therapy.
Yes, there are times to push our kids into things that are difficult for them. They need to be stretched and challenged in order to grow. Sometimes, that will cause tears and frustration. But as mom or dad, you have a front row seat to what is stretching them toward growth and what is pushing them too far and into the breaking point. No, you won’t get it right every time. And sometimes, hindsight will inform you how to do something differently next time. That’s okay. That’s part of the journey. Learn from it and adjust, but let the guilt go!
When a DAN (Defeat Autism Now) doctor insisted on a treatment program with medications that I had seen cause significant regression in my child and refused to treat him without him being on those medications, I pulled my son out of that doctor’s care and went back to the drawing board to figure out how to do accomplish the same treatment goal another way. And I did it!
Moms, Dads, you are amazing advocates for your child! You know your child better than anyone. If plan A isn’t working or is causing too much angst, there is plan B, C or D. Even if plan B, C, or D doesn’t exist yet and you have to figure it out. Take a deep breath, pray, talk with other parents who have been there or somewhere similar and take one step forward. Then another.
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.
It's Not All On You
I didn’t dare move a muscle. Breathe in, breathe out, quiet, shallow, in, out. Don’t move. My son was finally asleep cradled in my arms against my chest. If I could just not move or breathe, maybe, just maybe he would sleep for 15-20 minutes and for that 15-20 minutes there would be no screaming and he wouldn’t feel the pain and I could rest – sort of. Written by Sarah McGuire
I didn’t dare move a muscle. Breathe in, breathe out, quiet, shallow, in, out. Don’t move. My son was finally asleep cradled in my arms against my chest. If I could just not move or breathe, maybe, just maybe he would sleep for 15-20 minutes and for that 15-20 minutes there would be no screaming and he wouldn’t feel the pain and I could rest – sort of.
Once, as a young mom, I remember saying to a more experienced mom, “God has given my son to me to care for and love on this earth. But, he isn’t really mine. He’s God’s. It’s my job to love him well.” She murmured words of agreement as her eyebrows rose and a somewhat sad, knowing half-smile filled her face. It was several years later I learned she had lost her eldest child in an accident many years before, long before I knew her, and I finally realized the significance of that knowing smile.
Somewhere between the time I made that statement and the birth of my second child with the entry of additional needs in our lives I forgot those wise words and the perspective I had once held. Somehow, I took upon myself the weight and responsibility for how my son’s health journey progressed, how comfortable he was or wasn’t, for trying to alleviate his pain, and when I couldn’t, for comforting him and being with him every moment through his pain.
His pain never stopped, so neither did I. I didn’t give myself a moment to rest because he had needs. Do I regret being there for him, comforting him, and doing everything I could do to help his body heal? No, not for an instant. But, I do wish I hadn’t carried the weight of it on my shoulders, especially to the extent that I never gave myself a break. This dear, beloved, hurting child wasn’t solely my child. He was ultimately God’s child.
Isn’t God so much more powerful than I am anyway? I couldn’t do much to change my son’s situation or stop his pain. But I could entrust him to the One who created him, who knew every one of his days before he was even conceived, who loved him so much He suffered and died for him, who was powerful enough to conquer death, who knows the number of hairs on my son’s head, and collects all his tears (all 24 hours/day worth of them) in a bottle. I could be His arms holding and comforting this precious boy, God’s love in action, but the future and outcomes are in His control, not mine. Sometimes, I could also step back and allow someone else’s arms to hold him while I took a break and got some rest.
If you’re feeling overwhelmed. If you are carrying the weight of your child’s health challenges, diagnosis, and future. If you are so weighed down you cannot rest or take a break, remember this child is God’s child. Ask Him for a way forward, for help in caring for His dear, beloved child. Then, take a step back on occasion and trust.
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.
True Gifts
Can you remember the joy of Christmas morning as a child? The expectation and wonder of it all? Written by Kevin O’Brien
“Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows.”
Can you remember the joy of Christmas morning as a child? The expectation and wonder of it all? I remember waking up ridiculously early on Christmas morning after a late night at my grandparents’ house for Christmas Eve.
It’s interesting being on the other side, waiting, not to get presents, but to give them to my kids.
As I write this, it is four days before Christmas. Last night my wife said that she couldn’t wait for this Christmas because of a couple of things that the kids are going to get. She can’t wait for their reactions and neither can I.
Our oldest has largely achieved that detached high school phase of being somewhat above all of this. I think that he’s going to be a bit surprised. Sierra is too young to have given up the wonder. Nathan, well, Nathan is the best of us all when it comes to presents, there can be absolutely no doubt.
It’s been that way for Christmas and birthdays as long as I can remember. Nate cannot suppress what he is feeling—good or bad—about anything. He cannot dissemble and make you think that he is patiently waiting, or you got him the best thing ever when in fact he really doesn’t like it. No, whatever Nate thinks, you are going to know. If it’s great he exclaims with glee, grins as wide as he can, and poses for a picture holding the present up in front of himself. If the present is okay but not terribly exciting, the process is much quicker, and he’s on to the next one.
One Christmas, we got him a movie that we knew he liked. As soon as he opened it we knew that we had made a miscalculation. “That’s the wrong present!” he loudly protested with no concept that he was making his mother feel bad, that it is not polite to say such things, or that he is supposed to be grateful that someone wanted to buy him something they thought he would like. Concrete thinker. Concrete problem. Concrete solution. Let the world know that this is not right. And I do not exaggerate by much when I say world.
We thought that we solved the problem by getting his older brother to trade DVDs with him: Monsters Versus Aliens for Kung Fu Panda. It seemed to work. The day went on; I seem to recall that it got better. At least we stopped the immediate crisis. And then it started.
For the next several weeks Nathan decided that he needed to tell people that he got the wrong present. After the initial shock, we could laugh about it. When he tells grandma, who adores him and does a very good job of getting him to act appropriately, it’s one thing. You can smile and have a laugh because it is delivered in such a matter of fact manner.
It feels a lot different when he decides that he needs to tell the random clerk at the store, or the librarian, or someone at church—people who have no context or clue who he is, much less why he would be volunteering such information. It can get a bit embarrassing. Disheartening. And while there is no rational need to do so, you feel like you have to explain the whole story. What happened, and the fact that he has autism, so he’s still obsessing in it two weeks later. Three months later. Occasionally over a year later. It’s amazing how long things stick.
The difference between Nate and me is that I can hide my disappointment. He can’t roll with the punches or make someone think that the gift they thought was so great was indeed just that great. I can. All the while I am wondering what on earth they were thinking. This? Really? I got the wrong present! Perhaps I am not so different from my son.
I’m going to go out on a limb and say that I am not alone. On my worst days I must admit to wondering if James 1:17 is true. Does God really give us good gifts? Perfect? Really? I don’t think so. Have you really noticed what my son is going through, God? Do you really care? How is this child a good gift? My worst days. I love my son, let’s be clear. But the stress and the anxiety and the sheer exhaustion of it all pile up. And I know that I don’t have it that bad. I know people who have to deal with far worse things, far more taxing things.
But I said that Nate is the best of us at presents. The DVD episode was certainly not that. But the same honesty regarding that one gift is the reason he is the best. When Nathan turned nine or ten, we had a party with my family for him. He was opening presents, making out like a bandit, when he came to a specific present. The present that everyone in the room knew he was getting. The present he gets every year.
Every year Nate gets paper and markers because he loves to draw. Everyone knows he’s getting them. Everyone knows that he loves them. None of us were prepared for his reaction.
The wrapping paper came off and I could hear the smile on his face even though I was standing behind him. He read the label with glee, “Plain white paper! My favorite!” Yes. You read that right. A ream of printer paper. One with a label that literally read “plain white paper”. I think that everyone in the room about died laughing. I almost wept.
The truth is that Nathan is a gift. A gift unlike any I could have imagined.
I’m not much for surprises, but sometimes the best gifts are the ones that surprise. The ones that don’t cost a lot or come in fancy boxes. They aren’t things at all. Read the entire first chapter of James and you’ll get an entirely different sense of what is important and what a good and perfect gift might look like.
Our wants and desires change, they shift like shadows. What we want one minute is not what we want the next. Most of the time we don’t even know what we want. We need to learn to trust our Father of heavenly lights. To see that the gifts He gives are the best kind. He is the one who redeems us in our imperfections. Who uses the very things that are our weaknesses to confound the wise (and us, I might add). Who shows us what He can do with our imperfections and those of our autistic children.
My other children love their presents (mostly). But neither of them can hold a candle to Nathan’s wonder. He is brutally honest. He can be embarrassing in his reactions in front of strangers. And then you get hit right smack between the eyes with the two by four of “Plain white paper! My favorite!” And you realize that the best gifts are not the ones you thought they were.
And that is why Nate is the best at getting gifts. (Just wait ‘til he sees the Lego mug!).
Written by Kevin O’Brien
This article is a shortened version of Kevin O’Brien’s writing in Life On The Spectrum. To read more from Kevin and the other authors of Life On The Spectrum check out www.lifeonthespectrumbook.com or order the book below. 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. Their honest, raw and heartfelt stories show how God is at work in the real-world struggles of families impacted by autism.
