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

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

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

Joy.

Loss.

Love.

Grief.

Wonder.

Fear.

Gratitude.

Guilt. 

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

Lesson #1: Enjoy your Child

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

Lesson #2: Make Room for Grief

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

Lesson #3: Put on your Mama Bear

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

Lesson #4: Anticipate Adventures to Come

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

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

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

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

how will he not also graciously give us all things?

Romans 8:32 (NAS)

Written by Jolene Philo

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

Beyond Labels: Seeing the Beauty in EVERY Child

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

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

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

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

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

1. Your child is created in God's image

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

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

 

2. God sees beyond physical limitations

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

– 1 Samuel 16:7 (NIV

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

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

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

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

4. We are all equal in Christ

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

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

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

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

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

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

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

~ Isaiah 40:11 (NIV)

Written by Jonathan McGuire

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

The Days Are Long, but the Years Are Short

“The days are long, but the years are short.” 

I repeat this phrase while I sit on the couch listening to my 7-year-old grandson read for a half hour every evening.

Each time he turns a page, he says something like, “Wow, Grammy! What do you think that is?” or “I wonder what will happen next?” He ignores the words on the page and launches into several winding, imaginative explanations.

My grandson really, really likes to talk. And use his imagination. As for the reading part? Not so much. 

Which is why I eventually have to suggest, “Read the page and find out.”

He follows my suggestion––he can read more fluently than he believes––and finds out. Then he turns the page and begins the same process all over again. 

To contain my impatience, I whisper to myself, “The days are long, but the years are short.”

One evening as we read, my mind wandered back to when our son was young and medically fragile. When complications arose––maybe he had a fever, refused to eat because of an oral aversion, or vomited his food because of an esophageal blockage––our days were very, very long. 

Should we wait to see if he got better? Or worse?

Could we wait until morning to go to the doctor? Or call him right now?

Should we race to the emergency room in our car? Or should we call the ambulance?

Not only were the days long, but also the nights. 

When our son turned four I told my mother, “The years since he was born feel like a lifetime. Maybe it’s because we haven’t gotten a complete night of sleep since he was born.”

Mom smiled and said, “The days are long, but the years are short.”

My grandson turns a page and explains, “Look at that shark! What’s it’s name?”

His words draw me into the present. I smooth down his honey-colored rooster tail and inhale his little boy smell. He leans into me, and together we sound out a challenging word. He looks up at me and smiles in triumph. 

“I’m getting the hang of this, Grammy!”

He is getting the hang of reading, and I am getting the hang of the fickleness of time.

I think of my son, whose early years required several corrective esophageal surgeries before he got the hang of eating and swallowing. He’s a middle-aged man now, healthy and independent. 

Where did those years go?

I look down at my grandson and smile, 

grateful for this precious half-hour together, 

grateful for this reluctant reader’s victory over a pesky word, 

grateful his dyslexia that brings us together each night,

grateful for the joy of being part of his life, 

grateful for the wisdom gained through the special needs of my son and my grandson.

The days are long and the years are short, and in the eyes of God, both have eternal value.

Written by Jolene Philo

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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 Sing!, the second book in the West River cozy mystery series, which features characters affected by disability, was released in November of 2022.

Spiritual Warfare

Until recently, I felt like spiritual warfare was a way of over-spiritualizing experiences in life and the World.  It felt like people would claim spiritual warfare for a flat tire or the things that occurred to make someone late for bible study.  It felt hooky to me, but I knew there was truth to this idea of the enemy, at work against what God was trying to accomplish in my life. 

Early on in my time on church staff, some interpersonal conflicts began to impede the ministry work.  There was an unresolved tension and no real reason for these conflicts.  A wise friend/coworker gently guided me through the idea that the enemy was working in these places.  That his goal was to derail our ministry efforts and the harder we worked for the good of God, the harder the enemy would attack.  Until you feel these attacks first hand, it can feel like over-spiritualization of experiences of people giving power to the enemy for coincidences and inconveniences.  

Having the knowledge and tools to fight this spiritual battle is critical to all believers.  We are fighting a battle against an enemy, the bible makes that very clear.  Ephesians 6:11-12 states:  “Put on the full armor of God, so that you can take your stand against the devil’s schemes. For our struggle is not against flesh and blood, but against the rulers, against the authorities, against the powers of this dark world and against the spiritual forces of evil in the heavenly realms.”

I should not be surprised when experiencing these attacks or seeing others experiencing spiritual attacks.  I believe worship is one of our battle weapons in the fight against the enemy. I find the words of worship music can drown out the lies of the enemy or send him running.  There is a song that I love that I feel sums up the protection God has for us, the weapons we have and what we are fighting. The song by Upperroom “Surrounded” starts out by saying clearly that God has prepared us a table in the presence of our enemies, praise and thanksgiving are my weapons. It repeats over and over “When it looks like I’m surrounded, I’m surrounded by You.”  The entire song feels like a defense to the attack of the enemy and it’s true, we are not alone in these battles, we are surrounded by the Spirit of God.  

In learning more about what the enemy is trying to do in my life, directly in opposition to what God is trying to do, I felt ill equipped. Knowing the more I pursued God’s love for me and my family, the more the enemy would be aware of my weak spots and try to enter.  My marriage, my kids, the ministry work I was doing, my friendships and more are all at risk for an opening to be seen by the enemy and to have him step in.  It only takes a little space for the enemy to get into our minds. The hard part is then removing him from these spaces and places in our life.  I am by no means an expert or even remotely equipped on this topic, but have come face to face with the enemy in my life.

Most recently, I remember a few months ago 2 very dark days filled with calculated spiritual attacks.  My kids were impacted, husband, dog, my own well being and the enemy even terrorized my dreams.  These two days were draining and difficult.  I felt like my world was in a delicate balance and one more thing added to the day would send it into complete implosion.  At the end of these exhausting days of what truly felt like a battle, I knew without a doubt that God ruled supreme over all.  He is on his throne and in control.  

We could see in the days leading up to this spiritual battle that tension was building.  We began to put on the armor of God and prepare.  We have a dedicated prayer team that we email out regular prayer requests to and we immediately sent an emergency prayer email giving the details of what was going on.  Immediately people all over the US and world began praying for us.  We guarded our hearts with truth and went into these challenges with immense peace, very little fear and a lot of unknown. How would our lives look different if we called on a group of believers more often to intentionally pray over our needs, our battles and our need for strength in these times.  What would a challenging day, doctors appointments or IEP meeting feel like if all over the nation we were calling on each other to offer critical prayers on our behalf?  I have to believe it would make a huge difference on the orientation of our hearts and potentially the forces at play in our lives. 

Not every day necessitates this full on warfare, but every day has opportunities for the enemy to take hold of pieces of our life.  Keeping close to the tools that will reorient our focus will guard against any effort of spiritual attack.  Some ideas I have to combat ongoing, insidious attacks are playing and worship songs, praying out loud, establishing healthy, regular rhythms with God to remain in step with His will for my life and memorizing scripture.  Being in a practice of pruning away the things in my own life that take away from God’s glory is also important.  Once the enemy is in, it is difficult to get him out.  

I know that the enemy will use any possible place to threaten the work of God in my life. Nothing is safe from him, unless under the protection of Christ. There is another worship song that my daughter and I love that we often turn on loud by Elevation Worship, “See a Victory” . The chorus goes, “Cause my God will never fail. No, My God will never fail. I’m gonna see a victory, I'm gonna see a victory…” It goes on repeating this truth, that we WILL see a victory because God never fails. His power is perfect and stronger than any demon or Satan. Be aware of the enemy’s schemes and be ready to support those who are impacted by his evil plans. I know my family will come under attack again and hope the body of believers will circle around us in offering a protective blanket of prayer. We will remain firm in the truth that God wins, always.

Written by Naomi Brubaker

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

Hold On Tight

If I could go back in time to those days before his birth, and have a chat with my pregnant self,  I would tell myself this about the parenting journey I was bound for:

1. It will be different than what you are imagining.

2. You will know, but not quite understand, the moment that you lock eyes that first day.

3. You will also instantly know that you are his person.

4. You are strong enough to rise to the occasion. 

5. You were meant for it, and you’ve got this.

6. God will lead you. Hold on to Him tightly.

7. Stop yourself the very first time you read what other babies his age are doing and your stomach drops, because he isn’t doing it yet. Just rock in that glider and stare into those beautiful brown eyes.

8. If you google that missed milestone one time or a million times, and get lost in your mind with worry, that will do nothing to change the outcome. Instead look at how intently he is listening to your voice as you read Goodnight Moon in his sailboat nursery. The worry is useless, and the outcome is not anything to fear.

9. When he begins to roll his toy cars in such a way that you feel it is less play and more some type of visual stim, a word you won’t learn for a few years yet, think about how happy he looks.  Make note of these things, but don’t fret. Instead, choose to enjoy the smile on his sweet little toddler face.

10. When you notice incredible skills happening far too soon in comparison to others, just marvel in it. Don’t read every article written about it, wondering why or what it means that he can do it.  Your nights will be far better off spent sleeping while you still can.

11. At a certain point there will be no sleep, so grab every wink.

12. When the sleep gets hard, you will manage. 

13. In case you already forgot number 4, you are strong and capable.  

14. Your child is also strong and unimaginably capable. Perhaps the strongest, most resilient person you’ve ever known. You’ll see.

15. When he struggles to sit quietly on the mat at library story time, just go to the park instead. 

16. When he runs from you and others say things like, “He’ll come back, just call his name.”, trust your gut and RUN.  He’s not coming back.

17. Start looking for the angels sent to meet him on his path. They are truly everywhere you turn. You will be amazed. He will recognize them right away.

18. You will see him form the most enduring bonds with these people.

19. Don’t waste a moment’s thought on those not meant for him.  He will recognize them, too.  

20. He will have some difficulties, yes.  Who among us is granted a life without them? Focus on the many triumphs instead. 

21. He will be completely misunderstood, as will you. Ignore this. Make no apologies and overlook the judgement of others. Live these days focused on the audience of your one heavenly Father.

22. He will also be completely embraced and accepted. It will bring glee and immense gratitude to your heart each time.

23. You. Will. Be. Enough. Don’t question that fact, but know that your faith, family and dear friends will also carry you when you need them.

24. Begin this prayer immediately. Pray for God to lead you.  Tell Him that you’re listening and ready to follow his plans for your little boy.

25. Walk next to your son, hand in hand, through it all.

26. You’ll learn soon that he’s come here to teach others things like compassion and empathy and humanity.  He’ll teach them some about fonts and logos, as well, but that won’t make sense to you for a couple of years. 

27. Your baby is perfect. One day when he is 8, he will look into your eyes and plain as day, give you every answer you’ve been searching for.  His self-awareness and self-acceptance will put your mind at ease in an instant and bring a calm to what at times will feel stormy.  It will be one of those beautiful moments in life that you want to capture, that you want to freeze inside of. 

28. Always remember that this is his life to live. He was sent here with a unique purpose just as you were. Remind yourself of that in the times when you feel like you must find all of the answers.  

29. You will grow through this time.  Your heart will grow. Your empathy will grow. Your heart’s desire to help other children will grow even bigger than it already was, and now with an entirely different level of understanding.

30. Lastly, it will all be okay.  I promise.  It will be better than okay.  His life will be amazing and full and happy and fun and he will know the abundant love of his adoring Mother.

Written by BreAnn Tassone

BreAnn is a wife and mother to two beloved children.  Her 8 year old son is twice exceptional and has been diagnosed with PANS/PANDAS, and her 3 year old daughter is his most incredible advocate.  They both bring joy to this world in their own individual ways. BreAnn lives with her family in central Virginia.  She is a former Special Education teacher and serves as a volunteer at her church within the special needs ministry.  She is a homeschooler and coordinates groups and events within her community to support the childhood experience of her neighbors and friends. It is her conviction that all children benefit when all children are included, accepted and can live this life learning from and supporting each other.

Which Christian Parenting Resources are MOST helpful?

In the last blog post, You’re Grounded!!! I alluded to how the first few years of Jonathan and my parenting journey and how we were doing discipline was NOT working. We were following the best of the parenting classes from Bible school and church and books recommended to us and getting a kid who became angrier and angrier. We knew something HAD to change…and it was us and how we were parenting, not our kid.

Today, I share with you:

1. Resources we have read and tried

2. Resources that dramatically changed our and our kids’ lives for the better

Disclaimer: our kids are currently teenagers. We are in the midst of this parenting journey. We are learning too. Currently, our teenagers are delightful. They are a joy and pleasure to be around (most of the time!). We do not fit the stereotypical picture of regular teenage/parent conflict. I’m loving this age and stage and hope this type of relationship continues. However, we don’t know how our kids will do in adulthood or what choices they’ll make once there or at any point on their way there. We pray for wisdom as we continue on this journey.

The following resources are loosely listed from least helpful to most helpful for our family. We’ve read and studied more, but these are the ones that came to mind.

Resources we read, studied, &/or applied early in our parenting journey that we may have gleaned some from, but didn’t get us where we wanted to be in our parenting:

1.     Don’t Make Me Count to Three by Ginger Hubbard

2.     Growing Kids God’s Way

3.     Dr. James Dobson’s books

4.     Child Training Tips by Reb Bradley

5.     Love & Logic by Jim Fay & Charles Fay

6.     Give Them Grace by Elyse Fitzpatrick

7.     Shepherding A Child’s Heart (the anger management/training/maturity ladder was helpful) by Ted Tripp

Resource that we think are excellent, the last 2 have heavily influenced our parenting:

1.     Parenting by Paul David Tripp

2.     How to REALLY love Your Child by Ross Campbell

3.     Sally Clarkson’s books (there’s more I need to read!!!) & podcast

4.     Sharing Love Abundantly In Special Needs Families by Gary Chapman & Jolene Philo

THE #1 most helpful and robust parenting tool we have found:

As a side note, you can listen to our podcast interview with Jim and Lynne here. What resources have been helpful to you in your parenting journey?

Written by Sarah McGuire

Sarah McGuire  is the Mom of two boys and co-founder of Hope Anew, a nonprofit that guides parents to Christ-centered hope and healing. You can follow Hope Anew on Facebook here. You can also check out Hope Anew’s Online Community here!

Due to COVID-19, Hope Anew is waiving all membership fees for the community!

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Hope Anew is an Amazon Affiliate and as such earns income from the affiliate links listed above.

The Parenting "Long Game"

PARENTING can be a loaded word- it’s personal and relational and it comes in long stages.  There is joy mixed with fatigue and confusion.  It seems like, as a parent, we are often experiencing the polar ends of emotions.  Moments of hope are fleeting and followed by despair.  We are on mountain tops and sinking into the valleys in a matter of minutes.  You can read many parenting books and blogs, listen to podcasts and talk to professionals, as well as trusted friends and still feel like you are in the dark.  Sometimes we end up more overwhelmed than before we started looking for answers.  All this messiness is because parenting is personal and our kids are each unique. Additionally we bring our own mixed up parenting perspectives into the relationship to add to the emotional confusion.  Even within a family unit, parenting multiple children can look very different.  

On top of all of that, we take the outcome very personally.  We place the value of our parenting in the goodness of our children.  Am I an effective parent because my kids made it through dinner in a restaurant without making a scene?  Did my children exhibit kind, respectful behavior at a friend's house because I taught them all the polite things? And on the negative side of things; is my child going to struggle forever because I am failing in parenting?   The idea that our worth as a parent is a result of their good or bad behavior is FALSE.  The two ideas are not connected.  The true source, of both our worth and our goodness, comes from the Father, the same is true for our children. 

I have 3 girls, ages 8, 6 and 3, and parenting each of them the same way would be ineffective and unfair.  Parenting becomes personal because each child is unique. We have done a lot of ground work to establish the rules and values of our family.  Although the house rules and family values are the same, the way they have learned and experienced this varied.  We have gone through a lot of hard work to get here and now the lessons are learned through them trying out what we have taught them and feeling the consequences of their actions and independence. 

Take a look at the long game of being a parent.  The goal is not that they put their toys away, or tidy up their room, or have impeccable table manners.  The goal is that they have self-respect, compassion towards others, take responsibility  and can positively contribute to their family, community and the world through their own unique giftings. 

This long game perspective makes parenting highly relational. 

I felt like my family had a season where we were losing our relationships for the rules.  There was very little joy or fun and it was a battle over who was more persistent. The result was negative and loss of the relational ground we needed to be building with our daughters. Slowly that stage of parenting has shifted as well as our perspectives and their needs. 

What feels like we are in a hard phase that will never end; slowly, we are actually moving to a new place almost overnight and there is light.  I have appreciated the 4 phases of parenting outlined as Commander, Coach, Counselor and Consultant by “Focus on the Family”.  I can recognize that when it felt like a battle ground in our house, we were likely in the middle of the commander stage with 3 young kids. And now we have progressed to some coaching and some commanding as the kids have aged.  Don’t lose the relationship over the rules, don’t linger too long in the a stage, push yourself and your child to stretch when the time is right.  Don’t be afraid to return there when needed. Always remembering, the character and care of our heavenly father is being extended to us in these stages as we navigate life as well.  

After months of being “off” my parenting game due to moving, COVID, virtual school and so many other disruptions I feel like I have had to go back to the “commander” stage more than I would like.  I try to balance this with intentional time to build the relationship individually with each of my kids.  Today, we had a longer day of chores, but focused on the relationship as I took two daughters to get their nails done and later made a secret dessert for the family with another.  I feel more effective as a parent when I have made these relational efforts with my kids.  And I feel more effective as a parent when I make relational efforts with God. 

Invite God into the struggles and joys of parenting by prayer and worship.  He wants to share in this process, as He is a supportive, loving, present father.  

Written by Naomi Brubaker

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

If you build it they will come. They really will.

It has been our experience, as a special needs family, that unwanted isolation can slowly creep in.  And I think it comes in three distinct forms. 

The first being an element of self-isolation. 

There can be anxiety surrounding unknowns, and there can be comfort in sticking close to home and routines.  At home, you can control your environment. Also, some things that typical families are doing just don’t work for us.  For example, we are not sitting in the bleachers at little league games chatting with and growing community with other families. Before you know it, even very social people can kind of step back from the social experience they desire.

A second way isolation can sneak in is purely through absenteeism. 

Individuals with special needs sometimes also have health struggles.  Not to mention the many appointments per week for different types of therapies and the like.  That is the case in our family, and we are absolutely the family that has to cancel sometimes.  Okay, a lot of times. We are not always able to attend things that would grow relationships and foster more social involvement.  

Thirdly, I have seen isolation occur for our family when others operate in such a way that we are set aside and isolated from social settings. 

I don’t assume this is ever done with intention.  I even suspect that some very well-intentioned  people would be shocked to hear that they played a role in setting us apart. There is an element of feeling invisible.  Inclusion is a buzzword that you hear about all of the time.  However, the number of times we’ve truly experienced it has been, up until a certain point, fewer than you would think. It is sometimes hurtful, and really not something I even understand.  Yet, as I endeavor to share my true experience, I have found times when it’s clear that many people are just starting the process of learning how to navigate interaction with a special needs family.  As an insider, I would tell them, there’s nothing to navigate. We are just a family. We are a family, just like any other family. 

I decided we would not sit and view life from the sidelines.  I didn’t want my family's story to be negatively impacted beyond repair, due to anxiety, circumstance or the impact of others behavior.   I kicked and screamed, figuratively of course, and put us out there over and over again.  It really felt like grabbing at straws trying to find our village.  I so strongly desired for our family to have a village around us.  I wanted to experience life with other people.  I think there is so much value in “doing life” with others. 

A dear friend saw me grappling with this and encouraged me to create the opportunities that I desired for my entire family.  I also felt those nudges from God.  You know, that feeling that you need to do something and do it now.  That feeling that just keeps coming back again and again until you listen. I was nervous, but determined.  

The first thing I did was start a monthly Mom’s Dinner Out.  I looked about my life, and saw women that I enjoyed being with, sprinkled throughout my week.  There were women that I’d loved for years, including the one I mentioned earlier.  There were women that I loved that had more recently entered my life, and there were women I’d only met a few times.  None of them knew each other, but each knew me.  I knew I needed some connection with other moms.  So, I took a deep breath and hit send on the first evite.  That dinner club met almost every month, or every other month, until Covid put a pause to things.  I cannot tell you how life-giving it was for me.  Each month, a different group of ladies came, and we laughed and shared life for a few hours.  New friends were made. I can’t wait to start back up as things continue to get back to somewhat normal in the near future.

The next thing I did was create a similar experience for my special needs child.  I, again, took a deep breath and posted my idea for a weekly social skills playgroup on nearly every homeschooling and special needs social media page my friend and I could find.  As a result of those posts, I was able to find an incredible special education teacher to lead our group in social skills lessons.  I also found community for my child.  I watched him form friendships. This group led him to make friends that can understand some of the things that his other loving friends can’t fully relate to.  Every child there can just be their true and authentic self, without fear of judgement, that of children or other parents.  I watched as my child, that I knew wanted and needed social engagement, grew in confidence.  As life-giving as my dinner club was for me, this growing group of children is for my son.  

I did one last thing.  As a person who is determined not to let our differences impact our experience, I created a monthly field trip group for all children.  It has grown to include any family that wants to attend.  It is an amazing mix of homeschooled and traditionally schooled children of every age.  There is no setting anyone to the side in this group.  It has brought friends that we never would have met otherwise, and friends that we hadn’t seen for sometime.  It has given us a focus and a place to be.  

I’m thankful that I listened to those nudges from God.  I continually thank my friend for her sage advice and encouragement when I needed that push to go make things happen.   And, now I’ll pass along what she recently said to me, and you’ve heard it before, but this time hear it as it can apply to your life. 

If you build it, they will come.

They really will.  

What do you pray for that is lacking in your family’s current view of life? What nudges have you been getting from God? I implore you to step out of that comfort zone and put yourself out there.  There are other people waiting for you to do it.  There are people desiring the same things you are.  It is my prayer that someone, who may be feeling alone and isolated, will read this and go for it. 

Written by BreAnn Tassone

BreAnn is a wife and mother to two beloved children.  Her 8 year old son is twice exceptional and has been diagnosed with PANS/PANDAS, and her 3 year old daughter is his most incredible advocate.  They both bring joy to this world in their own individual ways. BreAnn lives with her family in central Virginia.  She is a former Special Education teacher and serves as a volunteer at her church within the special needs ministry.  She is a homeschooler and coordinates groups and events within her community to support the childhood experience of her neighbors and friends. It is her conviction that all children benefit when all children are included, accepted and can live this life learning from and supporting each other.

R.E.S.T.

Being a parent often seems like there is never enough time, and often we shortchange ourselves on rest to compensate. Sometimes I thrive on all the hustle and bustle, and other times I feel as though I’m on a speeding train I’d love to make an immediate departure from. The worst part is that sometimes I’m unable to distinguish between the two, propelling me into confusion.  My wife Naomi knows too well, but after I’ve given my best to work and the kids, there isn’t much left for her.  That isn’t fair, or honoring our sacred relationship.  What am I robbing myself of when I deprive myself of rest in all its forms?

Rest.  This is an elusive and mystical word to a parent of young kids, which often makes me think;  “one day I’ll have time for that”  or  “I’ll rest when I’m dead.”  Neither of these views help me give my best to my family.  But I often fall into the trap of pushing myself, keeping busy and just getting the things done that Dad’s need to do.  Do I wear it as a badge of honor?  Possibly, and that is not healthy nor productive. That view is selfish and does nothing to glorify God.  When I can’t be my true (and rested) self, I am robbing the world of the joy God has placed in my heart.  Even if you're SuperMom or SuperDad, be honest, you can’t fake it but for so long.

But I got responsibilities man! Your quick schemes won’t work for me! Yes, it’s a challenge to find rest, or is it?  I think it’s important to remember that Grace through Jesus comes through Him, not through our deeds.  Deeds keep us busy, and we often give too much credit to our works. We spiral into an endless cycle of “doing” in order to prove our worth, and this isn’t just a spiritually manifested issue. 

I can’t give you a definition of what rest looks like, because everyone’s needs are different. But lately I’ve been thinking of an acronym that helps me, and may help you determine how you can weave rest into your schedule, however brief.  Here are my guidelines for R.E.S.T.

Recurring - Make it intentional, and on a schedule that works for you.  Even if it’s locking yourself in the bathroom to escape for 5 minutes (and yes, we have all done it).  Don’t let those little fingers under the door distract you, they will surely survive, as their only aim at that moment is to pull your attention. Setting yourself  boundaries will help you carve out some time.  Isn’t it strange how boundaries can make us more free?  Understanding this has always been a challenge, because as the parent you are always the enforcer.  In my daily rhythm, I try to catch myself “scrolling” and jolt myself into stealing my time back. We all find ourselves scrolling social media, so this is the perfect time to reclaim that few minutes as your own.  I also find that if I wake up before my kids, it’s hard for them to interrupt me during that time.  It’s the absolutely most perfect time of the day, since I tend to be a morning person.

Enjoy - The act of resting should recharge you, which means it should be a departure from your normal routine.  Shock your system by doing something you enjoy, which is something you have probably deprived yourself of as a busy parent.  You will be surprised how even a small burst will recharge your battery. This is a deeply personal choice, dig deep for something God has uniquely placed in your heart. 

Solitary - I’m a social person, so this one is sometimes a struggle for me.  But I find with the constant draw for my attention by my kids, the best rest for me in my current phase of life is often in solitude. It gives me a chance to reflect, which leads to the last and most important part.

Thankful - When you take time away, always do so with a thankful attitude.  You shouldn’t shame yourself while you are taking time away, that will always be self defeating.  The idea of rest (in the form of a sabbath) is deeply Biblical. You can choose to explore any of the scriptures around this topic, but I always fall back on the creation story. If God decided to take a rest, then it’s perfectly fine for you to do so as well! 

As you go about your day, I challenge you to implement these ideas.  Did you notice that it costs nothing?  And that it has no constraints on what you should do, or how long it should take?  You may need to enlist some help for you to carve out a small block of time, this is also perfectly acceptable. It is a process, just make sure that you protect what works for you. Take heart in this, and work on giving a slightly better version of yourself to the world. We are called to let our light shine, so do so with a restful heart.  

Written by Jesse Brubaker

One Simple Question That Can Change Your Life…and the lives of those around you!

Last week I shared that my theme word for 2021 is thankful and to help me toward that goal, I’m listing 3 things I’m thankful for each day. That is one step. But it’s not just a “list 3 things and move on with the day”, checkmark, goal accomplished. Done.

No, in making thankfulness a habit and cultivating a heart attitude of gratitude it is my goal that the act of starting my day with thoughts of thankfulness will then help thankfulness carry on into my day with choosing thankfulness in situations that would otherwise cause irritation, annoyance, depression, discontent, or hopelessness.

Our family is currently living in an RV and touring the country for 10 months while we work and school fulltime. Yes, it’s pretty incredible. But it also means we are sharing one bathroom. One morning last week, I needed to do my hair and plugged in the curling iron to warm, but since my kids hadn’t gotten up and been through the bathroom yet I thought I’d give them a chance before I started on my hair. I have a lot of hair and it’s a 30-minute process. I got them moving and started working on breakfast in the kitchen while waiting for them to quickly use the restroom and vacate it.

 The next thing I knew, one of my sons was showering. He doesn’t normally shower in the morning and I hadn’t expected or anticipated that. He’s also not quick about showing, so my day and planned schedule was now delayed by 30 minutes. My immediate reaction was irritation, annoyance, and criticalness about his thoughtlessness.

 After ascertaining that he had turned off my curling iron and the RV was not about to catch fire from his setting clothes on a hot iron, I recognized my negative emotional state and direction of my thoughts. I asked myself, “What can I be thankful for in this situation?” Immediately I thought of how thankful I am that I have a son who desires to be clean and takes responsibility for his personal cleanliness AND that I don’t have to push, fight, or cajole him into it! What a blessing he is! How proud I am of him!

One simple question to myself and wow, what a change in thoughts and emotions! And, what a different mom that kid had when he got out of the bathroom than if I hadn’t asked myself that question. I know I want to be the second mom and not the first mom on a regular basis and that’s the mom and wife my family wants too. It’s also the daughter my Father will be more pleased with because that’s who He has designed and enabled me to be. Yet, it all came from a simple question and changing my focus.

Who do you want to be? What characteristics do you want to cultivate in your life? Is thankfulness a challenge for you like it is for me? If you haven’t already, we’d love to have you join the Hope Anew Online Community and take part in the January Thankfulness Challenge!

Sarah McGuire  is the Mom of two boys and co-founder of Hope Anew, a nonprofit that guides parents to Christ-centered hope and healing. You can follow Hope Anew on Facebook here. You can also check out Hope Anew’s Online Community here!

Due to COVID-19, Hope Anew is waiving all membership fees for the community!

Confidence of a Five-Year-Old

I want to live with the confidence of a five-year-old.

That thought flitted through my mind while my grandson hauled out his art supplies the day before Halloween.

“I’m turning the kitchen into a haunted house because I just learned how to draw cats,“ he informed me as held up a picture. “I can draw them really good.”

The picture below is one his cats. At first glance, I thought it was a sheep.

He was so confident in his drawing ability, he took a break from creating masterpieces and gave his little sister a tutorial in how to make them.

She was awestruck by his skill. “Your pictures are beautiful,” she breathed.

I was awestruck by his confidence. “How did he develop such self-assurance?” I wondered.

He drew picture after picture, blazing through paper and tape as he hung them from every available space. I could see how the love his parents speak into him every day is building him up.

Tell us how that made you feel.

We love you because you are our little boy.

You’re a good problem solver. You keep trying until you figure it out.

Look at all the things you’ve learned to do.

We are so glad to be your parents.

Even when my grandson is at his worse, and his parents hold him accountable for his behavior, they cover him with kindness and love.

Everyone makes mistakes.

We will always love you.

Have I ever told you about when I messed up when I was little?

Whatever happens, you are our son.

We forgive you.

Every day, in every way possible, this grandson of mine is wrapped in kindness and reminded of his parents’ constant love. The foundation of security they continually reinforce gives him the confidence to learn to ride a bike, to tie his shoes, to ask for forgiveness when he messes up, and to trust that his parents will grant it.

I want to live with the confidence of a five-year-old, and I imagine you do too.

But how can we do that when parenting a child with special needs constantly exposes our inadequacies? When our inability to provide what our kids need makes us feel like failures?

We do it by imitating my grandson. By listening to the words our heavenly parent continually speaks into us.

In Jeremiah 30:3, our Father says “I have loved you with an everlasting love; Therefore I have drawn you out with kindness when his rebellious children were at their very worst.

In Romans 8:32, Paul describes our Father’s love by saying, “He who did not spare His own Son, but delivered Him over for us all, how will He not also with Him freely give us all things?”

In the Old Testament God built a foundation of security under his children. In the New Testament, he reinforced it in the shape of a cross. This security gives us confidence to pursue treatment options, speak up at IEP meetings, connect with other parents, make difficult phone calls, to seek forgiveness when we mess up, and to trust God to grant it.

For the rest of my days, I want to live with the confidence of a five-year-old. Thanks to the example of a little boy who draws cats like a budding Picasso and the word of God speaking truth into my heart, I can. So can you.

Written by Jolene Philo

Jolene Philo is the author of the Different Dream series for parents of kids with special needs. She speaks at parenting and special needs conferences around the country. She recently co-authored Sharing Love Abundantly in Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities with Dr. Gary Chapman. Her blog for parents raising children with special needs and disabilities can be found at www.DifferentDream.com.

Parents of kids with Special Needs – YOU ARE AMAZING!

I was walking up the driveway pondering some of the parents of kids with special needs we know and marveling at the common traits they have and how exceptional they are. I think parents of kids with special needs are some of the most wonderful, amazing people I have ever met.

Here are 5 reason why:

1. They have their priorities straight. So much of America’s population, even Christian, Bible-believing, church going population is about achievement, looking good, having fun, wearing the right brand of clothing, being cool and keeping up with the Jones’. If you can’t do that or don’t care to do that, you kind of disappear from being accepted and included.

   As a group, the special needs parents I have met have learned that relationships, loving other and being there for each other in hard times matter more than anything else next to clinging to God. Yes, they love a good night at the movies and wouldn’t turn down a trip to Dollywood. After-all, Dollywood has a sensory room for when junior hits meltdown, which can make the trip a possibility.

2. They have learned to face difficulties. Challenges have become a way of life. Parents of kids with special needs are the strongest, most determined, loving, ferocious (mama bear, anyone?) group of people I’ve ever met. Daily life is difficult to say the least. Some seasons require just living through the next minute or hour, forget planning for tomorrow, next week or next year. They are masters at flexibility and changing plans as navigating around obstacles has become second nature.

3. They see value and worth where others see inability and hardship. While looking in from the outside, others see children or people who can’t walk, can’t talk, look different, are challenging, need help, take resources. Parents of kids with special needs see the most treasured people in their life who give unconditional love, bring joy, work harder than anyone to succeed at the simplest of tasks, get delight from simple things that others easily overlook, and a myriad of other qualities. Just talk to a parent of and adult child with special needs and you’ll likely hear how their child with special needs has blessed them more than they ever anticipated.

4. They never give up. Yes, they get weary – very weary. They may want to quit – for a day in order to nap and rejuvenate. They may want things to be easier, but when it doesn’t get easier, they still don’t give up. This is their child, whom they love dearly. Spouses may walk out. Parents and in-laws may criticize and belittle. Friends may desert them. But, they never quit on their child. They do what is within their power and resources to help and love that child to the best of their abilities.

5. They turn hardship into blessing for others. It may take a few years because those early years they are just barely surviving, and they may go back to survival mode here and there as their kids get older and hit different challenges. But, once they get the hang of things, they start helping other parents of kids with special needs. I’ve met a mom who started an entire company of patented weighted blankets that started because of her daughter’s special needs, and my son has benefitted from her blankets. I’ve met a mom who started a nonprofit helping others learn how to rest and rejuvenate in the midst of great pressures, duties and stresses because of her own journey as a mom of multiple kids with special needs. I’ve met many parents of kids with special needs who write and speak to encourage and equip other parents and to church ministry leaders to help them be able to reach out and help more families. I could go on and on about the incredible things parents have done to help others.

That’s my husband’s and my story too. Both of our backgrounds are in counseling. We were missionaries and he was doing trauma healing work in a refugee camp in South Sudan when he saw the correlation between the trauma and questions the refugees were struggling with and the challenges he and I had experienced as parents of a child with special needs. When he got home to the States, he shared with me and as we talked to other parents the need was obvious. We couldn’t find an organization that was addressing it, so a few years later we started Hope Anew.

Moms and dads of exceptional kiddos, we applaud you and we think you are amazing. I know most days you struggle to make it from morning to night and some of you struggle to make it through the night too. I know you are barely hanging on sometimes. I know your heart wrenches as you watch your child struggle daily with the simplest of things. I know your heart weeps when you can’t provide something that will help your child. I know your heart leaps and sings when they conquer a task they’ve worked at for years. I know it’s a tough road. But I also know you have risen to the challenge and are making all the difference in the world for your child. Thanks for being an amazing parent.

You are our heroes!

Written by Sarah McGuire

Sarah McGuire  is the Mom of two boys and co-founder of Hope Anew, a nonprofit that guides parents to Christ-centered hope and healing. You can follow Hope Anew on Facebook here. You can also check out Hope Anew’s Online Community here!

 Due to COVID-19, Hope Anew is waiving all membership fees for the community!

Stages of Parent Burnout

So did you take a break last week and ask yourself if you recognize the signs of burnout in your life? Some of you just thought, “I didn’t need to pause to know I’m burnt out.” Others of you are thinking, “I’m good. In fact, I think I will make cupcakes for our therapists when I can get out of the house.”

Did you know that you don’t just wake up suddenly not wanting to be a parent or not wanting to get out of bed. Burnout happens gradually.

How many of the following points resonate with you?

• Having a child with physical or mental health challenges

• Perfectionism: feeling you need to be the “perfect” parent at all times

• Lack of support from spouse

• Both parents working outside the home

• Financial concerns

• Not enough support from outside the family (childcare, extended family, etc.)

• Finding it hard to ask for help

• Over-scheduled kids

Many of us can look at that list and can easily circle between a third to half of the points and even come up with additional points. As the stressors increase, we become more at risk for burnout. This burnout can range from mild to severe.

In her podcast episode on Parental Burnout, Krista Maltais describes the severity of burnout as follows.

Mild Burnout: Mild burnout can start with some situation that is outside your normal that causes extra stress. This can be something as basic as caring for a child or spouse that is temporarily sick. These symptoms may include, short temper and/or limited tolerance, foggy-brain, heightened sensitivity to their emotions and environment, and is usually accompanied by disruptions in sleep patterns.

Moderate Burnout: A parent who is experiencing moderate burnout, perhaps due to prolonged sleep deprivation or other stressors (such as finances, lack of childcare, limited opportunities for self care, etc) may begin to experience additional physical symptoms such as headaches, confusion, forgetfulness, upset stomach, anxiety/depression, feelings of isolation and/or overwhelm. As burnout sets in, communication with others also tends to break down which can lead to an increase in conflict, misunderstandings, etc, especially with the partner.

Severe Burnout: A parent with severe burn out due to long-term exhaustion, stress, lack of physical/emotional/logistical support, and/or physical/mental health complications, may exhibit the above-mentioned signs as well as hormonal imbalance which can further cause a loss of sex-drive, insomnia or dis-regulated sleep patterns, and additional health problems. Burnout symptoms may also present as obsessive compulsive tendencies or a multitude of uncompleted/avoided tasks due to overwhelm.

The first step in overcoming burnout and preventing burnout is the same. You have to recognize the stressors in your life. 

Next week we will look at steps to preventing and overcoming burnout. In the meantime, if you haven’t done it yet, download our free “5 Minute Vacations” guide and check out our friends at Run Hard Rest Well. That will get you started in the right direction.

If you find yourself in this severe state of burnout and are having suicidal thoughts, please seek immediate professional help. The number for the suicide hotline is: 1-800-273-8255.

“I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.” ~John 16:33 (NIV)

Written by Jonathan McGuire

Jonathan McGuire  is  the father of two sons and the co-founder of Hope Anew, a nonprofit that comes alongside the parents of children impacted by disability on a spiritual and emotional level. You can follow Hope Anew on Facebook here.

 

Hope Anew has launched the Hope Anew Online Community and would love to have you be a part of it! You can learn more at www.HopeAnew.com.  Due to COVID-19, Hope Anew is waiving all membership fees for the community!

5 Simple Activities To Talk About Big Feelings

Covid-19 has stirred up some big feelings. What is happening in our own communities and around the world is so very unexpected and unusual it is difficult to work through the emotions that have come along with all this change. Talking about feelings, naming them and acknowledging them together can be incredibly helpful at times like this. But where can we begin?

Knowing where something hurts, or what emotion is being felt doesn’t come instinctively to some members of my family and I find myself reaching for creative ways to get the conversation going to help me to support my children through this time where I’m sure they’re wrestling with huge emotions – fear, disappointments, worry, uncertainty in all the changes, helplessness, out of control. Talking together gives a chance to bring myself alongside and support more closely, and for us helps us to pray more specifically having talked about how we’re doing.

Here are 5 simple activities to help us talk about big feelings:

1. Out of control get a large piece of card or paper and draw a big circle in the middle. Using old magazines to tear out words and pictures, and pens to draw and write fill the circle with things you can control and outside the circle with things out of our control. Picking one of the things in our control that we could act on can even bring some relief to the big feelings.

2. Body mapping – make gingerbread cookies talking about what each part of your child’s body might be feeling like right now. While they’re cooking maybe draw round the cookie cutter and mark the parts of the body that feel different (like butterfly tummy, or aching head) and be detectives together to work out what emotion might be making our body feel that way.

3. Playdough faces – use Playdough to make faces with different expressions. Make one for how you are feeling today.

4. Color– Get out some paint and paint those feelings – what kind of character are they, what do they look like, what color are they?

5. ·Charades– play emotion charades, taking turns to act out and guess emotions. Have a good laugh together and then chat about which one each of us have felt recently.

I hope these ideas are as useful to you as they have been to us. These are unsettling times for us and our children and anything that can help me to stay closely alongside, ready to help and support seems to be a worthwhile thing – I guess chatting with them about their big feelings is inside my circle of control!

Written by Cathy Porter

Cathy Porter is  a disciple of Jesus, a mum, ordained and a vicar's wife (in the Church of England), a writer, a creative, a blogger.

Cathy and her husband, Andrew, have 3 children. Her two girls both a diagnosis of ASC. You can follow the ups and downs of family life & faith on her blog: www.clearlynurturing.wordpress.com.

It is Cathy’s heart to encourage families to share in the adventure of faith together, especially families beautifully shaped by ASC. She loves to write stories that make the reader think, ask questions about what we believe, and help the reader to discover what the Bible has to say about God and friendship with him. 

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.

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.

Warrior Parents

The Lord will fight for you; you need only to be still.

~ Exodus 14:14, NIV

I really should have taken up kickboxing, or just plain old boxing, or something involving a punching bag. I guess I still could. If I’d known all the fighting—or what some prefer to call “advocating”—I would need to do for my son Luke, I just might have.

Luke had just turned three when he was diagnosed with autism, and that meeting with Dr. Davis, the neuropsychologist, was devastating. My mom came with me that day because Mike had to work, and I remember how mom and I wanted a plan: “Do XYZ and he will get better.” The doctor did give us a plan that included preschool through the school district, Applied Behavior Analysis (ABA) and speech therapy (Luke was talking at that point), but she said it was hard to say what the results would be. After many tears on my part and much reassurance and what I thought was denial on Mike’s part (I was wrong about that!), I hit the ground running. ABA, check. Special needs preschool, check. Speech therapy, check. Back then I didn’t realize that becoming a warrior parent would be required.

Instead of gaining more speech (he had about seventy-five words and some two word phrases from age two to about three), Luke began losing speech until we were down to one word: More! And then that disappeared too. He’s non-verbal now although we do hear from him occasionally. When he is mad, we often hear a loud “NO!”

Luke’s experience in our school district’s early childhood program was awesome. We were so thankful for his team there and that they had a class specifically for kids with autism. So kindergarten came as a complete shock—and not in a good way.

Before school started that fall we set up a time for Luke, Ana (his home therapist) and me to visit the classroom. This was a classroom specifically for children with autism and it was run through a co-op of another school district. His room had a new teacher. I knew we were in trouble when his teacher said, “I’m so glad you brought me this information. I really have no clue what I’m doing.”

Um. What? Come again?
And I’m sending my precious boy to your class, why?

It turned out to be a place where Luke and the other children weren’t taught anything. Where none of the plans were followed, no IEP upheld, and no data taken. So it was time for some fighting on my part. And I wish I had stepped in the ring sooner.

Finally, in February, after a tip from a friend whose son was in the same class, we hired an advocate and got him out of there. In April of his kindergarten year, we placed him at a school for students with autism called Giant Steps, for which our school district pays. It’s a much better place where the staff is actually trained in how to work with folks with autism.

But this didn’t mean my fighting days were over.

One of the hardest, most emotional battles to fight can actually be with our churches. Thankfully, our church is growing in the area of special needs ministry, but not without tears and struggles littering the path. It hurts.

Jesus reached out to those on the margins. He spent time with them, healed them, and had compassion on them. Each of His children is an important part of His body, and He wants them to be able to use the gifts He has given them. When His children with special needs are missing—in some sad cases even asked to stop coming to church—His body is incomplete. It’s a huge mess and really tough when the church is slow to follow His lead. When the families who need extra support and love are rejected, it makes me so mad and so sad.

I love the television show “Parenthood”. Kristina Braverman, one of the characters on the show, has a son, Max, who is on the autism spectrum.

Watching one episode, I got teary when she said this about caring for a child with autism: “What works for some kids doesn’t work for all kids. . . . I feel like the system is broken. . . My husband and I have fought the system time and time again to make sure he gets what he needs, that he’s not overlooked. . . . My son, Max, is a fighter. . . . On behalf of Max, I’ve become a fighter, too.”

For those of us whose loved one is nonverbal, I think we feel what Braverman describes even more acutely. Since Luke can’t talk and tell me what is going on, it’s a huge act of faith to entrust him with others, when I’m not with him. If I find out that something is off in the way he’s treated, my mama-bear response can be quite loud and aggressive. But isn’t it true that we stand up for those we love, just like God fights for us?

When I remember that the Lord fights for me, it’s an immense help as I do battle for Luke, both inside and outside of the church. The Lord fights for us. As Moses led the Israelites out of slavery, they were terrified that the Egyptians were pursuing them. Moses reminded them to stand firm because God would fight for them. And He did! He used Moses to part the Red Sea so that the Israelites could escape. If you have time, take a moment and read all of Exodus 14.

Jesus is the one doing battle for us and our special needs loved ones. We are not duking it out on our own, even if it feels that way sometimes. He is in our corner, and He has not forgotten us. We are not alone in the fight.

Thank you, Lord, for that!

Discussion Questions:

1. Have you had to do battle for your child on the spectrum? If so, how has it changed you?

2. Is it easy or tough for you to remember that the Lord is fighting for you and your child/children? Why?  

3. Re-read Exodus 14:14. What do you think it means “to be still” in this verse?

This article is a shortened version of a chapter Deb Abbs wrote in Life On The Spectrum. To read more from Deb Abbs 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.

Buy on Amazon

Written by Deb Abbs

Deb, who graduated from University of Illinois–Champaign/Urbana with a degree in journalism, works as a freelance blogger, as well as a disability ministry coordinator for InterVarsity Christian Fellowship in Illinois and Indiana. Her writing has been featured in several magazines and she was a columnist with the Kane County Chronicle.

She also contributes to Key Ministry’s blog and is one of the administrators of the largest online special needs ministry leader forum, with over 1,000 members.

She lives in the far western suburbs of Chicago, Illinois, with her husband, Mike, their two sons, Brandon, 18, and Luke, 14, plus a crazy English bulldog named Crystal. When not otherwise occupied you will probably find her with her nose buried in a book.

As an Amazon Associate, Hope Anew earns from qualifying purchases.

Connecting With Your Children When There Is No Time

Life can be really full on can’t it! With all the phone calls, appointments and forms that need filling in. Then there’s the planning and support needed for all the everyday things that need doing, and places that need going to. Add to that the constant worries and wonderings about small things like health, friendships, discipline, eating. You know the kind of small details I’m talking about! Life can be so crammed full that it is hard to find time to simply be with my children, and have that time to really connect.

I love to find hobbies or projects that we all have an interest in, and have them ready to go (out in a corner of a room for as long as we can practically stand it) for those moments when either we have space together or those moments when we both need a welcome distraction from the battle over whatever it happens to be right then. It took a bit of time to work out what kinds of things, and it also took a change of attitude to the mess of it constantly being left out but after a while it was so clear to me that it was well worth it.

I had gotten so overwhelmed by all the necessary busy-ness of life that I had lost moments of laughter, of fun, and of understanding and appreciating each other’s strengths in the midst of it all.

We have found common ground in Lego projects, in art for bedrooms, in puzzles, in gardening, in Sims, in crafts. Lately my youngest and I (often joined by my eldest too) have been working on a project to build a dolls house for her 14 inch doll. We have been having fun trying to repurpose all sorts of bits and bobs we have in the house. We have been taking our time and chatting as we go. AS clothes and furniture, wallpaper designs and garden spaces have evolved, we have adored it together. It may not be perfect but it’s been a wonderful process, worth all the mess and the saving of the recycling.

The thing is I never actually have time to do these things, but somehow when they are ready to go we can find moments to dip in and out of the project together.

It’s such a simple thing but something I am increasingly thankful for. Positive time together with my kids is just so needed, for them and their well-being and also for me as a parent under pressure. Doing something together that our strengths and talents can shine through is a wonderful thing, especially when so much of the day to day feels like a battle, and so much of the admin and appointments focuses in on the weaknesses and areas that need support.

What do you enjoy doing with your kids? My husband finds very different projects to be common ground. Whatever it is, be encouraged. Yes, you and I are busy with so many things but moments of busy enjoyment together are never wasted. 

Written by Cathy Porter

Cathy Porter is  a disciple of Jesus, a mum, ordained and a vicar's wife (in the Church of England), a writer, a creative, a blogger.

Cathy and her husband, Andrew, have 3 children. Her two girls both a diagnosis of ASC. You can follow the ups and downs of family life & faith on her blog.

It is Cathy’s heart to encourage families to share in the adventure of faith together, especially families beautifully shaped by ASC. She loves to write stories that make the reader think, ask questions about what we believe, and help the reader to discover what the Bible has to say about God and friendship with him. 

When You Can't Make It All Better

My precious son was writhing in pain, screaming, bashing his head, couldn’t talk and tell me what was hurting or what was going on. He wasn’t hitting developmental milestones. He got sick for three weeks at a time if I took him out in public once per week for church. He would meltdown if we went to a store, if I put my hair in a pony tail, if a car-carrier semi drove by, or any other of seemingly 100 other reasons.

I was heartbroken by my son’s pain. I wanted it to stop. I wanted to take it away. I was heartbroken by the trapped world my son lived in with a body and brain that didn’t function normal or well. I wanted to fix-it. I wanted him to be set free. I wanted to know who he really was, not just the altered state of pain, agony, confusion and misunderstanding I saw in his eyes daily, on the days he was “there” and not “absent”.

I hear from other moms with similar feelings. Kim’s 13 year old son is still wetting the bed and she doesn’t know how to help him. Anne’s 5 year old son, who was severely injured at birth, needs 24-hour home nursing care while another son is a danger to the family and has needed to go live in a group home. Christy doesn’t know where to turn for her adopted daughter’s unknown trauma and personality disorders. Tiffany’s daughter is scheduled for her 23rd surgery. Their children are in so much pain. They have so many challenges. They want to help. They want to make it better.

Are you there? Do you feel the pressure? Sometimes, the desperation? The pressure to help, to fix it, to make it all go away?

I’ve met moms of kids with disability and special needs who say their child is perfect just the way they are and they wouldn’t do anything to change it. I think their challenges must have been different than mine, because if I could have taken away the extreme amount of pain my child was experiencing, I would have in a heartbeat.

Dear pressured, desperate mom, here is a truth we need to grasp onto for dear life. These children are not ours. They are God’s. We are the stewards of this child for this lifetime, but ultimately, they are His.

He created them. He gave them to us to love, guide and care for them. He has a plan for them. When we feel this pressure to solve, to help, to fix and we cannot or don’t know what to do, we must bring the child (along with our pressures and worries) back to Him, lay the situation in His lap and ask for His help, guidance, insight and intervention.

You, dear mom, don’t need to carry a burden He never intended for you. So, give that part of it to Him, that’s His job. Yours is to love well.

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.

Four Ways To Cope When You Are In Survival Mode

How do we think about the future when we are living in so much chaos? Do you ever feel like you are living from one moment to the next, just taking one more breath and trying to put one foot in front of the other? Sarah and I have been in that place of just being in survival mode. Many parents that we talk to also find themselves there, in that place of just trying to make it through the next second and where making it through dinner qualifies as a long range goal.

 There was an eight day study done on mothers of adolescents and adults with autism. At the end of the study, it was found that their stress levels were comparable to combat soldiers! Some of you just breathed a sigh of relief when you read that. I know this study personally resonated with me. It was a relief to know that I am not weak and I so identified with the picture of a combat vet in a war zone.

Common symptoms of combat stress that soldiers experience are:

• Hyper-startle (An exaggerated response when something surprises you)

• Hyper-vigilance (Being always on guard or super-alert)

• Trouble with focus and/or memory

• Flashbacks (re-experiencing stressful events)

• Hallucinations (seeing, hearing or feeling things that aren’t real)

• Nightmares and trouble sleeping

• Depression and apathy

• Guilt and shame

• Withdrawing or avoiding others

• Irritability and angry outbursts

• Headaches and exhaustion

• Extreme anxiety (excessive fear and worry)

Do any of these sound familiar? If so, how many? Maybe some of these things have become so ingrained in you that you have just taken it for granted that that is who you are.

Hyper-vigilance became a way of life for us, beyond just being a helicopter parent. Back to that image of being a combat vet, Sarah often described our marriage after our journey in disability began as the two of us being in a “fox hole” together as we were constantly on alert and fighting for our family. 

In an article in Navy Medicine Live, it was shared that if not addressed, these symptoms can morph into something else, like PTSD or substance abuse.  

So what do we do when we struggle with one or more of the above symptoms?

First, implement a self-care plan.

Yes, I know  you already know this but have you done it? Stress negatively effects every one of our body systems and leads to ongoing health issues. In this video, I share 5 things anyone can do as they implement their own self-care plan. You can also send me your email address and I would be happy to send you a free e-booklet I wrote with the same information.

Second, as much as possible, implement a routine.

On average, adults are making 35,000 decisions a day. By eliminating some of those decisions through having a routine, you will be better equipped to handle the big decisions and the “surprises” that frequently arise. What are some decisions you can streamline?

President Obama was a fan of this. He once shared, “You’ll see I wear only gray or blue suits. I’m trying to pare down decisions. I don’t want to make decisions about what I’m eating or wearing. Because I have too many other decisions to make.”

Third, find a community or select group of friends who “get it”.

Commander Carrie Kennedy a neuropsychologist and aerospace experimental psychologist shared that the real key to effective management of combat stress and long term adjustment was that veterans have to be in regular contact with other veterans.  Veterans need to be able to talk over difficult  experiences with members of the same unit.

 If you are unable  to find that group who “gets it”,  Hope Anew wants to help. We are in the process of building an online community that will launch later this year. This community will be a “laugh together, cry together, pray together” community. It will provide you with those connections who you can be real with and who will get it. If this something that interest you, again message me and we will be sure to let you know when it is launched.

Finally, as believers we have an eternal hope.

We have a Savior who loves us and we know there will eventually be a day where there is no more crying, no more pain and no more sorrow. As we long for that day, it helps to look for things daily that will instill hope and bring glimpses of joy.

You won’t be able to dream and plan for the future until you can manage the stressors of today. If you feel like you are just in survival mode, what is one thing from above that you can do today that will help with your stress levels?

 If the above symptoms persist, become worse or you begin to have self-destructive behavior or suicidal thoughts, please reach out to a professional immediately for help.

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 disabilities on a spiritual and emotional level.

You can follow Hope Anew on Facebook here. 

CHRONIC GRIEF: WHEN LIFE DOESN'T GO AS "PLANNED"

Our church recently had a family game night. I was playing Farkle at a table with other ladies. Two who are currently pregnant, one with her first child. Oh, the anticipation! The glittery eyes, the talk of baby things like car seats, strollers, carriers, sippy cups and swings. I loved joining in on the celebration, excitement, and planning for this new precious one’s arrival.

The conversation turned to maternity leave with all the same joy and sparkle of the previous conversation. Six or eight weeks off work and then back to work and baby gets to come along and how wonderful the situation will be so mom can be out and about. 

That triggered me. I’d had the same anticipation when I was pregnant. I’d had similar expectations. But it had turned out so very differently.

Suddenly, I was struggling to participate in the conversation or even stay sitting at the table. I couldn’t rejoice with the anticipation of the soon-to-be-mom anymore. I wanted to try to warn her to be careful with her expectations or at least have a Plan B in case baby isn’t an easy baby. Because, well, you just never know.  

I couldn’t leave the table without it being abrupt, so I tried hard to keep a pleasant, neutral look on my face so I didn’t throw a wet blanket of gloom on everyone at the table and festivities. I don’t know if I succeeded, but conversation continued swirling and my mind went back in time.

I’d been so excited about my baby. I’d planned and prepared. I’d gotten everything ready. I’d been so careful about not taking any over-the-counter medications or eating food that could pose a danger. I researched natural birth. I had a birth plan. Due to our life circumstances at the time, I had an after-hospital plan, a 2-month plan and a first year plan. And of course, expectations for the rest of my newest little love’s childhood and life. 

But, things don’t always go as planned. You know that or you wouldn’t be reading this. Sometimes plans gone awry are a little hiccup, no big deal. Sometimes, life will never ever be the same.

During the first few years I fought it with everything in me. In the last few years I have come to accept it – whatever “it” looks like – progress or regressions. The unknowns of the future. I grieved the child and life I expected but will never have and came to accept our new normal. Not to say that daily life is easy. But I’ve accepted our reality and am content in my life.

Let me be clear – I delight in my child and who he is, but accepting all the challenges that came with him, the struggle that he (and we) live with daily, and the total upending to our entire life expectations is what was difficult.

Then there was game night and an excited new mom-to-be. As I sat down to write this blog post and traveled back to where she is now, I found tears rolling down my cheeks and sobs escaping my throat. I guess I’m still grieving the loss of that dream, of what never was and what never will be. It’s been so long since I’ve gone there and remembered that I ever had a different dream than what I’m living right now.

Chronic grief. It can be all consuming when you’re in the worst of it or can hit at any moment, unexpectedly. It’s okay. It doesn’t mean you don’t love your child with all your heart. It means that you lost something that was dear to you. Cry, sob, acknowledge it, name it - grief. Then dry those tears and go hug the child you do have and love dearly.

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 with additional needs on spiritual and emotional level. You can follow Hope Anew on Facebook here.