Community

Why My Path is Different From Yours

I know better than to compare my son to his peers, who have no special needs. But the desire for affirmation, to know that we’re ok (because most days, it honestly feels like we are all but ok), has often led me to the comparison trap, even comparing my child and myself to other special needs families. Though some of us, who have children with special needs, seem to walk side by side, we each have our own path to follow. And even though I might know what it’s like to walk in your shoes, it’s good to know we are hiking along different trails.

At a time when you don’t want to feel alone in your hardship, why is this a good thing?

Special Needs Mom, Don't compare.

Because We Are Different

I’m a checklist-dependent, time-obsessed, overly organized control freak. But that all changed when I had children. The constant changes that come from having children in your life fought against every part of my Type A personality. And the way I handle my son’s special needs may be different from the way you respond to yours. But that difference could be useful. When I face the same battles day in and day out, my reactions can sometimes be on auto-pilot. But seeing how a friend handles her special needs child allows me to see these challenges from a different angle and perhaps change my responses for the better.

Because Our Children Are Different

The world of special needs covers such a wide spectrum of disabilities and challenges. Some are physically exhausting, while others zap your mental energy. Some disabilities are visible, while others are only apparent to those who get close enough to notice. Some children are high-functioning with the potential to be more independent, while others will likely need assistance for the rest of their lives. We can find hope, encouragement, and inspiration from each other’s stories, but it makes no sense to compare our children’s progress. Their successes will occur at different times and to different degrees, and we will celebrate them all.

Because God Works in a Variety of Ways

It had been a while since I checked my social media feed, but something gripped me, pierced me right in the center of the most tender part of my emotions. Not at all prepared for the sudden outpouring of tears, I strained to hold them back until I relocated to another room, away from any possible inquiry from my children.

What I read was a brief account of a child with special needs, who had made leaps and bounds beyond what others expected. The post was full of hope and rejoicing and did not warrant the sorrowful reaction I gave it. But for that moment, I grieved. I grieved for the mountains that my own child had not scaled, the doors that were not opened for him, and the obstacles that remained in his path.

But my husband wouldn’t let me dwell too long on the comparisons, knowing it’s an exercise in futility. He reminded me that God is working in that family as He is in ours. It won’t look exactly the same.

We are different.

Our children are different.

But we have the same God, working in a variety of ways to bring about the same glorious outcome.

“On earth, the underside of the tapestry was tangled and unclear; but in heaven, we will stand amazed to see the topside of the tapestry and how God beautifully embroidered each circumstance into a pattern for our good and His glory.”
~ Joni Erickson Tada

Community

To the Ones Who Reached Out to My Child

My son was just trying to make conversation, but it was very one-sided. If he’s passionate about something, he will talk your ear off, regardless of your opinions on the subject. Clearly, the other child on the receiving end of this information overload just didn’t get my son. “There’s something wrong with his brain,” I overheard him say to someone else, and I realized he was talking about my child.

At that moment, I wanted to cry but controlled it to spare myself from being the center of attention at a public place. I wanted to scoop up my child, put my arms around him, and shield him from any hurt, intentional or unintentional, that will come from this world.

But I know putting him in a protective bubble is not what’s best. As cruel as the world can sometimes be, there are people God has placed in my child’s path to reach out to him, and you are one of them. You may be thinking, “Me? What did I do?”

You greeted him.

A simple “hello” goes a long way. Far too many of us are preoccupied with our own world or the world being displayed on the tiny screen in our hands, that we fail to look up and notice the person right in front of us, who could use a simple smile to brighten his day.

You listened to him.

Not only did you say “hi”, but you asked the loaded question, “How are you?” Perhaps, you were not expecting a detailed catalog of all the Minions and their unique characteristics or a list of voice actors from The Lego Movie, but you looked at him and listened to it all.

You hugged him.

I think this assures him of acceptance by you. Isolation is his fear, as is the case with many of us, so a handshake, a hug, or a high-five allow him to experience the human connection that any person seeks after.

You invited him.

He seemed content to be alone, but you went out of your way to invite him to sit with you. Honestly, social situations are still challenging for him, so he probably felt awkward about accepting the invitation. Nonetheless, you took a courageous step with a seemingly simple kind gesture.

You became his friend.

He doesn’t have very many friends. In fact, if you asked him who they are, he would list names of family members … brothers, sisters, mom, and dad. But you … he mentioned you. You became his friend.

Approaching someone who’s “different” can be intimidating. I understand that. After all, if you’re not crossing paths, why take the detour to intentionally go to that person? Why risk the potential awkwardness of the encounter? Would it even make a difference?

Yes, it does … it certainly does.

Coping with the Challenges

To the Mom of the Child with Special Needs (Part 2)

It was about 5 years ago. I sat in the school’s office with my son, filling out enrollment paperwork. Though I hurried through the process, I wasn’t fast enough to escape an impending meltdown. We weren’t quite done, they told us. He had to take a photo for his school ID card.

What should’ve been a quick point and shoot moment was anything but that. That ID card, with the picture of his tear-stained face, would always remind me that the path ahead would have many obstacles to overcome.

Are you a mother of a child with special needs? Perhaps you can relate well to this story. Maybe you’re just beginning your journey, and you feel paralyzed, afraid to take the next step, not knowing where this road will take you.

In my previous post and in this one, I hope to share some thoughts that will give you courage to press on.

Stay Two Steps Ahead (+ Two More)

Even if you’re the most spontaneous person on the planet, when you become a mom, you will likely become the person, who instinctively prepares ahead.

But if you have a child with special needs, you need to stay two or more steps ahead. There is no such thing as overpreparation. Not only will you have a Plan B, but Plans C, D, and E will also be safely tucked in your mental files. Moreover, you will have to include your child in this preparation, walking him through every step ahead before it happens. Transition from one activity to the next is tough for special needs kids, but it can go more smoothly when you announce what is to come so that he has some time to adjust.

Seek Support From Others

The path you’re on can be a very lonely one. It’s so easy to get into the mindset that no one understands, but that thinking just leads to further isolation. You don’t have to feel alone. I know it can be risky to lay open your heart like that, but God may have prepared that friend to be the one, who will bear this burden with you. And, it doesn’t have to be someone, who has a child with special needs. You can receive great encouragement from those who are willing to listen and be there for you.

Spend Time Reflecting

When faced with the challenges of caring for your child, a number of thoughts spin around in your head … some thoughts are irrational, some depressing, and some even despairing. “Will I ever have a normal life?” That time needed to reflect is not to multiply more thoughts, like these. But rather, it is to intentionally meditate on the complete opposite.

I have spent a lot of time in earnest prayer and reading the Bible, so that I would see my situation, not through the eyes of a tired, frustrated, and inadequate mom, but through the eyes of a powerful, gracious, and all-sufficient God.

“But He said to me, ‘My grace is sufficient for you, for my power is made perfect in weakness.’ Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me.”  (2 Corinthians 12:9)

If you missed Part 1 of this, click here.

Coping with the Challenges

To the Mom of the Child with Special Needs (Part 1)

I never thought I would be on this road, being a mother of a child with special needs. Actually, I take that back. A road is probably not the most accurate description because, often, it feels like a roller coaster. Nonetheless, this path that God has put me on has come with many blessed lessons.

If you are a parent, who has just received the news that your child has and will continue to have some specific, special needs, you may feel as though you’re caught in the rapids, trying to stay afloat, while the raging waters of information from doctors, therapists, specialists, and educators surround you and threaten to engulf you. It doesn’t have to be that way. You don’t have to be in despair.

Don’t Compare with Others

Ah, the comparison trap! We all do it, whether or not we have a child with special needs. But this is especially detrimental for the mom with the special needs child. “Special needs” implies they are on a completely different page from most kids their age, so comparing is an exercise in futility.

I used to always feel like I needed to get my child “caught up” and felt discouraged at the thought that he will always be “behind”. But caught up to what? Behind in what? Whose standards anyway? Is it in education? Motor skills? Social skills? It was stressful.

Your child’s milestones will be different from his peers and from his own siblings. An unhealthy preoccupation with the progress of others will keep you from focusing on your own child’s development.

Rejoice in the progress (no matter how small)

Sometimes it may feel like there’s no progress at all. It takes a bit of stepping outside of yourself and seeing your child from another vantage point to notice that there are changes. Perhaps recording them in a journal will help you see them and be intentional about searching for them. Don’t limit yourself to the great leaps and bounds. Progress is often seen in the small baby steps. Remember being overjoyed when your baby took his first steps. That doesn’t have to stop now.

Be Your Child’s Special Friend

Making friends will likely not come easy for your child, especially as he gets older. Party invitations might be rare, and play dates will probably be a challenge to arrange. I have wept over my own child’s lack of friends and wept even more when I realized he had matured enough to notice this too. 

I remember that at his own birthday party a few years ago, my son pulled me into one of the rooms away from all the guests, closed the door, and asked if we could play “I Spy” together. As much as I wanted him to be comfortable with everyone else, I was the one he really wanted to be with. I was his special friend.

You may be going through this difficult and emotional season in your parenting journey. Or perhaps you know someone who is. One of the hardest things for me is feeling alone in this. Will you share this with someone who could use the encouragement?

(Click here for Part 2.)

Trusting God

When Things Don’t Go as You Planned

I wrote this a couple of years ago on another site, but I thought it would be fitting and a good reminder because I’ve lost count how many times I’ve looked longingly at the rosy path from a distance, while God has led the way to the far different, rocky trail in front of me.

~~~~~~~~~~~~~~~~~

There’s a pile of papers waiting for me to look through. They’re not bills that need to be paid. They’re not my kids’ schoolwork that need to be put away. They’re not letters that need to be opened.

They are papers given to us by a doctor, a specialist in speech pathology and audiology. Why would I have papers like these on my desk? Because one of my children was diagnosed with an auditory processing disorder. So now, we have some decisions to make about therapy, education, and how all of that will affect our whole family. Honestly, it all gets overwhelming sometimes. Hence, the papers remain untouched on that desk.

When a woman first realizes there is this life growing and thriving inside her, there are no limits to her dreams. She dreams of rocking that baby to sleep. She dreams of holding his hand and never letting go. She dreams of showing him the beauty of this world and its Creator. Those were my dreams.

They still are, but the path to each looks far different from what I had imagined. I did not picture doctors, therapies, treatments, psychological assessments, and special needs consultants. But they are there, and I must accept that and believe that even though it’s hard to see sometimes, God will make something beautiful out of this.

I imagine that you probably have something like this in your life. Something that has not turned out exactly the way you planned. Something that you feel is out of your control. May I encourage you to receive it, embrace it, and make the most of it.

There are really only two choices: despair or hope. I have been in despair. It is a dark, dark place and a paralyzing state. But, hope in God is what enables me to keep moving forward and pressing on despite the obstacles before me.

What do you choose?

Trusting God

My Last Post

 

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I was looking through these files the other day. My husband and I had a consultation appointment with a doctor, who specializes in Speech-Language Pathology and Auditory Processing Disorders. The office asked us to bring any past evaluations and assessments that have been conducted on our son. As I sorted through all the paperwork, I came across a polaroid picture of Gabriel that was taken 5 years ago. He was 3 1/2 years old, attending his very first speech therapy session. There’s an obvious look of anxiety in his face. In the picture, you could see him tightly gripping someone’s hand … mine. I remember that day vividly. He was so scared.

Now, here we are. My son is almost 9. The road has been rough, and still, I wonder what is ahead for him and for us. My faith is shaken sometimes, as I share the same anxiety my son felt that day 5 years ago.

This doctor that my husband and I met was recommended to us by some friends, who have been on a similar path with their youngest son. At the end of the appointment, we scheduled Gabriel’s evaluation in June.

Perhaps we’ll get a real diagnosis. Or perhaps the doctor cannot pinpoint exactly what it is.
Perhaps our path will be clearer. Or perhaps it will become more muddled with decisions to be made.
Perhaps we’ll get our questions answered. Or perhaps we’ll find ourselves asking new ones.

I am thankful for the opportunity to have this evaluation done, but I realize that I can’t put my hope in it, its results, or the doctor who will conduct it. No matter the outcome of this evaluation, it is The Lord who will continue to lead us as He has been faithfully doing these past 5 years.

When I began writing here, I never could have imagined this is where it would take me. I want to extend my deepest thanks to you for reading what I have shared here about my journey. Thank you for encouraging me. Thank you for weeping with me. Thank you for praying for me and for my family.

But, I believe it is time. It is time to close this chapter. To look with eager anticipation at the road ahead … though it be rough, God is good. God is most definitely good.

Family Life

Love Lessons

It was one of those days, where I felt like no matter which way I turned, I was hitting a wall. There seemed to be obstacles everywhere that kept me from going where I wanted to go and doing what I wanted to do. There were challenges with my children: it seemed my voice could not be heard, my directives could not be understood, and my efforts could not be appreciated. So, our homeschool day ended on a sour note. The pity party began.

I give, give, give to this family and get nothing in return.

So, here is where The Lord took me in the midst of my complaining.

“… train the young women to love their husbands and children” (Titus 2:4)

But I do love them, my heart would protest. It is apparent in the time, energy, efforts, and sleep that I sacrifice for them. I am practicing sacrificial (agape) love for them. And, I know I’m not alone in this. Without a doubt, many wives and mothers love their families in this way.

But the Titus verse is a command for women, not to agape love, but to phileo love, meaning to love with affection.

I have been so busy loving my family with sacrifice, I have failed to love them with affection.

My love falls short.

On his way home from work, my husband called, “Let’s take the kids to the park.” My first thought was to respond, “You can take them. I have other things to do.” I looked at the kids, and they were playing happily together on the floor. They don’t have to go to the park; they’re just fine over there. How could I possibly take any time to go out and play with them when the sink was full of dishes, dinner had to be prepared, and the tower of laundry was about to topple over? Thank The Lord for holding my tongue.

We went to the park. I pushed my 2-year-old on the swing while we sang one of his favorite nursery rhymes together. I watched with delight at my 5-year-old boy climb up the hill, diligently looking for the best rocks for his collection. I hugged and kissed my only daughter after she fell and scraped her knee and then ran off to play again. And, I supported Gabriel’s legs as he excitedly swung his arms across the monkey bars.

Before this day, I was missing out on a lot by not phileo loving my children. Praise The Lord that in His kindness, He didn’t let me miss out this time.

Family Life, Savoring Simple Moments

Reading to Children

Picture BooksAt a very young age, I was an avid reader. I would come home from the library with an armload of books. My love of books continued through high school, and it was not unusual for my parents to find me sitting in the living room in the middle of the night, lost in the pages of a novel.

After my children were born, the time to read became more and more scarce. I read to Gabriel a lot up until he was around 2 years old. Though I still had a desire to instill in my children a love of books, I found myself reading less and less to them. I’ve heard from other moms that reading aloud to your children above their level is good for them, but Gabriel’s challenges with language and attention span were enough to keep me from pressing on. I almost gave up.

After recommendations from a couple of friends, I bought a book called Little Pilgrim’s Progress by Helen L. Taylor. I had read John Bunyan’s Pilgrim’s Progress before, and I wondered if my children can handle sitting through this timeless tale. Upon closer inspection, I learned that Helen Taylor’s book is actually an adaptation of Bunyan’s classic, written from a child’s perspective.

“If John Bunyan were alive at the present time, I think he would forgive me for the liberty I have taken in attempting to unlock his treasury and to bring ‘that gold, those pearls, and precious stones’ a little nearer to the childish hands, which are always so ready to receive such gifts.” — Helen L. Taylor (Preface to “Little Pilgrim’s Progress”)

I looked at the sample pages online. It’s a chapter book with very little pictures. I had been wanting to graduate my children from the big picture story books, but I didn’t know if they were ready. Would they just tune me out when I read aloud to them? To their ears, would I just sound like Charlie Brown’s teacher? “Wah wah woh. Wah wah.”

I decided to take the plunge and began reading the book to them in the beginning of this year. What a wonderful treasure this book has been to me and to my children! During our lunch, I read to them a chapter from the book, and then discuss it over our PB & J’s. Even Gabriel, who still has difficulty with reading comprehension, is recalling many details from the chapters that we read each day. What I am most thankful for is that this book has opened up so many opportunities for me to share the gospel. Our conversations about the book has not been reserved for meal times only because the story has sparked so many questions in their minds about the Bible and Jesus Christ.

What began as a quest to get my children to love books more has enlarged to a heartfelt desire for them to love Jesus more. I had some plans, but God’s plans were greater.

 

Note: Remember that I was about ready to give up, but I was convicted by Ephesians 5:16 to make “the best use of the time” that God has given me with my children. He also used the following blog post to inspire me to take up this task once more. Perhaps it may spur you on as well.
How To Get Your Children Excited About Read-Alouds

 

(Photo credit: nickyfairless)

Blogging

A Year Ago

Point & ClickOne year ago today, I clicked “Publish” on my first post for this site. Before that day, I had been thinking about starting a blog like this for a while, but like I’m sure many of you have felt, I honestly didn’t think anyone would read it. Moreover, I didn’t know how much time I could really commit to writing. Was this going to be just another project I couldn’t finish? So, imagine my delight when I realized that this little piece of cyberspace actually reached its first anniversary!

I have wrestled with so many things, especially in the area of parenting my son, Gabriel. And I needed a place to write down what God was teaching me, not only through Gabriel but through other people and circumstances in my life. Prone to forgetfulness, writing has helped me to remember God’s Word better. It has caused me to think more deeply about what was happening in my life as part of God’s providential plan to bring glory to His name. In short, The Lord has been showing me it’s not all about me.

I could’ve just written all this down in a personal journal, but The Lord has placed in my heart a desire to share His lessons with others. They are not mine to keep and hide away anyway. Through blogging, God has provided another instrument to use for the exaltation of Jesus Christ.

I know not everyone who comes by and reads this blog is a mother of a child with special needs or even a parent or a Christian. But for whatever reason, you came. I believe God brought you here. I have prayed for you, not by name, but I have asked The Lord to use this site for His glory and bring whoever He wills. From the very beginning, it has been my hope that others would read, not merely stories and testimonies of a mother and her child, but an account of God’s goodness, faithfulness, and love.

“Not to us, O LORD, not to us, but to your name give glory, for the sake of your steadfast love and your faithfulness!”  (Psalm 115:1)

 

(Photo credit: PaT)

Community, Coping with the Challenges

Not Just Another Sunday School Class

The Lord is my shepherdThis past Sunday, we were faced with a challenge. We checked in our children in their respective Sunday School classes and joined the rest of the congregation at the worship service. Just when the sermon began, one of Gabriel’s teachers came in and pulled my husband out. I sat there, quietly praying that whatever the issue was, my husband would be able to handle it by God’s grace. He came back a few minutes later and whispered, “It’s okay. He just needed to go to the bathroom and needed some help.” A few more minutes passed, and my husband was called out again. And once more, I prayed silently at my seat. Another usher came back and motioned for me to come with him. Oh no, I thought. This doesn’t look good. When I walked out into the foyer, a few more ushers pointed in the direction where my husband went. He was standing outside the student center with Gabriel, and as I came closer, I noticed he was struggling to keep him still.

It turns out that while Gabriel was in the bathroom, the rest of the class continued with their activities. By the time Gabriel had finished and joined the class, they were doing something completely different from when he first left the room. This was a difficult transition for him. He wanted the class to be the way it was before. We finally had to pull him out of class. Stuck in that specific point in time, we could tell he would be unable to calm down. One of his teachers gave me a reassuring hug before we left and prayed for us. She and her husband have been truly an encouragement to us these past three years that they have had Gabriel in their class. They have never made us feel bad about Gabriel’s meltdowns, though I know they have created quite a stir in the class. The next day, she called to let me know they are praying for us, and they made themselves available for any help that we may need.

How important it is for us to come alongside one another! A hug, a prayer, a timely Bible verse of encouragement. We need each other. It’s easy for us to just turn the other way, limit our involvement, and move on with our own lives. But, God adopted us into His family. He made each of us a member of the body of Christ.

DSC_8457After we left the classroom that Sunday, the three of us walked back to our car. Our emotions were high, and my husband and I needed some time to calm our hearts as much as Gabriel did. After incidents like this, we are usually so prone to discouragement. But while we were in the car, people were praying … the two teachers as well as the children in his class. God heard and answered their intercessions. In the past, Gabriel would be inconsolable, and my husband would have to spend the remainder of the morning in the car with him. But this was not the case on that Sunday morning. The Lord flooded both my husband and I with peace, and our Gabriel, who had been screaming in his classroom just a few minutes prior, was instantly calm and quiet.

We were able to return to the building with our son and hear God’s Word preached. God is good!

 

(Photo credit 1: Tojosan)
(Photo credit 2: caddy_corner)