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

Family Life

5 Lessons My Children Are Learning From Their Brother’s Special Needs

I have 5 children, but only one of them has special needs. Sometimes I’ve wondered what life would have been like if we only had our son. Perhaps, I would’ve been able to focus on certain aspects of his needs if he was our only child. But then, I consider that each member of our family has had an integral part in the growth and development of our son. And as I ponder this even more, my children have been able to glean important life lessons because of their brother’s special needs.

Lessons on Patience

This is probably the big one. As children get older, effective oral communication becomes more vital in relationship building. Communication being one of my son’s weaknesses, you can imagine that friendships with his peers are rare. If you stick him in a playground full of kids of all ages, you will likely find him running around with the toddlers.

When other children his age can simply ignore him, his siblings can’t do that and still live under the same roof. But to do that peaceably, they have to learn patience. Patience when he can’t fully express what he wants. Patience when he misunderstands them. Patience when he repeats his questions multiple times and expects them to go along with it.

Lessons on Sympathy

Tied to patience, my children are learning how to sympathize. Without sympathy, the appearance of patience is, in reality, like a covered pot that can boil over at any second if left over the heat too long. True patience is motivated by a genuine sympathy for the challenges of another. When a child has a difficult time asking me a question at the dinner table because of too much chatter from the others, it’s an opportunity to remind them that their brother faces that struggle everyday but at ten times the volume.

Lessons on Impartiality

I love how our 2-year-old girl claims no favorites among her siblings. She spends time with each and every one of them without partiality. When the world can be so cruel to the ones who dance to a different beat, I’m thankful for the acceptance and love that my son can receive from his sister. Little ones don’t struggle with this. They have no perception of “differentness” in people. It’s a valuable lesson my older children are learning when they realize that sometimes they may have to forego playing with 5 friends in order to come alongside their brother in need of one friend.

Lessons on Prayer

We face challenges daily, multiple times each day. This is not a runny nose that lasts only a few days. This is our life. And though our son thrives on repetition and requires predictable routines, changes in his anxieties and obsessions abound. And we are all affected. No amount of expert help can sufficiently ease the burden that this has presented for our family. Our children must learn that as often as we are met with these trials, so should our meetings with God be.

Lessons on Love

Shortly after an especially upsetting confrontation with their brother, one of my kids tearfully expressed, “How could I love someone who is being mean to me?” And though my heart ached for my child’s frustration, the Lord gave me the perfect opportunity to give the perfect answer.

“God shows his love for us in that while we were still sinners, Christ died for us.” ~ Romans 5:8

My children may manifest patience, possess sympathy, display impartiality, and utter prayers for their brother, but he can still hurt their feelings. How difficult it is to love someone who is most unlovely! But on the cross, Jesus did.

Does your special needs child have siblings? What lessons do you want them to learn?

5 Lessons My Children are Learning from Their Brother's Special Needs

Community, Coping with the Challenges

The Needs of the Special Needs Mom

When we found out that our child had some severe developmental delays, it was the beginning of a very long and tearful journey. Is this your reality? Or perhaps you know someone whose dreams for their child have taken an unexpected turn.

Though the world may applaud her for her sacrifices and dedication, in reality the mother of this child has some special needs of her own.

The Needs of the Special Needs Mom

She needs a break.

After homeschooling a child with special needs for the past 7 years, one thing has remained consistent: this kid requires A LOT of breaks. But the mother needs breaks as well. Tension can rise quickly even during the most simple conversations. Hitting the pause button or even switching activities can prove invaluable.

She needs time away from her child.

Sometimes a short break is not enough. Because I spend almost every waking moment with my child, I am physically and mentally exhausted before day’s end. I’m thankful when my husband will sometimes take our son out before we both become completely unglued. On a more extreme case, my husband recently whisked me away to the beach for a couple of days because he knew stress levels were high in the home. Even though I resisted the idea (not because I hate beaches, but because the control freak in me didn’t want to leave my son for that long), it was a necessary time to recharge. If you have a friend in this situation, you can offer to take her kid out or, perhaps, she would appreciate it more if you took her out.

Want to know the story behind this photo? Click here.

She needs a listening, sympathetic, and compassionate ear.

Sometimes this mom needs to let it out, vent if you will. She wants to talk about how daily tasks are a common battleground, how she feels like she’s not doing enough to help her child, how it’s hard to join play groups, and how the frequent meltdowns are enough to keep her from leaving the house. She wants to talk freely without judgment. Though there is a place for a timely word of encouragement, sometimes she just needs a friend who will listen and weep with her.

She needs encouragement.

I’m going to be honest with you. Encouraging words for someone struggling in this are not the easiest things to come by. Should you tell her you can relate even though you don’t have a child with special needs? Should you go the practical route and suggest something from a parenting book you just read? Should you tell her everything will be ok or things aren’t that bad? Though meant well, sometimes these responses can sting the open wounds of an already hurting mother.

But don’t shrink back from reaching out to this mom. She needs you to be a true friend, even if you are not in the same situation as she is. The best encouragement I have received have come in the form of a prayer, a Bible verse, or simply “I love you.”

Do you have a child with special needs? What do you need right now?

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, Savoring Simple Moments, Trusting God

The Day He Rode Without Training Wheels

“Mommy, I did it! I rode my bike!” Though I could not see his face, the enthusiasm in my son’s voice came through loud and clear over the phone. Doctors had told us early on that delays in Gabriel’s speech development could also mean delays in other areas, such as motor skills. Play dates at the park confirmed this, as I watched my son struggle to climb the jungle gym, while his younger sister whizzed passed him. Eventually, he improved, and he could climb as well as any 8-year-old. But, one thing that he was still not able to do was ride his bike without training wheels.

Even as a preschooler, he had a difficult time riding his tricycle, preferring to move that thing around with his feet, like the Flintstones. Graduating to a bicycle was another huge hurdle for Gabriel to overcome, but training wheels gave him confidence. He had the biggest bike with training wheels at the park, and I wondered if we would ever be able to remove them.

DSC_0010.JPGYesterday, my husband took him out to go bike riding. By God’s providence, one of the training wheels came off as he was riding. My husband decided to leave it off and encouraged our son to keep riding. When he could tell that Gabriel’s confidence was growing, my husband told him, “Son, I’m going to remove the other wheel. Just give it a try.” After a few minor falls, Gabriel was riding around the parking lot with no training wheels. A couple of bystanders watched and cheered on both father and son. One of them, an older gentleman, said to my husband, “Now that’s something to remember!” And after that parking lot ride, I received the phone call from Gabriel. I wish I could’ve recorded his voice and play it back for you all to hear. He was gushing with excitement. I could not contain the tears of joy, for Gabriel’s accomplishment reached deep into my heart.

I’m just like Gabriel. Timid, anxious, and afraid to fall. I want my training wheels because they keep me steady, but God knows when to remove them. He will keep me steady. And as I entrust myself to Him, I will discover that all along, He has always been holding me up.

 

(Photo credit 1: Lotus Carroll)
(Photo credit 2: billjank)

Trusting God

The Road Ahead

041/365 - April 29, 2009Gabriel’s eyes gleamed with excitement when we entered the small room. The lights were bright for such a small room. The walls were covered with pictures of children of all ages. Then, my son’s enthusiasm came to a sudden pause. “Am I getting a shot, Mommy?” “No, not today.” Back to the excitement again as if there had been no interruption in his thoughts. It wasn’t long before the doctor came in.

It had been about four years since we discussed Gabriel’s development with a doctor. At his last appointment, the pediatrician on his case basically told us, “Just keep doing what you’re doing. No followup appointments are necessary, but call me if you have any other concerns.” We contacted him once after the encouragement of a couple of speech therapists, who thought Gabriel should be re-evaluated. They were convinced that he has autism. His doctor disagreed. So, we left it alone.

RoadIt has not been an easy road since then. This is the time of year when many of us are looking back, reflecting and assessing. Gabriel has had many improvements in his speech and other areas. Indeed God is good! But, as we turn our gaze forward, we are also left with many questions and frustrations. As far as we can observe, there is still a gap between his developmental age and his chronological age, and at times, it seems the gap is widening. The Lord is reminding me to cast my cares on Him because He has not changed. He is still good!

At this recent appointment, the pediatrician said she would refer us to the specialist, who deals with such cases. This was the same specialist, who did not want to re-test him four years ago. My heart sunk a little, anticipating that we will have to go down the same road again, leaving us with no solid answers. Perhaps it will be different this time. Perhaps we’ll actually get a diagnosis that makes sense. Those tests and evaluations were never easy for Gabriel. Am I ready to do this again?

After the visit to the doctor, Gabriel and I stopped at a store to pick up a few random items. As we walked across the parking lot, he held my hand. I gently squeezed his hand and playfully swung his arm back and forth. He laughed and said, “Do it again, Mommy!”

I don’t know yet what we’ll do next, but diagnosis or not, I already know what my son needs most.

As we walked back to the car, I told him, “I love you, son. In the end, all that really matters is Jesus.”

 

(Photo credit 1: Morgan)
(Photo credit 2: Rick Harrison)