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?

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.)

Coping with the Challenges, Family Life

Guard My Mouth

Since he was a toddler, Gabriel’s world consisted of a great deal of repetition. When he was diagnosed at 3 years old with a speech and language disorder, one of the most common manifestations was what professionals called echolalia. If you greeted him with “Hi, Gabriel, how are you today?”, my little parrot would reply, “Hi, Gabriel, how are you today?” Many children engage in this sort of behavior, but they soon grow out of it once they are able to get a handle on communicating more independently. Advised by the speech therapist not to discourage the echolalia, we allowed the repeating to help Gabriel process information before he was ready to respond appropriately.

Though there were still significant delays in his development, he progressed. As predicted, he gained some proficiency in everyday conversation, and the echolalia began to disappear. Well, not completely.

Today he will still repeat, but not during conversations. He is selective and will focus on a certain sound or phrase he hears and repeat it, almost without thinking. His choice, however, seems to almost always be his sister. Is this intentional? I don’t know. But, imagine the child who plays that cruel game of repeating-everything-she-says. “Stop copying me.” “Stop copying me.” “I’m going to tell Mommy.” “I’m going to tell Mommy.” But in this case, Gabriel is not trying to play a game.

silenceAs you can imagine, homeschool has been quite challenging for both of them because he is mimicking every word and sound his sister makes. But I could tell this is just as frustrating for him. One day, he came up to me and said, “Mommy, could you just put tape on my mouth and I will stop copying my sister?”

How many times have I approached God the Father with a similar request? “God, please put a guard over my mouth. Let my words be a blessing, not a curse, to others.” We have been warned that the tongue is more difficult to tame than the fiercest animal. Oh, how true that is!

There have been so many careless words that have spewed from my mouth, mostly directed towards those dearest to me … my husband and children. No amount of remorse can give me back that time and allow me to take back those hurtful words. And many of us know how much deeper the cuts of unkind words are because we have both inflicted and received them.

“When words are many, transgression is not lacking, but whoever restrains his lips is prudent.” (Proverbs 10:19)

“Could you just put tape on my mouth?” Oh, I wish it was that easy both for me and my son. With our mouths, God has given us an amazing privilege of blessing, encouraging, and edifying others. Tight lips would forfeit that privilege. So, our wise Father gives us some very practical instruction concerning godly speech. Less is more. With fewer words, we can be more intentional with them … only speaking when there is real purpose and only saying what is truly needed.

Let us exercise great care in choosing our words. May our words leave behind, not an intolerable stench, but a lasting, fragrant aroma of blessing.

 

(Photo credit: RebeccaBarray)

Coping with the Challenges, Trusting God

The Fight to Worship

SooMee and AndyWe sat down during worship service, and Gabriel was fidgety as usual. With a song sheet in hand, his dad tried to get him to focus on something by inviting him to follow along the lyrics during the congregational singing. This worked last week. This Sunday was a different story. He didn’t want to sing, but he sat there quietly enough that we let him be. When the sermon began, he decided he wanted to sing after all. This didn’t surprise us. Often, Gabriel will do this. He will want to go back to something he had originally turned down long after the activity had already passed. Do-over’s aren’t always possible, as in this situation, and it can sometimes be extremely difficult to help Gabriel move on.

So, for the first 15 minutes of the sermon, my husband tried to explain to Gabriel that he needed to proceed to the next thing. I bowed my head in prayer, painfully aware that my son’s anxiety was beginning to rise to a level that could very well explode. I tried not think of the people sitting around us, who I’m sure could tell of the conflict that was taking place. My mind was spinning, and try as I may, I could not understand a word my pastor was saying. Why did this have to happen now? I thought. Spiritual battles don’t necessarily happen in the dark, secret corners of your house. For me, it was happening right in the middle of a worship service.

Then, all of a sudden, as if The Lord flicked a switch in my son’s mind, he stopped completely, opened his notebook and started doodling as if the quiet argument never happened. Eventually, The Lord calmed my heart and began draw me into His Word.

Before the service ended, we sang one last song.

And right now
In the good times and bad
You are on Your throne
You are God alone

Drowning in an ocean of despair, God displayed a bright ray of hope to me. He is there sitting on His throne. He is still in control. I cannot begin to go the depths of all of God’s purposes for allowing that small battle to occur. Could He not keep Gabriel’s mind from going back and forth? Why did He not give us complete, undistracted time from the beginning? We were, after all, there to worship. I can’t tell you all the reasons why God presented us with this obstacle. But, I will tell you this … in the end, He brought me to worship. And, when I closed my eyes to sing that last song, my heart wrapped around every word.

“You are on Your throne.”

 

(Photo credit: quinn.anya)

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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)

Coping with the Challenges, Family Life

Be Slow

Car Race on Champs ElyséesIn many cases, slow is good. Slow is better than fast. But, look around, and you would think otherwise. Driving behind a slow car can be annoying. Waiting for customer service on the phone for more than a few minutes seems like eternity. Watching the little hourglass on your computer screen while you wait for a website to appear is a huge waste of your time. For many of us, fast is better. The faster things are, the more time we have to do even more things … until we reach the end of our day and feel like we still have so much more to do.

When I began applying for jobs after graduation, my resume highlighted my fast-learning, multi-tasking, type A work ethic. At the time, I suppose I prided myself with such “productive” qualities. But now, the fast-paced, get-it-done, no-nonsense attitude has not led me to fare so well in life.

Today was an uphill battle to get homeschooling done with the children. Nearly at the point of throwing in the towel, I sat there, trying to replay every event and conversation that led up to this downfall. And what The Lord revealed to me is that I was moving too fast. Instead of shepherding my children gently, I impatiently moved ahead of them and became frustrated when they could not keep up.

God spoke to me …

“Know this, my beloved brothers: let every person be quick to hear, slow to speak, slow to anger.” (James 1:19)

When my words begin to multiply, and I find myself essentially saying the same things over and over again to someone, I’m in the danger zone. It won’t be long before those many words explode into an outburst of anger. And my hearers (in this case, my children) are sadly caught in the blazing fire (James 3:5-6).

There is one thing, though, that God instructs me to be quick about: “quick to hear”. Have you ever witnessed an irate customer while shopping at the store? That person gets louder and louder about their complaints, and the manager’s explanation of store policy falls on deaf ears. As a bystander, I actually feel embarrassed for that customer because they look rather foolish. But that’s me. I was the irate customer today, not willing to hear my children and not willing to listen to God’s Word because I wanted my words to be heard.

In this fast-paced, breakneck, lightning speed world, it is good to be reminded to slow down.

 

(Photo credit: SaZeOd)