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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?

Blogging

I’m Back!!

 Perhaps my enthusiasm will only be met by the virtual chirping of crickets. My supposed “Last Post” for this blog was almost 3 years ago! So, if any of you are still with me and have not removed this site from your subscriptions, let me know.

Well, a lot has happened in the past 3 years, and I’ll try to summarize as best as I could.

Mother of 5

We added another one to our little clan almost 2 years ago. Our baby girl brightens up our home, and not a single one in our family would protest if I told you she is everyone’s favorite.

Once a blogger …

When I flicked the lights off this site, it was actually a relief. It was freeing not to have to think about the next post. But it wasn’t long before the itch to write became unbearable.

I started another blog, a very different one from this. I actually entered the world of income-earning mommy blogs … ok, a few bucks earned for sponsored posts wasn’t exactly enough to be considered income. With the cost of running my own site, I probably just broke even. But I don’t consider it a waste but rather, a helpful, learning experience. If anything, I realized that though I may take breaks here and there, once a blogger, always a blogger.

What’s in a Diagnosis?

Around the time that I shut down this blog, we were readying ourselves for another round of evaluations, assessments, and therapies. At 8 years old, our son was diagnosed with auditory processing disorder, and this certainly explained a lot of things for us and allowed us to get a better grasp on how he processes information and communicates.

However, there still appears to be a long road ahead of us. We cannot shake this feeling that there is something else there besides auditory processing. It has been a roller coaster ride no thrill-seeker would desire to board. Yet, here we are, seat belts fastened and bracing ourselves for what’s to come and hoping that at the end of the ride are some answers we’ve been seeking.

“Hello, my name is …”

When I first started this blog, I wanted to be anonymous. I even used a pen name, but then quickly removed it because it just felt weird to have readers refer to me by a different name, especially since I shared so much of my heart in these posts. I also changed other people’s names every time I shared particular stories, being extremely concerned about the privacy of others … not to mention wanting to keep internet stalkers at bay.

Ever since the notion to revive this blog surfaced, I knew I wanted to start with a proper introduction …

Hello, my name is Aileen. I have 5 children, and my oldest is named Owen. Welcome to a slice of my world.

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, 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)