Because I am a Special Needs Parent

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You see me in the office and wouldn’t know I run on three hours of sleep every night. Because I am a special needs parent.

By the time I get to work in the morning I have fought battles, cried, laughed, overcome, and failed. My day started hours ago. Because I am a special needs parent.   

I strive to ensure schedules, order, and consistency for my child who thrives on such things, while embracing the chaos of an ever changing and unpredictable disability. Because I am a special needs parent.

I have learned of a deeper kind of love than I could have ever imagined. Because I am a special needs parent.

I bear scares down my arms from my child’s aggressive meltdowns but they do not compare to the pain inside my heart as I’ve had to restrain him from hurting himself or others. Because I am a special needs parent.

There is an incomprehensible joy that floods my soul when my child takes me by the hand or looks me in the eyes. Just one touch from his hand gives me hope that one day a touch will turn into a look, a look into a gesture, a gesture into a word, and a word into the ability to communicate. This burst of joy is strong enough to give hope that presses on until the next time. Because I am a special needs parent. 

Exhaustion sets in as I fight for the rights of my child. He is worth believing in. He is worth being given an education. He is worth being given every opportunity to reach his full potential. It is my daily task to ensure this happens. Because I am a special needs parent.

I long for connection with others yet feel so alone and wonder who could ever understand this beautiful, crazy life we live. Because I am a special needs parent.

There is no achievement too small. I have learned to celebrate even the smallest of things: One word spoken, an independent bite of food taken, a hug given...these are monumental in our world. Because I am a special needs parent.

I know his facial expressions by heart and can most often predict their meaning. I understand the “gibberish” that many hear when he speaks. I know what songs bring him peace and what sounds set him off. I know when it’s time to go and when we can stay a little longer. Because I am a special needs parent.

I fight for my marriage as the stresses of disability and all that it entails wedges its way into our time for one another. Tensions are high and patience is low. We learn to be extremely intentional in our pursuit of each other. I know how extremely blessed I am to have a husband to walk this journey with me. Because I am a special needs parent.

Just his smile is enough. It lights up my world and fills my heart. Because I am a special needs parent.

There is a balance I’m constantly struggling to find as I strive to give time, attention, and affection to my little girl who is not disabled. Because I am a special needs parent.

I fail at being a good friend, keeping up with family members, remembering birthdays, and finding time to socialize. Because I am a special needs parent.

I plead with the Lord on behalf of my son. Every night I present my requests to Him knowing that He is fully capable of healing my son, but also trusting Him if His answer is “no” or “not yet”. Because I am a special needs parent.

Considering all these things, I would do it all over again. This precious child the Lord has entrusted to me has taught me more about life, love, and what matters most. Because I am a special needs parent.

Though many times I feel so very ill equipped, I know that God has specifically chosen me to be the momma of this precious little boy. God is not in the business of making mistakes. So I trust Him and lean on Him for the strength to press on. Because I am a special needs parent. 

From One Special Needs Parent To Another: Don't Give Up

Dear Parent,

I know how easy it is to feel like you are all alone in this, but you’re not. While your child’s special needs may be different from mine, we are on a very similar journey. I want to encourage you with three words. Simple though they may be, these three words are so important for the task the Lord has given to us. The Lord has entrusted you and I with the life of a child who has special needs. So, no matter how ill-equipped you may feel, no matter the severity of the disability, no matter how weary you have become, let these three words spur you on as you care for your child. From one special needs parent to another: Don’t Give Up.

I know your weariness. I know how you sleep with one eye open and one ear listening throughout the night, just in case. I know how you wake in the wee hours of the morning to change soiled bedsheets and to wash your precious child. I know that often times coffee and a prayer is what keeps you going all day. Don’t Give Up.

I know your discouragement. I know that no matter how many times you give yourself a pep talk, you will find yourself comparing your child’s development to other children their age. I know that for every milestone achieved, it seems there are a million more standing in the wings. Don’t Give Up.

I know your fears. I know you fear for the future of your child; wondering what level of independence they will have, their wellbeing, and what will happen to them when you are no longer around to make a way for them. I know you fear for your child’s education and whether the school budget or politics will limit their chance at having every opportunity for personal growth and success. Don’t Give Up.

I know your joys. I know that overwhelming sense of excitement when you watch your child achieve something for the first time. These are moments of pure joy that others might find hard to understand like when you feel as though you have just conquered the world because your child made eye contact with you for the first time. I know how one touch from your child can make all the days of struggle melt away in an instant. I know that little things are not so little in this life of ours. I know that those moments and milestones that bring us such joy are almost puzzling to the rest of the world. Don’t Give Up.

I know sometimes you might feel like giving up. As you fight and you push and you try your hardest to make a way for your child in this world, sometimes you become weary. Sometimes it seems like an uphill battle. Don’t Give Up. No matter how battle-weary you become, you must hold tight to this task the Lord has entrusted to you. Because no matter how ill-equipped you may feel at times, the Lord specifically chose and gifted you with this special child.

Let us pick ourselves up, dust ourselves off, and continue making a way for our children. Giving up should never be an option. Continue praying over your child, the Lord hears you. Continue those late nights and early mornings, the Lord is with you. Continue those therapy sessions and treatments, the Lord will provide. But most importantly, protect this gift that the Lord has entrusted to you and Don’t Give Up.

Psalm 127:3 “Children are a gift from the Lord; they are a reward from him.”

First posted at www.IrresistibleChurch.org 

The Courage to Try Something Wonderful

Not too long ago, we were given a very generous, very wonderful gift. It was a vacation. You see, for the last two years our life has been pretty crazy. Between my husband going back to school, receiving our son’s diagnosis of Autism, moving several times, and learning how to balance this thing called Autism in our daily lives, our little family has been stretched in more ways than we could ever imagine. Throughout this time, I have seen the Lord work and experienced His hand move in my heart and in the life of our family in amazing ways. But that doesn’t mean that it hasn’t been hard. Well, a very special couple who knows our story well, saw a need and gifted us a vacation. What a blessing!

They supplied the trip, but we had to supply the courage.

That’s right, I said courage. You see, it takes courage to travel very far when you have a child with Autism. Traveling forces you to venture into public. Traveling means restaurants and hotels. Traveling means people. And sometimes (not always, but sometimes), traveling can mean stares, ugly looks, and comments.

Traveling with a child who has Autism also means you are taking a child that relies heavily on structure and familiarity, out of their “comfort zone” and introducing them to new sights, smells, and sounds…sensory overload!

So, where might a family like ours vacation where we are most likely to set ourselves up for a successful trip? Welp, we found a place!

Our family took a trip to San Antonio, Texas, where our main attraction was an amazing place called Morgan’s Wonderland.

Morgan’s Wonderland is a park especially designed for special needs families. This park includes all kinds of sensory activities and is fully accessible to everyone!

One of the things that I will never forget is watching a young lady roll her wheelchair onto an adaptive swing, and the joy that spread across her face as she was able to swing through the air. I wondered if she had ever been able to swing like that before. I wondered what an amazing feeling of freedom that must have been for her.

Another wonderful thing about this “wonderland”, was the staff. It was obvious that the staff had a heart for special needs children of all types and they were there to make sure each child had a great time.

What was amazing about this place was that there were families there just like ours. When Ezra had one of his melt downs we didn’t feel everyone’s eyes staring us down. When Ezra rocked back and forth with excitement at the sight of the Choo Choo Train, no kids laughed at him or gave us funny looks. Everyone there was a little “different”, and that made us all the same. How refreshing!

Besides our Morgan’s Wonderland adventure, we did attempt “normal” activities. We swam in our hotel pool, we ate out a few times, and we drove through many-a Starbucks.

We did try to prevent “behaviors” by putting these few things into play:

-          We requested a handicap hotel room (Ezra sleeps in a special bed that we must bring along and he also enjoys the extra space).

-          We called ahead to restaurants and requested tables that were away from most of the traffic/away from the crowd as much as possible.

-          We “armed” ourselves with all of Ezra’s favorite things (toys and movies).  

-          We prayed over Ezra and asked the Lord to give him peace and a calm spirit.

Although we had a few meltdowns and “Autism Moments”, I would consider our vacation quite a success! It was so special to watch both of our children enjoy themselves and share in our much needed family vacation.

I am so thankful for our little getaway! Thank you, Lord, for having provided us with this special trip and thank you for the courage to try something wonderful! 

 

Below is a gallery of pictures we would like to share from our trip. Just click away to scroll through!