special needs

Morning Cup of Sunshine

I awakened this morning while it was still dark outside and the house was quiet. I have always been an early riser. As I sauntered down the stairs, the old, well-known proverb “Early to bed and early to rise, makes a man healthy, wealthy and wise,” my son-in-law, Ben, quoted to me while we were on family vacation in Utah last summer floated through my mind. Ben had noticed my sleeping habits while we were on vacation and was thrilled to see that they resulted in a beautiful breakfast buffet awaiting him each morning.

Morning is the time when my thinking is the clearest and I can accomplish the most.  I look forward to the quiet moments in the morning that I get to spend with God praying and studying. It’s the time of day when I feel closest to Him.

Dealing with grief, morning cup of coffee

This morning, as per my usual routine, I headed straight for the kitchen to make the coffee. I pulled the Folgers Breakfast Blend out of the coffee cabinet, grabbed the Coffee Mate Snickers flavor from the refrigerator, and began filling the coffee pot with water. I love my morning coffee. It is oftentimes the first thing on my mind when I awaken in the morning and the last thing on my mind when I fall asleep at night.

As I sat at my kitchen table and drank my morning cup of sunshine, I began googling “Bible studies for special needs parents” in an attempt to find material we could study for the Moms’ Group that I lead. I stopped on one Bible study in particular titled “Held: Learning to Live in God’s Grip.” As I was reading, an unexpected wave of sadness swept over me and the tears started to fall that even my morning cup of sunshine couldn’t chase away. I had been slapped in the face with the reminder that I was no longer the mom of a child with special needs.

In the midst of my sorrow, I remembered the words spoken from one of the moms at a previous meeting: “This is temporary! This is temporary!” she exclaimed. A sentence with just three words, but for those of us who are suffering, what a profound sentence it is. I then embarked on a quest that morning to find Bible verses to comfort and remind me about the short-term nature of life’s pain and suffering. Below are the verses I found:

2 Corinthians 4:18
So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.

1 Peter 5:10
And after you have suffered a little while, the God of all grace, who has called you to his eternal glory in Christ, will himself restore, confirm, strengthen, and establish you.

Psalm 71:20
You who have made me see many troubles and calamities will revive me again; from the depths of the earth you will bring me up again.

Joel 2:25
I will restore to you the years that the swarming locust has eaten, the hopper, the destroyer, and the cutter, my great army, which I sent among you.

Revelation 21:1-5
Then I saw a new heaven and a new earth, for the first heaven and the first earth had passed away, and the sea was no more. And I saw the holy city, new Jerusalem, coming down out of heaven from God, prepared as a bride adorned for her husband. And I heard a loud voice from the throne saying, “Behold, the dwelling place of God is with man. He will dwell with them, and they will be his people, and God himself will be with them as their God. He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.” And he who was seated on the throne said, “Behold, I am making all things new.” Also he said, “Write this down, for these words are trustworthy and true.”

After being encouraged by God’s promises, with materials spread across the table and my coffee cup in hand, I pondered life for awhile and thought how every single one of us on this earth suffers. Of course we hate it and try our best to avoid it, but, sadly, no one escapes it. People we love become sick, marriages fall apart, kids rebel and make bad choices, spouses lose their job or get hurt and become disabled. The list goes on and on.

“For the Christian living in this fallen world, what exactly is the purpose of suffering?” I asked myself.  “There has to be a reason God allows us to suffer.” After researching a little more, I came up with two purposes for suffering:  To bring glory to God and for our good.

We have a choice of how we respond to suffering.  If we choose to suffer well, we display to an unbelieving world that Christ is more valuable and magnificent than any sorrow or pain we might be experiencing.  Suffering well creates opportunities to point others to Christ.

Suffering also loosens our tight grip on this world that always falls short of meeting our expectations and turns our gaze toward heaven with the hope of all things made new. It motivates us to work for a cause greater than ourselves and increases our capacity of compassion for others. Suffering causes us to put our hope in Christ rather than in the temporal things of this life for which God then receives the glory.

We don’t have to suffer alone though. God comforts us during times of suffering. His presence alone gives us strength and rest to endure our trials.  Psalm 34:18 says, “The Lord is close to the brokenhearted and saves those who are crushed in spirit.”  Psalm 23:4, “Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me.” Exodus 33:14, “And he said, ‘My presence will go with you, and I will give you rest.’” God’s Word is true and infallible, and if the Lord says He will be close to us during our times of suffering, then He will.  If the Almighty says He is with us while we walk through the valley, then He is, and if the Great I Am says His presence will go with us, then it will.

As we go about our days, may we always remember the wise words from the mom in Moms’ Group and remind ourselves often that suffering is temporary.  We have been given hope from God’s Word that one day we will be restored, confirmed, strengthened, and established and He will wipe away every tear from our eyes and death shall be no more.

We have an eternity of joy and contentment to look forward to, so go now, dear one, and suffer well.

Consider the Poor

Respite was our biggest need during the three years that TJ lived at home. We needed a break from time to time to rest and recharge. We had two options for TJ’s care on the brain injury waiver: One, provide care to TJ ourselves and receive payment from the state. Two, place him in adult daycare or be given an allowance and hire our own caregivers to care for him while we worked. We chose the first option because of lack of trust with outside facilities and also because we felt it would be too tiring for both of us to work all day and then come home at night and provide care. As his paid care provider, we were not given any respite services from the state. There was a small amount of respite available from Medicaid, but because TJ had a trach and needed skilled care, they could not provide staffing.

It is common for families to get their services cut while on the waivers. While we were on the brain injury waiver, in the beginning we received a bath aide five days a week. Then we were cut to two days a week. When I asked our social worker why our services were being cut because we were barely getting by as it was, she stated, “The disabled are viewed as a drain on society. When funds start getting tight, they are the first ones to get cut.” Needless to say, I was appalled. My precious, kind, smart son who once had dreams of becoming an engineer was now viewed as nothing more than a drain on society.

For the purpose of writing this post, I spoke to many special needs families in an attempt to gather information about their needs. I found some families who feel like they get enough respite on their waivers and sometimes don’t even use all of their allotted respite. However, I also found other families who are exhausted and feel that they do not receive enough respite and that it is a major problem.

One mom with two children with special needs applied for the intellectual disabilities waiver. The waiting list at the time of application was over two years. During the course of those two years, they moved to another house, and the waiver acceptance letter was sent to the old address. When she called to inquire about the status of the application, she was told the letter of acceptance had been mailed to the old address and that she had missed the deadline for the time to respond. She was told there was nothing that could be done about it, and they were put back on the bottom of the list. Currently they are still not on any waivers, and the only respite they receive is from what their church offers, which is three hours a month. They look forward to it all month, only to sometimes find out it has been cancelled due to a lack of volunteers.

A few months ago I met a special needs mom new to our church, and one of the first things she said to me was, “We have no respite.”  Upon hearing her distress, my heart ached for her because I understood the exhaustion and despair she feels. She and her husband are now in their retirement years. Providing care to their son is becoming too difficult for them physically. Her son uses a ventilator at night when he sleeps. She is terrified of what could happen to him if he is placed in a nursing facility.

Another friend cares for her loved one with a brain injury by herself at home because he experienced abuse while in a facility.  She works at home three days a week and goes to the office two days a week while two caregivers she trusts care for him at home. She said she is exhausted and needs a break but doesn’t want to burn her caregivers out and doesn’t trust him with anyone else because of the past abuse.  She rarely receives any respite.

A young, newly married, stay-at-home mom has two toddler boys, and one of them has a speech disorder and cognitive issues. Because he is frustrated from not being able to communicate, he screams all day. By the end of the week, she says she is about to lose her mind. They have applied to be on a waiver. If accepted they will eventually receive some respite, but the waiting list is long. She was told it could be up to two years or longer before they will receive any help.

By sharing my story and other family’s stories, you may now be more aware and understand better the needs and challenges special needs families are experiencing. You may want to help but are not sure how. Below is a list of practical ways that you can help special needs families:

Begin a Special Needs Ministry at Your Church
Many churches are recognizing the need for programs within the church for individuals with special needs and have developed special needs ministries. If you attend a church that doesn’t have a special needs ministry, consider discussing with church leadership the possibility of starting a ministry.

Buddy On Sunday Morning
The special needs ministry at the church I attend provides a buddy for every child with special needs while their parents attend church. Most special needs ministries require a lot of volunteers, and our church, in particular, sometimes has trouble staffing these volunteer buddy positions. Many may be afraid to volunteer in this ministry if they’ve never worked with a child with special needs before. For me, before TJ’s injury, I would have been nervous about volunteering in this ministry, and I would have shied away from it.

When TJ was alive and attending church, a man named Tom volunteered to be TJ’s buddy.  He taught TJ a lesson from the Bible every Sunday while Travis and I attended church. Travis and I looked forward to church because sometimes it was the only break we would receive for weeks.  It was a time when we could turn off being on call, enjoy alone time together, and worship and listen to God’s Word. We are very grateful for Tom’s service to us and that he cared about TJ’s spiritual needs and wanted him to grow in his relationship with Christ. TJ loved him, and he and Tom developed a very special friendship. I know Tom was very blessed by TJ as well.

Now that TJ has passed away, Travis and I serve as buddies two Sundays a month. Frequently, I buddy with a 9-year-old boy with Down’s syndrome. Every morning when I walk into the classroom, an enormous smile breaks out across his face. He runs and throws his arms around me. We walk hand in hand to his classroom. During music time, I stand quietly by and watch him enjoy worship. My heart sometimes feels like it will explode. I am overfilled with joy watching him sing and dance. Afterward we break into small groups. I may gently direct him a couple of times or help him with his lesson, but otherwise that is about as hard as it gets. Almost every Sunday at the end of group time, he becomes tired. He plops down on my lap, shoves his thumb in his mouth, and snuggles into me as we wait for his parents to pick him up. He is an absolute joy, and I feel extremely blessed from the privilege of being his buddy. This is a good example of what to expect if you volunteer in a Special Needs Ministry.

Brain Injury Respite Care Ministry

TJ at Saturday Respite Care

Buddy at Saturday Respite Care
Our special needs ministry, as well as many other churches, offers respite one Saturday a month for three hours.  This is a day when parents can drop off their children with special needs and their siblings for a much needed break. Some families use this time to be alone with their typical children and give them some undivided attention, or they may use it to get some couple time with their spouse. Right now because of volunteer needs, our church, in particular, only serves the families who attend our church but in the future would like to open this event up to the community if God provides more volunteers.

Other Various Ways
If none of the above ways to serve appeals to you, there are other ways you can serve in a Special Needs Ministry.  Consider volunteering for once-a-year events like Wonderfully Made Family Camp or Night to Shine. You can provide transportation, shop for events, do food preparation, or serve on a leadership team.

It is a great time to be a part of a special needs ministry.  I believe God has heard the cry of special needs families and has seen their suffering, loneliness, and isolation.  He is working and moving in this ministry, and exciting things are happening!

TJ Denham Book

Tom helping TJ out of his wheelchair to
dance at Night to Shine

Respite Home
For several years I have had a dream of building a respite home. After sharing this with our special needs coordinator, I discovered she has had the same dream.

During the week, the respite home would be used for training opportunities for people with special needs. The home would provide classes for cooking, lawn care, folding clothes, woodworking, crochet, karate, etc. The home could also be used as a place of employment that gives opportunities for people with special needs to work while being supervised. The home would be a place where individuals with special needs can learn, grow, and build positive relationships with one another while they’re learning new skills.

On the weekends the home would be used as a weekend respite facility.  It would be a safe place with well-trained staff where parents can take their children with special needs for the weekend so they can get a much needed break.

Please join us in prayer that God would provide the funds, staff, and location to undertake this project.  We think it would be a huge benefit to the special needs families in our community.

Waivers and Safe Care Facilities
Much work needs to be done with the waivers and care facilities.  More services need to be provided on the waivers so the families who have chosen to care for their loved ones at home can be successful.  And for the families who have chosen a facility to care for their loved ones, the facility absolutely must be a safe place for the residents who live there.  This can be achieved by installing cameras in resident rooms, requiring more extensive training and testing for CNAs with better pay, and providing more staff so patients will receive timely and thorough care.

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My goal in writing this post was to educate and inform others about what the lives of special needs families are like. I hope I have achieved that and you now know a little bit more about this very special community. My hope is that as people become aware of this under-served community, more will be done to improve the lives of individuals with special needs and their caregivers.

Psalm 41:1-4 says:
Blessed is he who considers the poor;
The LORD will deliver him in time of trouble.
The LORD will preserve him and keep him alive,
And he will be blessed on the earth;
You will not deliver him to the will of his enemies.
The Lord will strengthen him on his bed of illness;
You will sustain him on his sickbed.

“The poor intended, are such as are poor in substance, weak in bodily strength, despised in repute, and desponding in spirit.  These are mostly avoided and frequently scorned.” (Spurgeon)

Consider the poor and refuse to look away from human suffering.  Consider the poor and step in and help where you can. Consider the poor and pray for them daily. Consider the poor….and YOU will be blessed.

The Quick Head Turn

My son TJ was born a typical child. At the age of 16, he acquired a brain injury that left his body severely disabled but his cognition intact. He thus became a child with special needs. During the five years that TJ lived with his brain injury, one thing that became glaringly obvious to me was the lack of education in the community about how to treat people with special needs. Many, many times my heart was broken for TJ and for myself because of hurtful comments or actions that were made from the Christian community and the non-Christian community alike. After struggling with anger for a time, I began to realize it was really just a lack of education, and I felt a burning desire to do something about it.

First, let me start by explaining what “typical” means. “Typical” refers to basically any person who doesn’t have special needs. Many people in the special needs community are offended by the word “normal,” and rightfully so; therefore, the word “typical” is used in its place. For me the word “normal” does not bother me when referring to TJ in particular because who he was after his brain injury was not his normal. However, it is very understandable why the parent of a child with Down’s syndrome would be offended by the word “normal” because their child was born with Down’s syndrome which means God created the child that way and that IS the child’s normal. Labeling a child as “normal” or “not normal” can be very hurtful, so to be safe, it is best to stay away from using those terms.

Now that our vocabulary lesson is done, I want to share a story of my mindset of special needs prior to TJ’s injury in 2013. A few months before his surgery, I was at a craft show with a friend. As I came through the door into the room, I saw a young girl, maybe 5 or 6 years old, with special needs in a wheelchair. After seeing her, I quickly looked the other way and pretended I hadn’t seen her. After meandering through the craft tables for awhile, I came back around to the entrance of the room and saw the little girl again. However, this time a woman was standing beside her. The woman was caressing the little girl’s face and talking softly to her. As the little girl was leaning into the caress, a look of pure pleasure spread across her face from the love and attention this woman was showing her. I immediately felt ashamed. “Why didn’t you acknowledge her?” I thought. “Why didn’t you at least just smile at her? Why did you just pretend she wasn’t there? I’m supposed to be a Christian,” I told myself.

Read more about TJ Denham in Kelly's Book

Tom playing cards with TJ at respite care at Valley Church

Fast forward four years. One Sunday morning we were attending church. Generally TJ went to his own room where Tom, a very kind man with a servant’s heart, taught him a lesson from the Bible. However, on this particular Sunday, Tom was gone, so TJ stayed in church with us. Toward the beginning of the service at our church, there is a greet-your-neighbor time. While I was shaking hands with the people around me, I kept my eye on TJ. I noticed nobody came to shake his hand or greet him. I immediately felt very sad for him and ran to be by his side. I then saw a woman a few rows in front of us scanning the room for another person to greet. When her eyes landed on TJ, a look of uncomfortableness flashed across her face, and she quickly turned around. My heart sank. I was now on the receiving end of the quick head turn, and it didn’t feel good.

Even though the woman’s failure to acknowledge TJ hurt, I understood what she was feeling that morning because I had felt the same way years prior. I assume that like me before TJ’s injury, she probably had no experience with special needs and didn’t know what to do. She may have had thoughts like: “If I approach him, will he get scared and start screaming?” “If I greet him and he can’t greet me back, will it make him uncomfortable? Will it make me uncomfortable?” “Maybe he really just wants to be left alone.”

What the person with special needs and their families want everyone else to know is that as much as it is possible, we just want to be treated like everyone else. If it’s the greet time, greet us and shake our hands. If the person with special needs can’t shake hands, give them a gentle touch on the shoulder and tell them you are happy they are there. If they are nonverbal and can’t respond, that’s okay. Tell them anyway, smile, and then move on like you would with everyone else. You never know how much a person with special needs is capable of understanding by looking at them. Some are far more capable of understanding than you think they are, and even if they aren’t capable of understanding your greeting, their families are and they notice when their child is being acknowledged and they do feel loved by it.

I am convinced that it was not a coincidence that the event at the craft show happened just a couple of months before my son became a person with special needs. I believe God had me experience both sides of the quick head turn so that I could help build a bridge between the general community and the special needs community. It really is just a matter of education.

I’ll never forget what my friend Kim did for TJ the first day he was healthy enough to return to church. She was elated when she heard the news that TJ was there. She made a beeline straight to him, fell all over him, and told him how happy she was that he was there and how much she cared about him. After having experienced so much rejection, her kindness still brings tears to my eyes. Kim didn’t seem to notice that TJ was drooling all over himself, that there was a gurgling sound coming from his trach, or that he couldn’t focus his eyes on her when she talked to him. What Kim saw was a heartbroken person who had been through a terrible tragedy and needed to be loved. That day she made him feel like he was a little bit more of a person and a little bit less of an outcast.

Whenever I see someone at church or in the community with special needs, I remember what Kim did for TJ and how it made us feel. As best I can, I imitate her actions to other people with special needs so they will also feel a little bit more like a person and a little bit less like an outcast.

Job 6:14a “To him who is afflicted, kindness should be shown by his friend…”

Kelly Denham Author

While I'm Waiting Author Kelly Denham

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