It is the New Year….and the “R” word is frequently heard ……One more opportunity to measure my successes and failures….One more opportunity to get overwhelmed and feel more guilt for what I haven’t yet done… my weight, my check book, my parenting….
Every parent wants to connect with their child. No parent ever has thought or said, “I wish I could be permanently locked out of my child’s heart and her world.” Recently, while doing research for my graduate course for teaching children with special needs and disabilities, I had an epiphany: There is a key into each of our kids’ worlds. No parent is hopelessly locked outside of their child’s world without a key.
When my son was born and we brought him to church for the first time, I stood full of a father's pride displaying him up high in the air like Simba in the Lion King. Months later my pride was replaced with concern as I began noticing he was different than other infants. He could not look at our eyes or faces like newborns often do. Instead, he always turned his face away when we looked at him.
Under normal circumstances the holidays are a stressful time of year. From the time we are old enough to remember, the standard for what the holidays should be is set very high. Holiday movies lead us to believe that a normal experience includes mothers happily doing all the work, children playing nicely together and fathers sitting contently in their easy chairs. Or even when everything goes wrong, everything is back to normal in time for Christmas dinner and everyone has their happy ending. If that describes your family, please invite me for your holiday celebration! If it does not, then welcome to the real world!
According to the United States Census Bureau, approximately 20% of the U.S. population has a disability covered by the Americans with Disabilities Act. These can range from hearing or speech impairments to vision impairments, intellectual challenges or physical challenges to autism or ADD/ADHD.
Here is the challenge: Children with special needs can present perceived obstacles to teaching well-organized classes in the “traditional model”. There are unique challenges for parents to attend meetings of the body and small group activities. These children may need special accommodations that require a great deal of thought and possibly additional manpower. So why would we make that a priority in our children’s ministry or in our church?
While Jesus walked on the earth he healed the deaf and blind, the disfigured, disabled and tormented – not because they were imperfect, but because he wanted to demonstrate the incredible glory and love of God. In John 9, Jesus tells his disciples that a man born blind was not being punished for his sins, or the sins of his parents, but he was born blind “so that God’s works might be displayed in him.” John 9:3 (HCSB)
Jesus considered the opportunities, and so must we. As we reflected on our church, we saw that although we had started various programs in the past, they eventually faded away. We realized that we had to help our members see the children and their needs differently. We needed to see them in the light of 1 Cor. 12. What makes a church complete is diversity... people with special needs create an important part of the diversity and are indeed indispensable! One of our goals as a church is to grow in the “fruits of the Spirit”. Many people with special needs can outshine the best of us in some of these fruits. They require special care that helps us grow in our fruits. As parents, we do not believe God allowed our son to have a disability so that we could care for him. He allowed it to teach us (and others) how to be more like Jesus. After speaking with the leaders, our region made the decision to include parents and caregivers in services more often. As they express their love and appreciation for how God has moved through their special children, others learn to see the opportunities for God to be glorified. As caregivers share their stories of challenges and victories, the members are inspired to build their own relationships with the families and children, and to learn God’s lessons as well.
Our region also worked within the children’s classes – to teach our children how to appreciate those who are different. We asked random adults to sit near the kids during the music service in “big church” wearing odd outfits, hairstyles, hats and had them behave in some unusual ways (this was hard on the ushers, so imagine how hard it was on the kids!) Then in class, we talked about all the ways we respond to differences...sometimes we giggle, get irritated, get distracted, we try to make sense of it and we may struggle!
We also helped the children “try on” disabilities through simulation and had them do a timed activity as teams. They experienced firsthand what other children may face every day. They learned that frequently the hardest thing about having a disability is not the physical challenge, but the social isolation they feel because they are viewed as different or less than others.
We recently did the same training for the Kid’s Kingdom volunteer’s and included our Region Leaders and one of our Elders.
Our region created a special needs assessment team. We recruited an occupational therapist, a social worker, a special education teacher, a behavioral aid, a speech and language assistant and a prayer warrior. We are also looking for a crafter who could help out with creating specialized materials. The members of this team are not assigned to Kingdom Kids classes, but are always on call.
When a new child with special needs comes into Kingdom Kids, the appropriate members of the team meet with the parents and create a plan to help the child be successful. Within the group, we have the ability to draw out the parents, modify curriculum, develop physical and visual supports, train the teaching staff and implement the plan. This group is also available to troubleshoot with kids who are already in our ministry.
We are organizing a group of teacher aids, specifically for special needs children, who will receive specialized training and be on a separate rotation within Kingdom Kids. Additionally, we’re organizing monthly family meetings for parents of children with special needs.
It is not a perfect plan, and there will probably be plenty of glitches, but it is a start and something we feel like we can do right away. We will keep you posted on what is working and what is not. Please keep us in your prayers as we continue to learn how God is glorified by these special little souls! Our heart’s desire is to have the inclusive church that 1 Cor. 12:23-24 talks about: “23 And those parts of the body that we think to be less honorable, we clothe these with greater honor... God has put the body together, giving greater honor to the less honorable”(HCSB)
Camp HOPE Provides Opportunities for Campers with Special Needs
By Lori Ziegler
It was a week of discovery. Camp is a week where bonds are built and hearts change in ways that are downright miraculous. First time campers and parents alike often approach the experience with mixed feelings. Is my child ready for this? Will my child make friends? Will I fit in? The difference at Camp HOPE last summer was that for the first time the camp was open to special needs children. The week was filled with unexpected blessings and lessons for all involved.
To get a taste of what Camp HOPE was like, let’s take a look at the experience of one camper:
The first day Jerome tried on the helmet at the zip line but had to immediately take it off. He just didn’t like the feel of it on his head. Later that day he tried to get into the harness, but again decided he just didn’t want that thing on his body. Instead of giving up though, something in Jerome kept pushing him to try again.
The next morning he let his mentor know he wanted to go to the platform again. This time he was able to put on the helmet and the harness and climb the ladder. As the staff member held tight, he looked longingly over the edge, wanting so badly to go down the zip line, but unable to find the courage to take flight. He came back down.
Meanwhile, word kept floating around camp that Jerome, a 13-year-old non-verbal autistic camper really wanted to go down the zip line and kept trying but just couldn’t make himself follow through. With every attempt, more and more of the camp and staff left their activities and gathered to encourage Jerome and see what would happen. They clapped and encouraged every step forward that he made.
In the afternoon of the second day, Jerome allowed the staff members to put on the helmet and harness. He climbed the ladder, looked over the edge and decided that this time he could follow through. He was brave enough to take the leap! Camp director Cathy Rosenquist said it was the gentleness and patience of the camp staff and Jerome’s mentors that helped him find the courage he needed. Once he went down, there was no stopping Jerome. He went down that zip line over and over again! It proved to be his favorite activity every day for the rest of the week!
Every camper that attended Camp HOPE last summer experienced similar victories. Shannon’s mom sent in these remarks about the week: “Shannon and I had an incredible experience. (She) was able to be herself without any fears of not fitting in. She participated in activities she never would have tried. I am so grateful that camp helped Shannon blossom and that it allowed me to let go.”
Learning to let go was a common theme for the parents of the campers. This week was the first time Jerome had spent apart from his parents. Jerome’s mom said that he had a “fantastic time” and that she and her husband “now know that we can let Jerome go and have fun with his peers and he will be alright. Actually, better than alright.”
Each camper at Camp HOPE was accompanied for the week by an adult caregiver or parent. Campers were also partnered with volunteer mentors from the HOPE Youth Corps Girls Corp and supervised by trained camp staff members. While the campers enjoyed their chosen activities for the day the caregivers/parents had precious “time off” to spend with each other and to get their own needs met.
Camp HOPE was such a success that in 2014 it will again be hosted at Camp Hope For Kids in Schwenksville, Pennsylvania, about an hour outside of Philadelphia. From August 3-8 campers with special needs (ages 8-15) will gather to build friendships, try new activities, participate in a shaving cream fight and have fun-filled Bible devotionals every day.
E-Essentials Adapted Bible Studies for Special Needs This site is created by disciples working to make disciples. Their goal is to develop a collection of adapted First Principles Bible Studies for those with various special needs. This will become a resource for those all over the church to evangelize. It is a data base of inspirational and applicable resources to save those with special need and take care of them after baptism. Utilize the website to post E-ssentials studies, good news, advice board, and secular resources/ links to help work with those with special needs. This may become a beacon of hope and inspiration to churches all over the world to help the gospel reach a new frontier of hearts and souls. Help make disciples of everyone!
Check it out - http://spiritual-essentials.net
Many Thanks to the San Fransisco Church for sharing this resource.
September 5, 2013
Psalm 34:17-20 “17 The righteous cry out, and the Lord hears them; he delivers them from all their troubles. 18 The Lord is close to the brokenhearted and saves those who are crushed in spirit. 19 The righteous person may have many troubles, but the Lord delivers him from them all; 20 he protects all his bones, not one of them will be broken.”
Matthew 12:20 ”A bruised reed he will not break, and a smoldering wick he will not snuff out.”
Sometimes I feel beaten and bruised – and yet God won’t allow me to completely break. He won’t snuff out even the smallest spark of light in my heart. Sometimes I feel that is all I have – a small, smoldering spark. But to God, that’s enough.
Just when I thought it would be smooth sailing from here – as if that were possible – our family is thrown for a loop. Our 21 year old son with Down syndrome, who has always been quite high functioning, is now regressing. He is losing focus. He can’t remember directions he has been given and he is exhibiting signs of an anxiety disorder. We have no idea why. We thought he would graduate from his transition program and be able to work. We aren’t so sure now. Just the other day after I dropped him off at his program, I once again felt that feeling of loss as I watched him having a difficult time. I cried in my car all the way home. I hate crying all the way home! I hate that feeling of my heart breaking once again. I was reminded of the day we found out he would be born with Down syndrome. I’ll never forget the spot in the hospital hallway where I started to cry. I’ll never forget the sense of loss and of dreams being shattered. My husband and I had been joking just hours before about how intelligent our child would be – you see, we both went to Princeton University and graduated with high honors and highest honors. And we were having fun joking about it. How much life can change in just a few short hours. I was crushed.
Life often goes that way. It was never meant to be free from pain. It was never meant to be the ultimate for us.
Matthew 5:45 “He causes his sun to rise on the evil and the good, and sends rain on the righteous and the unrighteous.”
God causes the sun to shine and the rain to fall on both the good and the evil. Good and bad happen to all. That is life. Some of us have more “good” things happen to us than others; some have more “bad” things happen. Bad is going to happen, although I really should say that it is our definition of bad. For some the sun shining is fantastic when others would much rather have the rain. It often is a matter of perspective. All I know is I want to be on God’s side when the rough things come my way. Life has no guarantees. How we deal with life is what matters. Wouldn’t you rather be on God’s team if you have to go through something difficult? I would. At least with God, the bruised reed can heal rather than break.
As for Barrett, when I recently asked him if he’d rather work a job or hang out at his program, he said, “I like hanging out!” I thought, “Me too! Wouldn’t we all!” He’s happy doing what he is doing. The one who can get unhappy is me. It is still difficult to see him when he is anxious or not engaged, but I have a feeling God has a plan and I’m going to trust that. Who wants dull moments anyway? (OK, I guess sometimes I do!).
Read More from Ann Roby at http://ahroby.wordpress.com/
David had it on his heart to do a noble thing for God – to build God a house, a place for the ark. David had a palace; God had a tent. To David, that was wrong. David probably believed God had even put it on his heart. He made plans to construct God’s house and even chose to sacrifice a large amount of his own wealth to build it. How could it not be God’s will? Wasn’t that noble? Wasn’t that selfless? How could God say no to that? But He did. God told David no. And it wasn’t the only time. God also told David no when David prayed for his infant son to be spared. Now that may not seem as noble or as selfless, but come on, his son was an infant! How did David react when God said no to building the temple? He didn’t get angry, sulk or become apathetic. Instead, David prayed and thanked God for the good He did for him! How did David react when God said no to sparing his son? He didn’t run from God or refuse to speak to Him. David went into the house of the Lord and worshiped.
2 Samuel 12:19-20 “19 David noticed that his attendants were whispering among themselves, and he realized the child was dead. ‘Is the child dead?’ he asked.
“‘Yes,’ they replied, ‘he is dead.’
“20 Then David got up from the ground. After he had washed, put on lotions and changed his clothes, he went into the house of the Lord and worshiped. Then he went to his own house, and at his request they served him food, and he ate.”
What an example! I want to be like David when God says no to me.
I did have three months to pray for a miracle of no Down syndrome when I was pregnant with Barrett – but God said no to that and gave me a son with Down syndrome. God has said no many other times to many other things. But you know what I’ve seen come from those times? I’ve seen my faith grow when God says no – maybe not right away but that has been the ultimate result. I end up realizing I have nowhere to turn but to trust in God’s plan. Barrett most recently has had a very tough time and is regressing – I’ll explain more in a later post – but suffice it to say we are now seeing a psychiatrist. We’re on our second one, actually, because the first one I had to educate on Down syndrome and I felt like I was suggesting the treatments. I’ve prayed constantly for God to help us find the right medications, the right treatment, and nothing seems to help. God keeps saying no – or at least, “not yet.” It’s been painful to watch Barrett change into a different person who is not capable of doing things we once dreamed he would do. I wonder when things will get better. I feel sad when I see other young adults growing and changing and working and dreaming, and I wonder why not Barrett? So I have to wrestle once again with God’s plans.
The funny thing is I think my faith has grown from the no’s. Those no’s mean I have to continually surrender to God’s plan for Barrett’s life and that is helping me be at peace with His plan. It’s not like I can control what medications work – only God can do that. I don’t know if God wants Barrett to get better (or at least my version of better). I have to surrender that this just might be God’s will for Barrett’s life. I have seen time and time again that when I decide to surrender, God never ever lets me down and that His way is always the best way. All that really matters is God’s will for Barrett’s life. Just like us parents have to say no to our own children sometimes, God does the same – and I’m now convinced it is always for our benefit, even if just the benefit of growing in our faith! How do you handle it when God says no to you? Why not try it David’s way?