Check Out a new blog for parents of children with Special Needs - Here is the first blog from Ann Roby
Visit http://ahroby.wordpress.com/ to read more.
John 9:1-3 ”1As he went along, he saw a man blind from birth. 2 His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?”
3 “Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him.”
“Why?” In my mind I had given up so much for God and could not understand why He let this happen to me. Maybe my heart was so evil that God had to do something drastic to save my soul. Maybe it was the consequence of past sin. Maybe God wanted to change me and this was the only way I would listen. I didn’t know the answer and wasn’t sure I would get an answer. So I decided to toughen up and do what I needed to do to get through the tough times – be faithful and trust God has a plan. Easier said than done; or maybe I should say easier faked than done!
Having a child with special needs is not really something you can “get through.” It’s not an illness that is going to get better. It’s not a circumstance that is going to change by moving or changing jobs or having a child grow and mature. It’s a lifelong journey – at least as a parent, you hope it will be a long life for yourself and your child.
I have had many people say to me that I must be a special person if God chose me to have a child with special needs. I have to admit, I’ve hated those comments. I would think, “If I’m so special, why is it God is treating me this way? Why do others, who aren’t ‘special’ have it so much easier?” – and even sarcastically, “Lucky me for being so special!”
Many times I do feel pretty lucky, actually. But often it still hurts. Yes, even after 21 years, it can still hurt. I don’t want to sound like having my son is not a blessing and that he isn’t awesome because it is and he is. But sometimes it stinks and I wish life were different. I am hoping through this blog that I can be brutally honest and help out a few souls. I love my son. I wouldn’t trade him for the world, nor to be honest, I’m not sure I would wish he didn’t have Down syndrome. He wouldn’t be who he is if he didn’t have Down syndrome. But I want to be real and share my sorrows and my joys and share just a bit of how God and His scriptures have helped me – and still help me – get through. I hope they help some of you.
When our son was born, someone read the above scripture to me over the phone. I know they meant well but how discouraging it was to be in the position to have that scripture read to me! I didn’t like it at all. I appreciate it more now. They were trying to give us hope but I couldn’t hear anything past the first question the disciples asked. I thought maybe I was at fault and I wanted to know if that is what God thought as well. At that time I missed the entire response that Jesus gave. I realize now God wants to do something with all our lives to display His great works through us just a bit. God will bring about some good and that gives me hope.
San Fransico, USA
Announcing: A Camp HOPE for Kids Especially for Children with Special Needs
HOPE for Kids is excited to announce that we will be offering, in cooperation with the HOPE Youth Corps, a week-long camp designed especially for students, ages 8-21, with developmental delays. This week of camp is for children and young adults with diagnoses like autism, Down syndrome, mental retardation and other developmental disabilities. Typically, these children and young adults are able to walk, but often need assistance with other care and behavioral needs.
This special week at camp will take place August 4 -9, at Camp HOPE for Kids in Schwenksville, PA. The registration cost for each camper is $395 for the week. Each camper must have at least one caregiver stay with them for the week. The cost per caregiver is $80, which covers the cost of meals.
Is this Camp HOPE for Kids the right camp for your child?
Our programs may not be a good fit for some children who present with aggressive or oppositional behaviors, limited language skills, limited cognitive ability or limited self-care skills.
This summer, HFK will be hosting the 1st CAMP CORPS. Single adults and families with children 10 and older, are invited to come to camp for a week of fun, hard work and spiritual growth.
The week will begin with the Greater Philadelphia Church service at camp on June 30 and end on Friday, July 5 with a closing devotional after breakfast. The cost is $80 per person. To register go to the HOPE for Kids website: www.hopeforkids.org
In 2007, E-Soccer founder Russ Ewell was awarded the prestigious Jefferson Award as well as a Congressional Citation from US Congressman Tom Lantos in recognition of his positive impact on the youth of the Bay Area community.
In 2008, E-Soccer joined forces with US Soccer Coaching academy to provide high quality soccer skills and drills training and instruction to all our coaches.
E-Soccer’s inclusion methodology promotes leadership as well as social, character, and athletic development for each child in an individualized manner. Children are taught to learn from one another.
Each individual E-Soccer group consists of a head coach, assistant head coach, and a combination of personal or junior coaches as needed. Children are placed in a group according to age, ability, and individual goals in a way to provide optimal group learning and individual participation. It is encouraged that parents take time to get to know the head coach of their child’s group and communicate their child’s needs and goals.
A “Rising Stars” group is available for kids 3 and 4 years old. These children must be accompanied by at least one parent or guardian during the one hour duration of the session. So, as a parent you will get in on the fun!
E-Soccer is offered free of charge for all families and operates from private donations. We happily accept monetary and equipment donations at any time. If you are interested in making a donation, you can do so by going to the donations tab on the home page or by contacting your local E-Soccer Coordinator.
We look forward to having you join on the field!
“Yet to all who did receive him, to those who believed in his name, he gave the right to become children of God.” John 1:12
One of the most comforting concepts in the Bible is that we are all God’s children. Whatever our talents, financial worth, race, education, gender, or abilities, we are all equally adored and accepted by our God and Father.
We are all familiar with Jesus’ words: “Let the little children come to me and do not hinder them, for
the kingdom of heaven/God belongs to such as these” (Matt. 19:13-15; Mark 10:13-15; Luke 18:15-17).
Children are of utmost importance to Jesus. He specifically bids them to come to him.
If we are Jesus’ disciples, then we are his body on this earth (Rom. 12; 1 Cor. 12; 2 Cor. 4; Eph. 1; Col. 1).
He actually lives and dwells within us (Gal. 2:20; Eph. 3:17). This means that in this day and age, Jesus
calls the children to himself, in part, through us – through our actions and interactions with the children.
When they see us, they should see Jesus. We are to value them, love them and include them as Jesus
Of course we know that all children are not alike. Each child is a unique gift from God. Every child is
fearfully and wonderfully made (Psalm 139:13-16), no matter what their strengths and weaknesses may
be. In our children’s ministries, however, there are times we encounter difficulties as we find ourselves
teaching children who do not learn in the same way as the majority of the children in the class. Some
children may have learning differences, emotional or behavioral issues, cognitive disabilities, or one of
many other challenges that interfere with typical classroom routines and teaching methods. Teachers
in such situations can feel frustrated or helpless, not knowing how to meet the needs of these particular
children. Two specific groups of people come to mind that can be an invaluable resource to us in this
area: special needs professionals and the children’s parents. There are many professionals throughout
our ministries who are well trained and experienced, and they know how to help. There are many
disciples among us who are special educators, social workers, speech pathologists and therapists,
doctors, nurses as well as other professionals who specialize in the area of children with special needs.
How can we tap into this excellent resource in our children’s ministries?
After communicating with several other churches, including regions o f the San Diego, Los Angeles
and San Francisco churches, the New York City Church decided to set up a basic plan in our children’s
ministry to more effectively reach the hearts of these special children. We discussed the plan at a
church-wide meeting of the regional children’s ministry coordinators, and the following is an excerpt
from our “Children’s Ministry Coordinators Manual:”
Love these children and value them as the precious works of God they are (Psalm 139)
Suggested simple steps for working with children with special needs in your ministry:
1. Identify children in your ministry who need a shadow (1:1 teacher).
2. Identify an individual who can be a shadow for each child (e.g. you have 4 children who
need shadows; decide on 4 people who can be shadows – or more if you want to have
trained substitutes on hand).
3. Ask the individuals if they work be willing to serve in this way.
4. Ask a professional in your ministry if they would be willing to train these shadows to
work effectively with the children they have been assigned to (advise on tips/tricks/
strategies for basic classroom routines, behavior issues, etc.).
5. Training could take place during mid-week (check with ministry staff for best plan).
You may also have children in your ministry who have special needs, but they do not require a
shadow. In this case, ask a professional to observe the class, and then offer tips/techniques/
strategies to the teachers of that class. The teachers will then be better equipped to meet
the needs of the children. The professional can continue to provide support through ongoing
communication with the teachers.
Consult church-wide directory of professionals for additional guidance and resources. [We put
together a directory of special needs professionals throughout the church. Approximately 30
individuals are on the current list, which includes name, occupation and contact information.]
Of course we are aware that there cannot be one generic plan that will sufficiently meet the needs of
all the children, as every child is totally unique. But the insight and wisdom of trained professionals can
help teachers meet the unique needs of each child.
Professionals can also assist in communicating with parents, who are probably the most valuable
resource in knowing, helping, loving and meeting the needs of their children. Parents usually know what
specifically helps their children at home and at school. Perhaps certain routines or visual aids or fidget
toys, etc. help tremendously. We will not know this crucial information unless we talk with the parents.
But the area of special needs is very sensitive and people’s feelings can easily be hurt, so it may be most
helpful for a professional or another parent with similar experience to offer guidance or suggestions in
the communication process.
Countless books and articles have been written on this subject, and simply considering how to address
these issues in our children’s ministries is just the tip of the iceberg. In New York, we wanted a place to
start, which is what is offered here. As we go forward, may we show every child the love of Jesus, and
may we rely on God’s divine power as we strive to meet the needs of all children (2 Peter 1:3).
Let All the Children Come to Me: A Practical Guide to Including Children with Disabilities in Your Church
Ministries, by MaLesa Breeding, Dana Hood and Jerry Whitworth
Special Needs Smart Pages: Advice, Answers and Articles About Teaching Children with Special Needs, by
Joni & Friends
The Special Needs Ministry Handbook: A Church’s Guide to Reaching Children with Disabilities and Their
Families, by Amy Rapada
Youth Ministry Coordinator, New York, NY
By Susan Stroebel
One of the hardest jobs for any parent caring for a child with special needs is to find
balance. Parents are frequently operating on little sleep and raw emotions. Trying to
make great and practical choices under those circumstances can be very difficult. Even
simple decisions can become overwhelming. The next few paragraphs will give you
some practical ways to help you aim toward balance. I say “aim” because we never get
it perfect. When we get a chance to catch our breath and take a good look at how things
are going, we always find something that needs to be added, modified or deleted! It is a
constant evolution because people’s needs change over time.
The first thing I recommend is finding an hour a couple times a week just for you. If
you don’t have time to think or plan, you won’t be able to problem solve. If you have
a partner, you need to plan a block of time to problem solve together as well. This will
probably take a lot of creativity initially. Maybe it will be a long soak in the tub or a drive
with children strapped contented in their car seats. Maybe it will mean taking advantage
of your children’s naptime and letting the laundry go. (Some of you are laughing I’m sure
because these solutions are not remotely possible for you…be creative and come up with
what will work for you).
When you have time to think, start looking at your priorities. What are the non -
negotiable activities in your week? That would include, work, therapies, carpool etc…
Then look at your life priorities such as spending time with your kids, partner and
activities you do as a family such as church or sports activities. Next look at the things
that are negotiable in your life such as volunteer activities. Finally, think about the things
that you genuinely enjoy and would add if you had a clone to do the non-negotiable tasks
in your life.
When thinking of your child with special needs, think through their schedule. Are
there some activities that are negotiable? Are there other people who can help meet their
needs? Could friends or family lighten the load a bit? Could grandpa take them to one
therapy appointment a week? Could the family sit on the floor together a few minutes in
the evening to address some of the therapy “home work”? Also, look for ways to double
up. Most therapists are giving you homework so your children can complete “real life”
activities. Ask them to help you think about ways to do home work in real life ways.
Such as doing infant massage while giving the baby her bath or incorporating speech
games while driving in the car or at the grocery store. Also, try never to spend time just
sitting in a waiting room. Plan to spend that time with someone you love. Take a friend,
one of your other children or a family member. If what you really need is to indulge in
your favorite magazine, then treat yourself to that. You don’t really have time to “wait”
so try to use that time well. If you really feel like you are drowning in the “must do’s”
you MUST ask for more help. Call your service coordinator, pastor, women’s group or
any other resources. Let your personal support team brainstorm with you on how to make
your life more manageable. If “it takes a village to raise a (typical) child”, why should
your child be any different?
When your child is newly diagnosed, you may feel a compulsive need to spend 24
hours a day researching treatments, cures, trends, therapies, homeopathic remedies,
available services…. TRY to fight this urge! Your best bet will be to find a group of
parents in similar circumstances with children who are a little older than yours. They will
be able to guide you through the maze of possibilities and help you focus on the most
important things for your child. Some resources for that support will be listed at the end
of this article. I would recommend you still research things on your own, but limit the
time you spend so that you do not neglect your other priorities.
When looking at your typical children, it is sometimes harder to make their needs
an equal priority because they do not seem as pressing. Just remember that your special
needs child will always have the support of social services…a group home, a job coach
or independent living coach if needed. Your typical child will face adult life with only
the tools and training you were able to provide. Making them a priority is very important,
but does not necessarily require lots of additional time. Think about your own childhood.
Many of your fond memories might be of sharing household tasks. Mine include working
in the kitchen with my mother, polishing shoes with my dad and washing the car with my
dad. These tasks will be fun for your kids as long as you are mentally “in the moment”
with them and interested in what they have to say while you work.
When kids are small, an uninterrupted bedtime routine or bath routine will make
them feel special and secure. As they get older, maybe a trip to the Bagel shop every sat.
Morning or another favorite activity will keep them going. Try to plan some special time
according to their age. They just need to know that sometimes they are your number 1
priority too. Make it a goal to have special respite time with them occasionally. A “girls
night out” or a fishing trip now and then will help you both relax and really enjoy each
Having a brother or sister with special needs is sometimes very difficult and has it’s
own set of emotions. We implemented a family philosophy that “all feelings are o.k.” we
just want to find productive ways to deal with them. We hope this has allowed our kids
to express their feelings instead of bottling them up. When kids get older, they become
aware that some of their feelings may be hurtful to you. When they reach that awareness,
a mentor or family friend might be a better resource for them. There are also special web
sites and workshops specifically for siblings. All are well worth the effort.
Meeting your partner’s needs is sometimes a bigger challenge. After all, they are
adults and aware of the pressures you face. Right? Unfortunately, if you aren’t tackling
your challenges as a team, you will both run out of steam and find yourself bitter and
angry. The divorce rate is very high among families with children with special needs so
you must protect that relationship if you want it to last! The key is really communication
and altering your expectations. A lot of compromises are necessary and during the early
years especially. Maybe you used to make nightly home cooked meals a priority. In order
to tackle all your other responsibilities, maybe you will have to institute a pizza night
or carry out night. Maybe instead of ironing shirts you take them to a laundry service.
Maybe your standard of “clean” needs to follow health and safety standards and not
Martha Stewarts. It is also important that you don’t judge each other’s needs. Each person
is perfectly unique in how much sleep they need, how much stress they can tolerate and
how they deal with grief. If you try to convince your partner to think and feel like you do,
you will both be left empty. Try just to respect each other’s needs and communicate your
own. Keep communicating on this level, and you should be able to give and take so that
you both feel appreciated and respected.
Finally, I will get on my soap- box about taking care of you. This is the hardest thing
to do because you always feel your needs will wait. It is a parent’s natural point of view. I
will share a strong personal opinion here. I have seen many parents’ come and go. I have
seen many parents who crash and burn and many who are still happy and thriving ten
years later. The common thread I seem to see is that parents who have a well- rounded
life do better over the long haul. Parents who let their child’s disability become the center
of their existence tend to become very miserable over time. Please remember that the best
thing you can do for your children and partner is stay healthy and happy. If you can do
that, you will have the strength to tackle life’s challenges. Remember balance is a GOAL.
It does not happen over night. Start with the awareness of what you need. Start making
choices that will lead you toward balance. Re evaluate how things are going often and
KEEP Communicating! Know you are not alone. Many families are striving for the same
things. Find strength and support in each other.
By Susan Stroebel
Los Angeles, CA
Written by Sue Cusato
One of the most difficult things to talk to a parent about is whether or not their child has special needs. As a special educator for nearly thirty years and a parent of a child with special needs, I have been on both sides of the table with this topic.
As teachers in the children’s ministry, we have probably been faced with this situation more than once. A child comes to our class and just isn’t able to participate fully. Maybe they can’t seem to stay focused or in their seat? Maybe they can’t read the Scripture or don’t seem to understand the lesson?
If you’ve ever wondered how to talk to a parent in such a situation, here are some suggestions:
- Always start with something positive. “It was really great to have Johnny in class today. He seemed to have a good time.” “Your son is so enthusiastic.” There is always something good to say about every child.
- Ask a question that will help you to help the child. “I was wondering if there is anything your child needs in order to be able to participate more fully?” “I noticed he was quite active, and I would like to know what I might do to help him settle in better?”
- Make sure the parents feel their child is wanted in the class. Please don’t greet them at the door with “Wow, Sally was really having a hard time in here today.”
- Once you’ve established a relationship with the parents you could ask these questions regarding school. “Does your child receive any extra help at school?” “Is she in a smaller class?” or “Do you attend special meetings for your child?”
- Be patient. Some parents have been through the wringer in the school system and are leery of opening up. Try showing a lot of grace and meeting the child (and parents) where they are at. Once a parent feels you are on their side, most will welcome suggestions and feedback to make their child’s experience in class more positive and productive.
- Finally, if you’re really not sure what to do; get advice! There is usually someone in your ministry who has had experience with talking to parents. Ministry leaders, teachers, social workers and older parents are great resources.