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Here are some ideas too fun not share! Images linked.

Safeguarding the Siblings of Children With Special Needs

By M. Sue Bergin of BYU Magazine.

Families should know the potential risks, get support, and expand their faith.


As Brandon M. Ogden and Jenny Watson Ogden raise four young children in Gilbert, Ariz., their third child’s special needs have the potential to eclipse the needs of the other three, which could contribute to resentment and alienation. Instead, 8-year-old Austin’s limitations and peculiarities—and also his loving disposition—are mostly a blessing to his siblings.

“We have taught our kids from day one that Austin’s syndrome does not define who he is. He is first a child of God, an individual, and their brother. We often discuss why God made him this way, and why He sent him to our family. Our kids comment that even though Austin has issues that are difficult to deal with, Austin brings a lot of love and happiness into our family,” says Jenny.

All families who have a child or children with special needs struggle for balance. Whether their child has autism, cerebral palsy, or diabetes, most parents can quote the incidence rates per 100 children, list symptoms, talk about causes, and explain treatments. Some, however, are not versed in the potential risks to siblings of a child with special needs and the protective factors that can help all their children thrive in the face of tremendous challenges.

For several decades, professors Susanne Olsen Roper and Tina Taylor Dyches, and their colleagues Barbara L. Mandleco and Elaine Marshall, have been studying families that include a child or children with special needs. While their studies show that these families generally do quite well, and, in fact, may benefit in some ways from having a child with special needs, they say parents can minimize the downsides by understanding the risks, getting support, and drawing on their faith.




Know the Risks

One of the first things parents can do to support their typically developing children is to get a handle on the potential risks to the siblings and their relationships within the family. One risk is resentment. “Research shows that children take on extra responsibilities, especially the older sister,” says Roper, associate professor of family life. “She might feel like she can’t go out and be with friends because she needs to take care of her sibling with special needs, or because Mom is too worn out and Dad is working a second job. These children can become resentful, even if no one’s asked them to take on the extra duties.”

The Ogdens work at preventing resentment by expecting Austin to at least try to do what’s expected of his siblings, such as chores, schoolwork, and practicing good manners. These are not easy tasks for an 8-year-old with Williams syndrome, a genetic condition characterized by a wide range of physical and intellectual difficulties. “When our kids see that Austin also has to make his bed, treat others kindly, not yell, and follow the rules in the house, they don’t have those negative feelings towards him,” says Brandon. As the children observe Austin struggling to do his best, it’s easier for them to accept his limitations.

Siblings may also be at higher risk for being bullied, perhaps as they try to protect their brother or sister from tormenters. While they might become physical guardians, they also can feel pressure to overachieve academically. “If you have a child who is not functioning normally intellectually, the sibling often feels like he or she has to overcompensate—‘I’ve got to get straight As and be the top violinist so I even things out,’” says Dyches, an associate professor of special education. Parents should be alert to these behaviors and reassure their children that they accept them as they are, she says.

One of the most powerful protective factors in all these risks is ongoing conversation. If parents explain a child’s special needs to the family when a diagnosis is first made but then don’t bring it up again, their children can be at greater risk. Rather, parents should cultivate an open relationship where their typically developing children feel comfortable disclosing thoughts and feelings, no matter how distressing. The Ogdens nurture this gestalt daily.

“Our kids say, ‘When will he ever learn?’ a lot in frustration, and we accept their feelings,” says Jenny. “We talk all the time about what’s going on with him and with them, and they know we’ll listen even if we’re not thrilled about what they’re saying.”

Get Support

As every parent of a child with special needs knows, finding help can be daunting. The more significant the disability, the harder it can be for families. A typical 13-year-old babysitter would not be able to handle, for example, a nonverbal 4-year-old with autism who has self-destructive behaviors. “So parents say, ‘I can’t trust anyone with my child or children to do the job that I can do, so I’ll just do it all myself,’” says Dyches. Giving up on the search means that parents don’t get a break, which in turn means they may be less available both physically and emotionally to each other and to their other children.

Dyches and Roper urge parents to persist in looking for support until they find it. While state programs for respite care can have long waiting lists, parents should get on the lists. They also can enlist adult sitters, hire two sitters at a time, trade time off with other parents of children with special needs, and take advantage of special programs. In Utah County, for example, parents who do not get state assistance or are on a waiting list can bring their child with special needs to Friday’s Kids Respite, www.fridayskids.org, where competent adults, often BYU student volunteers accompanied by a nurse and other professionals, provide free childcare for an evening.

Parents can also enroll their children in the Sibling Support Project, a workshop that helps normalize the experience of having a sibling with a special need (siblingsupport.org). The monthly “Sibshops” are held in 340 locations throughout the world. “It’s a fun, engaging two or three hours where these kids can feel like they’re not alone. They can talk to other kids who are likely to relate to their experiences when they say, ‘Yeah, my brother has seizures, too’ or ‘Once my brother was life-flighted to the hospital.’ They can talk about these experiences that have really affected their lives in a friendly, easy-to-communicate environment,” says Dyches, co-founder of Sibshops of Utah County.

The Ogdens are very selective about whom they entrust with Austin, and that means their chances to get away wax and wane with what help is available. They don’t live near extended family, so they don’t get as many breaks as they would like, but they do try to go on a date each week. “But,” says Brandon, “if Austin’s behavior is more difficult at times, we won’t put the burden of babysitting on our other kids.”

At different times, the Ogdens’ support system for Austin has included a behavior coach, physical therapist, occupational therapist, speech therapist, music therapist, and respite providers. The support team also includes his schoolteacher and aides. Of great help has been joining the Williams Syndrome Association in their area. “We share ideas that help us solve some of our problems and we laugh about the funny things our children have in common. We support each other. It also helps to know that someone else knows what you are going through and how you feel when things get rough,” says Brandon.

Expand Your Faith

While having a child with special needs poses risks to other children in a family, much of Dyches and Roper’s research shows that this situation can be positive emotionally and spiritually. “Children in these families can develop high levels of empathy and higher self-control,” says Roper. “It may be a natural consequence of seeing siblings in difficult situations.”

In the Ogdens’ case, Austin’s syndrome includes high social abilities, making him easier to enjoy and be around. For families whose child with special needs means decreased social abilities, staying attached and bonded—and sympathetic—can be much more challenging.

Whatever the idiosyncrasies of a child with special needs, his or her parents and siblings are likely to wonder, “If we just had enough faith, could this child be healed?” Or perhaps they’ve had someone else present them with that disconcerting question. The response, says Dyches, is in becoming secure enough in their faith to know that this is a calling. “Christ’s disciples asked who had sinned that caused a man to be blind from birth, the man or his parents. Christ answered that no one had sinned but that the man was blind so ‘that the works of God should be made manifest in him’ (John 9:3).”

While Christ healed the blind man physically, Dyches believes that families with special needs children can be healed in multiple ways. “When we accept God’s will and we accept the circumstances he’s given to us—if we do that with an open heart and with faith—then we are healed, and our children are healed, emotionally and spiritually.”

4 Tips for Photographing Special Needs Children

Last year, I realized something extremely disturbing. You see, at the end of each year I go through all our photos and compile the "best of..." Yes, there are generally still hundreds, but at least I clear out the obvious bad pictures. I usually choose my 12 favorite pictures of both of the girls and create a calendar for my parents. Well, Samantha has always not been super easy to photograph, but as she has gotten older, it has seemed even harder to get a good picture of her. And last year, as I went through our pictures, I couldn't even find 12 pictures of Samantha that were "good." I was heartbroken. Devestated. Her future, like many of our kids, is so uncertain. What if all I have left one day are these pictures? And I can't find even 12 to sum up an entire year? I immediately save up money from my tutoring jobs and went out and bought a much better camera!

Yes with a camera that takes 7 shots a second, I have gotten a lot more pictures of Sammy that I adore. But she's still not all that easy to photograph.

Today on Pinterest (let's all give a prayer of thanksgiving for that wonderful little location on the web), I came across a fantastic article: 4 Tips for a Successful Session with Special Needs Children. The article is written more for professional photographers, but I these 4 simple tips can be useful to all of us...especially to those who have a DSLR or something similar to it. It's worth reading.



Again, it's hard to get pictures of our kids -- any kids really. But when you have a child who won't/can't smile on demand or won't sit still in a posed position, doing the whole picutre thing can be sad. (After leaving a JCPenney photo session one time, I felt so discouraged believing that I would never get a picture with Samantha and Callie together. Not one turned out. The only picture I bought was one when Sammy was crying as Callie hugged her. Not what I'd call a "successful" picture, but memorable nonetheless.) But when I do get a picture of Sammy that is good -- so good that it's like seeing her real self -- her eyes shine and her smile is so full of joy...my heart swells up. And those are the pictures I want to hold if a time ever comes that I can't hold her.

So, read the short article, get some tips, and if you don't take the pictures yourself, ask your photographer to use some of the tips. It'll be worth it.

Financial Assistance Resources

I compiled a list of resources I thought were worth sharing with everyone.

These are all resources for funding needs-



The Lindsay Foundation- to assist families with resources necessary to provide medical treatment, therapies and rehabilitative equipment in order to improve the quality of life for their special needs children. (http://www.lindsayfoundation.org/)

Fund it Forward- to ease the burdens of families with special needs children by raising money for adaptive equipment not covered by health insurance. (www.funditfwd.org)

Disability Grants-Help Fund Handicap Vans (www.amsvans.com)

Disabled Childrens Relief Fund-Funding resource provides disabled children with assistance to obtain wheelchairs, orthopedic braces, walkers, lifts, hearing aids, eyeglasses, medical equipment, physical therapy, and surgery. (www.dcrf.com)

The Kaitlin Marie Bell Foundation-Helping Children with Disabilities. They provide financial assistance to disabled children who are unable to afford equipment and/or services they need. We believe that quality of life for a disabled child is a necessity not a luxury. (www.kmbfoundation.com)

The M.O.R.G.A.N. Project-Resources, Equipment, and Funding opportunities for families of parents with special needs/complex needs children. (http://www.themorganproject.org/)

Presidents Choice- This grant for kids is dedicated to helping children who are physically or developmentally challenged. The aim is to remove obstacles that make everyday living extremely difficult and to provide these young people with a renewed sense of dignity, independence, and freedom. (www.presidentschoice.ca)

Traveling Bears

Do you know a child who would love a visit from a cute and cuddly teddybear who just so happens to have the same disability as they do? These friendly bears are on a very special journey spreading awareness, encouragement and love by visiting families all over the world. This mission was brought to life by a very young 7 year old boy named Elijah and his mom. They wanted to raise awareness for his diagnosis Pediatric Stroke, and thus the Traveling Awareness Bears were born.


The effort took off and was even more successful than they could have ever imagined, bringing along the conception of multiple bears with varying diagnosis’s known as the Bearowicz family. The bears are allowed to visit the home of a very special little girl or boy for 1 week, and for individual circumstances up to 2 weeks.They arrive with a journal and a passport in tow. Each child gets to stamp the passport and marvel at how far and wide their bear has traveled to be with them. (pretty awesome huh)?The bears hate that they have to leave after just 1 week but they are mindful that their job is very important and they have friends around the world that need them too.The bear is allowed to go almost everywhere, to schools, Dr.s appointments, surgeries and even while they are attending horseback therapy lessons. The organization is to taking suggestions on other disorders, diseases,syndromes, and disabilities but for now the bears that are making the rounds are...Pediatric Stroke, Autism, Congenital Heart Defect and Rare Chromosome Disorders, lymphatic malformation, Chiari malformation, cerebral cavernous malformation, EA/TEF and they are also working on diabetes, epilepsy, leukemia, hearing impairment, ADHD/ADD.. Their goal is to eventually have bears for all of the things that affect our children. If you would like a member of the Bearowicz family to come visit your home for a week Click Here .The organization is currently in the process of becoming a non-profit 501c3 but in the meantime has a WISH LIST Please take a moment to see if you can help out with any of the items on their wishlist. They are not expensive items and some of you may have things around the house that would be helpful to them.Traveling Awareness BearsP.O. Box 1513O’fallon, MO 63366

Handle

The Letters He Would Write

I just had to share this sweet birthday gift to Caleb from his grandmother, Janene Baadsgaard.

Happy Birthday Caleb!
Instead of writing a story for your birthday this year I thought you might want me to help you write a few letters to your mother, father and brothers Joshua, Mathew and Mitchell.
I think if you were able to write a letter to these very special people who love you so much and take such good care of you they might read like this . . .


Dear Mother,

Many years ago you went in for an ultrasound very early in your pregnancy. You found out that I was a boy . . . and you also found out that I was missing my brain. When the medical professionals told you that I had no chance of survival and recommended an abortion - thank you for having the courage to listen to your heart and not your fears. When they told you I would have no quality of life and that I would ruin your family’s quality of life, thank you for choosing to discover what quality of life really means. When they told you I was missing an eye, thank you for choosing to see me as your precious son and not what the doctor called me (not viable - not conpatible with life). When further tests revealed that my entire head had not formed correctly and that my cleft-plate, partially formed nose and multiple missing cranial structures would make eating and breathing in a usual way impossible, thank you for choosing not to despair, but to devote yourself cheerfully and gratefully to my 24-hour care. When the doctors told you to take me home, buy a burial plot and let me die, thank you for choosing to fight for my life and celebrate each day I was in your home.

These past seven years have brought multiple hospitalizations and near death emergencies. We’ve spent a lot of time in hospital, you and me. Thank you for always being there right beside me when each individual breath was painful, labored and exhausting. I’ve heard your every prayer, every heart-felt longing and each exhausted plea to God. And though I’ve never been able to speak a word or raise my arms to embrace you, never doubt how much I love you my precious mother. There is a love deeper than life and broader than time between you and me, an eternal bond that time and circumstance will never break.

I am so grateful that you have chosen to live the past seven years with joy, not sorrow – that my presence was and is enough for you. The world defines us by what we can do. Thank you for choosing to define me by who I am. There will be a day, beyond this life, when I will be able to say all the things I never said, but I have a feeling you already know. When two hearts are knit together, there is often no need for words.

I was born in the winter, a time of waiting before the spring. Always remember that winter’s promise is the hope of spring. There will be a day when the time of waiting is over and all that was lost will be reborn.

I love you mom.

Caleb


Dear Father,

I know you and mom stay up late every night with me so my medication can take effect and also to have some special snuggle time with me. You and Mom usually tuck me into bed around midnight, but it usually isn't long until my alarms start beeping, I need suctioning, a diaper change or more medicine. A few nights a week I have a night nurse who sits with me from 12-6 so you and mom can get some sleep. But on the other nights, it is you and me Dad. You are always there with me when I need you in the night. Those late night hours when it is just you and me mean everything to me. In this life I will never be able play catch, or even speak or hug you. But I know that when fathers love their sons, they love them in the way they need to be loved. With us it is g-tubes, respirators and diapers.

You are always there with me when I need you in the day also. Dad, thank you for going to work every day at BYU so that all of us have everything we need.

Dad, I want you to know about something you may not see. When fathers love their sons like you love me, the powers of heaven open. There are angels around you every night, lifting your arms when you are too tired and keeping you awake when every cell in your body screams for sleep. I am aware of and grateful for every time you turn me, change my diaper, suction me then hug me and kiss me. You never complain, and though I can’t respond when you talk to me, I hear you Dad. I hear every word, spoken or unspoken, every desire, and every prayer to God in my behalf.

I also love the way you tease me like Dad’s do. Like the way you call me One-eye and let me dress up as the one-eyed pirate on Halloween.

I love the way take me everywhere and proudly tell people I am your son. When you come into my room at night I always proudly tell the angels that you are my father.

I love you Dad.

Caleb






Dear Brothers,

Josh, Matty and Mitch - I’m so happy that you are my brothers. You always take time every day to include me and make me an important part of the Moody boy’s story.

I remember when you used to crawl in in crib when I was a baby and sing “I am a child of God” when my heart rate was getting too slow. You always brought me toys and even though I couldn’t play with them the way you do, I imagined myself playing with them and it was still fun.

I love it when you hug and kiss me and tell me about your day. Even though I can’t raise my arms to hug you back, I love the way you lift my arms around your neck and put your cheek next to my lips.

When you talk to me I can’t answer you with my mouth in words, but I hear you listening to me with your heart. When you’re listening that way you can hear me telling you, “I love you Josh.” “I love you Matty.” “I love you Mitchell.” Thank you for helping mom during the day when I need to be turned or suctioned. That is such a nice way to tell me you love me back.

Don’t worry about my eye that is missing. When I was in heaven, I knew the Baadsgaard secret code for telling each other “I love you, you’re wonderful, and you can do it!” It was a wink. I knew that I would never be able to speak to you with words in this life, so I thought of a plan. That is why I chose to come as your brother winking so that you would always know that I love you and believe in you. Thank you for believing in me – believing that I am still your brother inside this body – even though I can’t move, or see or hear or think the way you do. Thank you for believing that even though I’m missing my brain, I’m not missing my heart and soul. Thank you for believing that we will always be one of the Moody boys and we’ll always love each other forever.

I love you Joshua.

I love you Mathew.

I love you Mitchell.

Caleb

Brothers

I saw this on EFTV's blog and just had to pass it along!

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Fishbowl Cards

I wanted to share a resource I recently found, Fishbowl Cards. They sell special needs-related cards and posters, they have some really, really cute things! Here are just a few....

The Most Beautiful Things

I was so grateful Jocalyn shared this trailer and film on her blog. It truly inspired me for many reasons, so I thought I'd share it! Here is the trailer and the actual, full film. Truly amazing.