Caring for Siblings of Special Needs Children

Original article can be found here.

A few years ago, our family of five headed to the zoo for a birthday celebration for our youngest. It was a hot, busy holiday weekend. Within minutes of pulling into the parking lot, my oldest, who has been diagnosed with an autism spectrum disorder, was begging to leave. His sister was, naturally, crushed.

Until we had that first conversation about her brother's condition, all she understood was that she wouldn't be seeing the elephants that day. My son cried all the way home, not because he was in distress, but because he felt terrible that his sister's dream birthday plans had changed.

 So, how do you turn situations like this into a positive experience? How do you strengthen the bonds between siblings when one of them has special needs? What's the right way to encouragehealthy relationships with all of your kids, and help them do the same with one another?

It's an ongoing process, but it begins with a good foundation. Here's how to start.

Make time for each child as an individual. They crave a connection with their siblings that may be difficult for any number of reasons, and they need one-on-one time with their adult caregivers as much as any child.

Make sure your children know that your child with special needs isn't more important than his or her siblings. Keep play dates, enjoy campouts and attend dance recitals. In order for your children to grow as confident, secure individuals, these childhood rites of passage should be honored with your full support and attention. You may not be able to do it all, but you can make sure that you make commitments to each child and stick with them. It builds trust, shows unity and respect for your kids, and helps them understand just how special they all are.

Explain the nature of the special needs of your child to his or her siblings. Encourage them to ask questions and listen to their concerns. Stay open and positive; your demeanor and attitudes will impact the way your children understand this information. Using age-appropriate terms and approaches, invite your children to explore the nature of the condition.

Each child plays an essential role in the family team. To do that, they need to be aware of special considerations, abilities, strengths and limitations, and of their own unique contributions.

Acknowledge their feelings. Children with a sibling with special needs may feel jealous at times, resentful, angry, confused, hurt, and even rejected. These feelings aren't shameful and are perfectly normal. By allowing your children to communicate and express themselves in a healthy way when they're upset, parents are better able to address any issues that may arise.

Encourage your children to spend one-on-one time with their siblings. Beautiful relationships often have the simplest of rituals that bond us together. Remind them of the things they enjoy together (a favorite food or movie), support quiet times (reading to one another or doing puzzles together), and try to record these events with videos and photos when you can. When things become challenging, remind your children of these positive experiences.

Put it all together. We did eventually get back to the zoo, and we were all much better prepared this time. My oldest son held his little sister's water bottle and showed her the best vantage point from which to see the baby elephants. They'd worked it out…with just a little bit of help from mom and dad.

Finding ways to enrich our relationships with our children and taking steps to ensure that siblings have good relationships with one another is something for which every good parent strives. When a child has special needs, this requires us to be that much more resourceful. Like all parenting, however, the right approach can help turn these challenges into opportunities for enrichment and growth.

Content by Kimberly Morgan.

7 Lessons

 

This post from the blog Wrestling With an Angel by Greg Lucas touched my heart and made my day. I hope it might be uplifting to you as well....

The tragedy of disability is not disability itself, but the isolation it often creates. This was one of the most important lessons our family had to learn. Sadly, we learned it the hard way. But hard lessons often lead to great insights and over the past few years we have had the wonderful opportunity to gain great wisdom from several families in many different communities.

While there are still many discoveries to be made along this journey, here are at least 7 helpful insights gleaned from the community of disability that have made a powerful difference in our family.  

1. God is both sovereign and good. When you are given a child with a severe disability, it is essential that you see God’s sovereign hand at work in your family. Scripture declares that your child was not an accident or a tragedy, but wonderfully and purposefully knit together from a blueprint of God’s plan that was designed before the foundation of the earth. (Psalm 139:13-17; Ephesians 1:3-12). Disability is not a curse; it is the goodness and grace of God magnified in ways that many typical families never get to experience.

 2. You have been brought into this community for a purpose. I was very slow to realized the purpose and potential of our family’s suffering and hardship until I began sharing our experiences. 2 Corinthians 1:3-7 came alive during that time. Suffering brings us into the intimate presence of God where the sweetest comfort occurs. But we are not comforted to become comfortable; we are comforted to become comforters. Every single episode in our family’s experience with disability was an equipping of God’s grace to be shared with those in desperate need of His comfort.  

3. Disability magnifies our vision for joy in the smallest things. Most families living with disability will testify that some of their greatest victories have been those moments typical families often take for granted. I remember the first time our son used the bathroom in a public restroom (at the age of 17). We had just walked into Walmart and Jake took me by the hand and led me to the men’s room. He pulled his pants down and tried to pee in the toilet. He missed the toilet completely, peeing all over the seat, the floor, the wall and the stall. But he didn’t pee in his pants! We were laughing, clapping, cheering and praising God in a urine covered stall of a Walmart restroom. Most people cannot comprehend the enormous victory of that day, but disability often gives us 20/20 vision to see the things that others seem to miss. This is a wonderful gift.  

4. Community brings much needed perspective As said before, the danger of disability is isolation. The danger of isolation is idolatry (yes, our disabled children can become idols). The blessing of community is perspective. We all need perspective to wake us from the potential of self-pity and self-centeredness.

Just when you think no one on earth could possibly have it more difficult than your family, you meet a single mother with severely autistic twin boys. And just when the single mother thinks she can’t go on, she meets a grandmother trying to raise a 10 year old girl with fetal alcohol syndrome. The grandmother watches as a young couple attempt to nourish their unresponsive child through a feeding tube between seizure episodes. These families are learning something extremely valuable from each other--perspective turns our inward focus to outward community. And within community, disability become ministry.  

5. Outspoken men are often minorities. While this is not always the case, oftentimes when it comes to family leadership, women seem to be the most outspoken advocates for their disabled children. A mother’s tenacity may seem like the most natural response to a child’s disability ("Mama Bear" is not one to be messed with), but when this tenacity stems from a father’s detachment or disillusionment, it can create a lopsided weakness in the family structure. A family living with disability needs a father of certain dependability. This dependability is often best cultivated and strengthened through other masculine men in the community of disability.

6. When marriage takes second place to disability, it ends up in last place. It has often been said, “The best way to love your children is to love your spouse.” While very few couples would admit to neglecting this truth in principle, many neglect it in practice. Good intention, without deliberate application, leads to marital deterioration. The relentless care of a disabled child, added to the care of other typically developing children in the home, added to working overtime to pay medical and therapy bills, added to stress and depression and weariness, leaves little time for marriage maintenance. A marriage that is not properly maintained is like a car leaking motor oil. Sooner or later the cylinders will seize, the engine will blow, and the damage will be beyond repair.

Do whatever it takes to make space in your busy schedule for quality time alone with your spouse. Men, don’t wait for your wife to seek this; lead the way. It could be as detailed as planning respite care and adding a date night every other week, or as simple as ending every evening sitting on the couch laughing (or crying) about the day's events. Aside from daily intimate time with the Lord and His word, this will be the single most important thing you can do to protect your family from becoming the alternative sad statistic.

7. A child with a disabled sibling is anything but typical. I have borrowed (and adopted) the term “typically developing child” from my good friend John Knight. It is clear and accurate language in the proper context. But the more time I spend with siblings in families touched by disability, the more I realize these kids are anything but typical (per se). I have watched in awe as siblings have stepped into difficult situations rivaling the heroic status of soldiers, firefighters and police officers. I have seen awkward, backward teenagers discover their extraordinary gift and calling as compassionate caregivers. And many times when I began to feel pity towards one of these typical siblings I have felt the faint nudge of the Lord scold me with, “Pay attention, I’m doing something incredible in the life of this child as I conform them into the image of my Son.”

No school, public or private, can teach the deep lessons of life like the school of disability. I can say without hesitation that my sons will be better men because of their relationship with their disabled brother. Living with Jake has not only prepared them for the worst of trials, it has equipped them with a profound sensitivity to recognize the intentional hand of God in the smallest, most unsuspecting, details of life.

What an extraordinary gift their brother has been!

These lessons are not even close to being exhaustive. They are ongoing and ever developing all around us. The desperate search and refreshing discovery of each nugget of wisdom brings strength to our family and equips us to be poured out into the lives of others.

 If you are reading this and happen to be new to the community of disability, welcome to the family! It is a wonderful, glorious, breathtaking journey that will open your eyes to the most precious things in life as it draws you closer and closer to the most precious truth for eternity.

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.”

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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Light

Caleb's eye really responds to light so we have a light box we use to help him with vision.

It touched my heart to see Mitchell pull it out so he could teach Caleb.

It melts me to see Mitchell so eager to share the light with Caleb

While at the same time Caleb teaches him what true light really is.

I hope my boys will never forget the light and love they feel when they spend time with Caleb.

For the way he shares his light is divine indeed.

Tribute to Siblings

This is the family whose story inspired me to start Chloe's Sunshine Playground. They deserve the recognition they got on the Today Show last week. Each of them touch my heart so much, and I think the song to a special needs' child's siblings will resonate to many of you....

Visit msnbc.com for breaking news, world news, and news about the economy

"Other Kids"

by Rian of Trach Ties

On our flight to Boston we were seated next to a business woman. She was nice enough to let us move from the aisle to the window, but it came up very early in conversation that she didn't have kids. I took that as the "so please keep your baby in check, I'm not up for it" kind of a statement. She and Sid talked business while Maaike and I snacked and snoozed. After a while she started to soften. She wanted to know about Maaike. What was her story? Why were we taking her to Boston? She even shared two of her in-flight purchased sliders with Sid. She was pleasant, but distant.

Then, without turbulence or warning, she started sobbing. With only an hour left on our flight she decided to make her move and become unglued. Through her tears she shared about her younger sister, born with down syndrome. Her sister died just 5 years ago. She loved her sister. She learned so much from her. But, "don't get me wrong," it was hard. It was hard to have a sister who needed her parents so much more. It was hard to not some how feel less loved when you require so much less time. It was just hard.

Next came her plea. "Be careful. Don't forget your other kids."

She was able to regain composure in the telling of the horse her parents bought her. She knew they loved her. She still rides horses competitively all thanks to her parents.

"But still it was hard. Don't forget your other kids."

I will never forget Coy's prayer just after they got back from China. "...and please bless that Mom and Dad will care for us as much as they do for Maaike." Indeed, finding the right balance between Maaike's tender health and Coy & Kees' tender feelings is no simple task. We have tried, but there are days that feel like Sophie's Choice. Last week we missed Kees' only soccer game because Maaike was in surgery. Tonight I left Maaike crying hysterically with the nurse so that I could go to Coy's basketball game. The choices are never easy, but I am learning to and trying to let go of the guilt, because I am doing my very best.




To the woman in seat 8C and all the "other kids": I hope you know you are not loved any less. You are not less valued because you need less time. You are not less important because you are healthy. You are loved. You are valued. You are so important to us. I hope you know how special you are.

Charlotte's Poems

Yesterday Ella, age 2, asked me where her sister was. I replied that Ava was upstairs asleep. Ella said "Where my other sister? Where Lily?"
It was the first time Ella has asked about Lily, unprompted.
I went upstairs to gather myself and stopped in front of a framed copy of two poems I wrote for Charlotte, one a few weeks before she passed, and one right after.

Goodnight Boo

In Boo's room all painted in pink
There's a feeding pump with lights that blink and
alarms that ring if the tube has a kink.
And an IV pole, and a feeding bag full
of Pediasure, good for body and soul.
And an air purifier and a humidifier,
and a pulse oximeter with five feet of wire
and a night stand and floor fan
and a red lit probe taped to Boo's foot or hand.
And Breath Rite Strips and Tender Grips
and Albuterol and Tylenol
and a Princess nightlight shining down the hall.
Goodnight Boo.
Goodnight to all your special things too:
Goodnight wire and humidifier
Goodnight fan and IV stand
Goodnight Grips and goodnight strips
Goodnight meds like Prevacid
and Goodnight to pumps that keep you fed
Goodnight to steady vital signs
Goodnight to tube and probe and lines
Goodnight to blinking lights and beeps
Goodnight to Boo, now fast asleep.

And the other:

In Charlotte's new room filled with Glory and Light
A dear little girl rests soundly tonight
and Grandmas and Grandpas have tucked her tight.
A brown dog rests her head at the foot of her bed
near a big stack of storybooks just freshly read.
She listens to lullabies with good little ears
Stretches little strong legs which brought her here
and of needles and haircuts she has no fear.
Her only regret is she knows we are sad.
She looks down and says "Goodnight mom and dad-
I'm safe and I'm happy in this beautiful place
I'm strong and I'm glad there's no tube on my face.
When I first arrived with a dance and a twirl
Jesus held me and said 'Well done little girl-
You did just what I sent you to do--
You brought nothing but joy and perspective too
And all those who met you saw Me in you.'
They gave me a big party with suckers galore
and beads and monkeys, but daddy, there's more!
I can do all the things I could not do before.
I'm glad Ella is with you, you'll be alright
Wouldn't want you to miss getting up in the night
and when missing me is just too much to bear
I'll send a kiss through my sister, you'll know I am there
Goodnight mom and dad, I'll see you so soon
I can't wait to show you my new princess room!
Thank you for taking such good care of me
Now I'll watch over you and my whole family."

Everything is fine. My girls are fine. And I know just where they are.

Autism Through Siblings' Eyes

What is it like to have a sibling with autism?

Books for Siblings

Guest post by Shannon of My Cute Little Monkeys. Thanks, Shannon!!!

As my kids grow I continuously struggle as to how I will help my other kids accept and talk about their sister with their school mates and friends. In talking with others, I was recommended to a book called Hi, My Name is Jack.

Hi My Name is Jack by Christina Beall-Sullivan

It's about a boy whose sister has a terminal ilness. It deals with the frequent appointments, hospital stays and even jealousy issues. While I am sure my three year old isn't quite ready for the issues in that book, I am still looking forward to checking it out myself and sharing it with my children as they get older.

Just Because by Rebecca Elliott

Just Because is about how a little boy thinks his sister is perfect, and very similar to a princess. It really focuses on how wonderful his sister is, instead of what she can't do and it's written for a small child. Here is a review from Amazon:

'My big sister Clemmie is my best friend. She can't walk, talk, move around much, cook macaroni, pilot a plane, juggle or do algebra. I don't know why she doesn't do these things. Just because.' This heartwarming picture book tells of a brother's love for his sister. He is so enthusiastic about just how loving and special she is, and delights in telling us about all the fun things they do together. Only as his tale unfolds does the reader begin to realize that his sister has special needs...and by then we just accept as he does all the wonderful things about her. This amusing and often touching story encompasses the issue of disability in a charming celebration of sibling friendship to which all children can relate.

Do you have any books that are helpful for your family?

Brotherly Love

Matthew recently wrote this for school:

I have a brother who has a special body.

He can’t walk. He can’t talk. He can’t move his body in the way he wants. But does have his own language of love. One of the ways he tells me he loves me is with his wink. He is always winking because he only has one eye.


He shows me love when I lay by him. He is like a teddy bear because even though he can’t talk, he always listens. I can tell him my problems and he makes me feel happy.
When I’m having a hard day, I lay by him and he helps my bad feelings to melt away. He helps me to feel peaceful.


When I hug my brother I like to do a special arm lock with his arm and mine. My brother can’t hug me back, but when I want him to hug me I help him by putting his arms around my neck.


I can tell he’s happy when I’m around. When I come home from school and I’m near him, he usually gives me a smile.


My brother teaches me that love is the most important thing ever. He tells me with a feeling. He tells me with his heart. He shows me you don’t have to have a perfect body to love perfectly.

Helping Siblings

At times, I forget it's not just me going through this. I am not the only one who has to deal with my childs special needs. So do his siblings. I have had some pretty real conversations lately with Brody's siblings. It is hard for them. He does things they can't explain. So I came across this article and I thought it was very sound advice. Believe it or not when you have a special needs child whether you like it or not you become a special needs family. You have to adapt and talk about how it effects the whole family. This article really helped me. I hope it helps you as well.

BE OPEN AND HONEST

If you don't know the answer to your children's questions about the disability...say so and try to find the answer.

VALUE EACH CHILD INDIVIDUALLY

Point out each child's strengths and weaknesses; don't compare one with the other.

LIMIT CAREGIVING/BABYSITTING RESPONSIBILITIES

Give recognition when siblings help the special needs child. Don't choose just certain children in the family to help (i.e., the oldest girl.) Everyone can do something. Explain why you are asking for their help (i.e., "if you do this it will give me more time to do other things as well as be with you.")

BE FAIR

Treat the special needs child as normally as possible in terms of attention, discipline and resources.

ACCEPT THE DISABILITY

Others won't accept the disability if you don't. Denying it hinders siblings from being able to deal with it or adjust to it.

GET BOOKS FROM THE LIBRARY

Books are available to explain disabilities. These resources are especially helpful in explaining this subject to young children.

SOME SIBLINGS DISAGREEMENTS ARE NORMAL AND NEED TO HAPPEN

Stopping every disagreement denies the brothers and sisters the opportunity to learn to solve their own problems.

WELCOME OTHER CHILDREN AND FRIENDS INTO THE HOME

Your welcome attitude gives a model of acceptance to the siblings and friends.

PRAISE THE SIBLINGS WHEN THEY HAVE BEEN PATIENT WITH THE SPECIAL NEEDS CHILD OR SACRIFICED, OR BEEN ESPECIALLY HELPFUL.